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Cord Blood for Autism – Israel Clinical Trial

Transfusion of cord blood for autism clinical trial

At the end of March 2021, my third child participated in a clinical trial at Sheba Medical Center in Israel. The clinical trial aims to find out the effect of a cord blood transfusion for autism or cerebral palsy. My son is diagnosed with autism spectrum disorder. I am hoping to see improvements in his communication. The treatment has the potential to give him improvements in balance and motor skills as well. In this post I will describe the cord blood transfusion at Sheba MC.

Participating in a clinical trial in Israel to test the effect of cord blood on autism

Our story with the cord blood begins years before we even had children, when Shira was a neonatal nurse at Sheba.

In one of the hospital courses for neonatal nurses, a local cord blood bank “Taburit” gave a lecture about cord blood and their work. Shira was later invited as a neonatal nurse to Taburit’s convention where Professor Joanne Kurtzberg was invited to give a lecture about her clinical trails on the effects of cord blood for autism, cerebral palsy, leukemia and more.

Following that lecture, Shira explained to me the importance of preserving cord blood. Unfortunately, this is very expensive. At the times our eldest and second child were born we decided not to preserve. Fortunately the price in Israel has gone down. The local HMOs take part in the expenses.

When our third child was born, our eldest was just a few months after his autism diagnosis. Since we already knew about the Duke clinical trial, we thought we will have a use for his cord blood for our eldest’s autism. We would have preserved it even at the original cost.

The clinical trials at Duke University allow the use of siblings cord blood. Our first attempt at using our third child’s cord blood was for our eldest’s autism.

However, the clinical trial at Duke has a very long waiting list. The cord blood unit we had, was not going to be big enough. Eventually our eldest received MSC stem cells, in Russia. A similar procedure in terms of medical treatment and expected outcome. He had very good results for both autism and epilepsy.

Eventually, our third child was also diagnosed with autism. As soon as the clinical trial was opened at Sheba, we signed up. We started on August 2020. Each participant goes through two rounds, and we are currently after our second.

Arriving at Sheba Medical Center for the clinical trial

The clinical was approved to open at March 2020. As soon as it did we immediately filed our papers to register our third child. We already had nearly everything prepared, since we had the paperwork prepared for the registration of the eldest in the Duke trial. Our eldest couldn’t be entered at the Sheba trial since it doesn’t accept sibling cord blood.

We had some additional testing to do, and filed all the paperwork. After we received, approval to start, and a date, we did the first round in August. The first round was basically the same as the current one. (I hadn’t translated that post yet.)

Research stages

Some of the stages repeat themselves. The administration day repeats twice. Once with a placebo and once with the cord blood. In this manner, the researchers create a control group. This is a necessary requirement for quality clinical research.

This research method is called Double Blind. In this method each participant knows they receive the real treatment. Otherwise we wouldn’t want to enter such a trial.

Developmental assessment

After receiving approval to participate, the next stage will be a developmental assessment. Autistic children will need to have their communication skills assessed. CP children will need to have their motor skill assessed.

As we have an autistic child he had his cognitive and communicational skills assessed.

We entered one of the offices. He was asked to solve some puzzles, and answer some questions. He was shown some pictures to recognize. It wasn’t too bad, but he had a hard time sitting in the room for long. The research consultants played some games with him. They also raced in the hallway to help him focus.

We also received a questionnaire to fill out at home, and return in the next session.

Cord blood or placebo transfusion

About a week after the assessment, we returned to the hospital. We received the cord blood or the placebo.

Since this was our second round, we did the assessment again, and received another transfusion. If the first transfusion was the placebo, this time we got the cord blood. The syringe is covered so we won’t be able to guess its contents.

Mental reinforcement as preparation for an injection

In order to make things smoother for our child, we prepared a social story. We gave a copy to his kindergarten as well. We read him the story everyday about two weeks in advance. (Contact us if you need a copy of this social story)

Entering the nurse’s office to draw blood was still difficult. He is young. But knowing how the day will look like helps a lot.

The story visually describes the daily schedule. Knowing what to expect helps with waiting a long time too.

Transfusion day

We arrived early in the morning, at 7:30am. The research consultant greeted us and made sure we know what’s the schedule. She introduced us to the medical staff, and made sure we were comfortable.

First stop – blood tests

The first stop after arrival was the nurse’s office. He was very worried about getting a needle injection.

He was weighed, and his height was measured. The nurse drew blood for a blood test. She left the intravenous cannula in his hand. This will later be used to transfuse the placebo/cord blood unit.

Waiting in the nurse’s office

After leaving the line in his hand, we had to wait a few hours. The cord blood needs to be defrosted and prepared for the transfusion. This takes a while, and they can’t prepare it in advance. If anything happens it might go to waste.

The placebo doesn’t need as much preparation, but it is given at about the same time to give the impression of the real deal.

So we waited a few hours. We watched TV, played some games, and had some snacks. We were resting on the hospital bed as the staff brought the transfusion unit.

The placebo / cord blood used for autism treatment is covered to insure we don’t know if we received the real deal for research purposes

Cord blood / placebo transfusion

The cord blood or placebo comes in a large covered syringe so we don’t know what he’s getting. The syringe is marked so we’ll know it’s his. We signed some paperwork that we agree to transfuse the unit and some medications.

The nurse attached the syringe, then covered everything with a cloth. This is so we don’t see the color of the fluid as it goes through the tubes. It was all very exciting.

The nurse started pushing on the syringe. In a very anticlimactic minute or two it was finished.

We had to wait around another couple of hours to make sure he doesn’t have any adverse reactions. And we returned home.

Not really sure what’s going on. My son as he’s getting the cord blood transfusion

Follow-up

Three days after the transfusion we went back to the hospital. They took another blood test. This is to monitor that the cord blood was accepted. As a result of a real cord blood transfusion, stem cells will be see in the blood test.

About half a year after the second round we will be asked to return for another follow-up. And that’s it.


What is the expected effect of cord blood for autism or CP?

When cord blood is given to a child for autism, the researchers expect improvements in communication. CP children will be expected to improve in mobility.

Since my child is autistic, I would like to see the improvements in his communicational skills. For example, that he will have less echolalia. I hope he will do better in social understanding.

From the experience we have with our eldest’s results, I can also hope for other skills to improve. For instance, his balance and motor skills could improve. His sensory processing issues could also decrease. And much much more.

Adverse side-effects from a cord blood transfusion

This is not a medicine, and since it’s his own tissues being returned there shouldn’t be any adverse side-effects. However, cord blood is cryo-preserved. As a result of the preservation process there might be a reaction to the preservation chemicals.

When the cord blood is defrosted and prepared for a transfusion, The chemicals are washed out. But there will always be some left in the blood. This is the reason we had to stay in the hospital after the transfusion.

Another side-effect that is well documented is a period of increased hyperactivity. Many parents on stem cell Facebook groups report this effect. That for a few weeks and up to about 8 months their child was intolerable.

I am not worried about this happening, because I understand this is a representation of the stem cells activity. Whether or not there will be increased hyperactivity, it will pass within a few months.

Finally, if the effect of the cord blood on my third child is similar to the effect of the stem cells on my eldest, I also expect to see some temporary behavioral regressions.

Temporary Behavioral Regressions

My eldest had his first stem cell therapy (SCT) two years ago. The clinic in Russia suggested we have up to five SCT six months apart. Our third session was in March 2019, just as the pandemic hit Israel and Russia. We are aiming to return to the Russian or Serbian clinic in the summer.

During the period six month periods after the treatments he had incredible leaps in behavioral development. During these periods there were also temporary behavioral regressions. It felt like his development was running to catch up, and then suddenly came to a halt. Each time for about a week he would regress just a little. It was quite frustrating, but after a few days, he would rejoin the race.

If the same effect happens with cord blood, I will no be worried. I realized that the regressions are a part of the process that leads to surprising results. If he starts hitting again as he used to, he will probably have a quicker time learning that he is expected to behave more calmly , for instance.

Some background on cord blood for autism and cerebral palsy

In the late 80s, Professor Kurtzberg discovered the potential of cord blood when one of her patients was transplanted with his sister’s cord blood. Following the transfusion, her then 5 year old patient recovered from Fanconi Anemia. This led her into research on the potential of this treatment for other conditions.

From there, Kurtzberg started focusing on the potential to help children with CP and autism.

Her research showed that children with cerebral palsy can have significant improvement in motor skills.

Under certain conditions children with autism had significant improvements in communication. Autistic children with normal or higher IQ (>70), and with a minimal cell count in the cord blood unit (above 20 million cells per child’s weight in kilograms). Improvements were most significant in children between the age of 3 to 7 years old.

Expanding on the research

The fact is that Professor Kurtzberg wasn’t the first to research stem cell therapy. However, her name has become prominent and she is considered the guru of stem cell research. Many stem cell clinics refer to her for consultation.

As a result of her publications, the stem cell research field has expanded increasingly fast. It has since expanded to many more clinical research fields in other countries. Even here in Israel, there are more than a few clinical trials that look into stem cell potential in governmental hospitals and private companies.

On top of cord blood, there are many more sources for stem cells. These are employed in regenerative medicine for more and more conditions. This allows patients to obtain stem cell therapy even without cord blood.

In Israel the stem cell treatment field is still really still in infancy, but there are more and more options and advances all the time. Sheba Medical Center’s cord blood research opened in 2020. If it’s results will show that cord blood significantly improves the condition of autism or CP children, it will probably expand the research into additional fields in Sheba and other Israeli research centers.

How to enter the cord blood for autism or cerebral palsy clinical trial

The clinical trial entry conditions are similar to those in Duke. There are other research centers around the globe that accept patients under different conditions. If you do not meet the entry conditions or even have a unit of cord blood, it might be worthwhile to expand the search.

Sheba clinical trial entry conditions

The Sheba clinical trial is at its first stage, and only accepts Israeli residents. First stage clinical trials aim mainly to prove that a procedure is safe. There is only room for about 30 patients, but since the entry conditions are very limiting, there are still spots available. *At the time of writing the article.

Autologous cord blood

This clinical trail accepts only patients that have cord blood that was taken at their own birth. Sibling or donor cord blood will not be accepted at this stage. Dr. Bar-Yossef applied for a sibling cord blood trial as well, but it was not approved.

Some clinics accept sibling or donated cord blood for autism and other conditions.

Minimal cell count and clean cord blood unit

The Duke cord blood for autism/CP has already established the minimum unit size for results. Any cord blood unit that is too small will not be accepted in the trial. It also must be clean from any viral, bacterial or fungal infection.

Contact your cord blood bank to send you the preserved unit information. The document should detail the cell count, and that the unit is clean from any infections.

Calculate if your cord blood unit has the minimal amount of cells before applying to save yourself the effort:

Look at the document and locate the cell count. It will usually be a three digit number with an exponent. You can ignore the exponent for the calculation. In the example below the important number is 386. Divide that number on your cord blood document by your child’s weight in kilograms. The result should be bigger than 20.

An example from a cord blood information document. The figure in red is the amount of nucleated cells. This is the amount that is calculated towards cord blood therapy effectiveness.

For example if your child weighs 15kg: 386/15 = 25.7 . This is more than enough to enter the research.

But if your child weighs 20kg: 386/20 = 19.3 . Since the result is less than 20, the child will not be accepted to the research.

No contraindications

The research team will access the candidate’s medical history. They are looking for any background illnesses that could skew the results of the study. They will also look for medical conditions that would put the candidate at risk from the transfusion.

For example, if a child with autism also has epilepsy, there might be a relief of seizures. (Such as what happened with my eldest). It would be impossible to attribute the developmental improvements only to autism. This would be an excellent outcome for the child, but useless for research purposes.

If the candidate has cancer for example, the transfusion would put him at risk. The stem cells might act as growth factors for the cancer tissue.

Age

The Sheba trial is open to children up to the age of 12 years old. If your child is older but there are still enough cells in the unit, it is worthwhile to check other clinics. Check out our clinic recommendations page (will be translated soon).

How to Register

If your cord blood and child meet all the requirement, send your documents to the trial email: (email was removed as the Sheba clinical trial is currently not actively recruiting candidates).

*Unfortunately at the time of writing the post the clinical trial was still recruiting candidates. At this stage the Sheba clinical trial is no longer looking for candidates. This leaves the option of registering for clinical trials at other countries. Go to our clinics recommendations page to look for our list of private clinics and clinical trials. Go to clinicaltrials.gov to search for trials that are actively recruiting.

Alternatively, we will be happy to offer our services to help to you find the right clinic/trial. Please fill out the contact form.

In conclusion

When we finish our obligations to the trial in about six month, we will hopefully report on the incredible results we might see in our child. It is possible that he will not have significant improvements.

Improvements my appear within a few days or only be clear after a few months. There is no way to tell in advance how a child will react to the treatment.

Even if my child does not show any improvements, I am very excited that the study opened. I feel this study is a gate to something very big happening in Israel. It makes me happy that the healthcare system in Israel is growing in stem cell therapy.

Stem cell therapy has the potential to help syndromes, illnesses and conditions that were either untreatable or required much more invasive treatments with harsh side-effects and low success rates. Our blog mainly focus on the benefits stem cell and cord blood for autism and epilepsy, since we saw the incredible results with our own eyes. However, the list of conditions that can be treated overseas, in the private sector is incredible, and we would love to see our public healthcare system making this treatment routine.

P.S.

We are hoping to create a clinic in Israel, where parents of special needs parents will receive guidance one understanding and raising special needs children. Our blog will probably undergo some changes soon. We will be taking a break from blogging to finalize the new design and launch our new plan.

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Seizure monitoring devices – from babies to adults

In this post we will talk about seizure monitoring devices for epileptics. Is there a device that detects a seizure and alerts in real time? Which devices are suitable for adults and which for children? What is a pulse oximeter monitor, and how is it used? How does this type of monitor help epileptics? Do you need a webcam in your child’s bedroom?

I tested two devices that will work for babies, which I will cover in this article. I also collected recommendations and information from the web, about devices that will work for older children and adults.

What is epilepsy and why do you need a seizure monitoring device

Epilepsy – a condition in which a person suffers from a chemical imbalance in the brain. The imbalance causes a miscommunication between brain cells. This may lead to several symptoms, such as lack of awareness and behavior changes.

To be diagnosed with epilepsy you are generally required to experience at least two seizures. Not all seizures are considered epileptic seizures

Epilepsy may be represented with different type of seizures. Some seizures are mostly harmless, and some are life risking.

There are many types of epilepsy syndromes, and many types of seizures. Epileptic seizures may start due to genetic predisposition, physical damage caused by trauma, tumors or malformations.

When brain cells are overactive, they can harm themselves, and the cells around them. Following epileptic activity, brain damage can expand. Prolonged seizures can cause physical damage. Convulsions that cause strong limb deformities can endanger a person’s physical health.

Therefore, once the epilepsy has been diagnosed, you will receive a recommendation for balancing medication. Taking your medication is the most effective way to control seizures and prevent Sudden Unexpected Death in epilepsy (SUDEP).

About 30% of epileptics are drug-resistant, and can not control seizures with medications.

How Seizure monitoring devices can help prevent sudden

Seizure monitoring devices can include pulse-oximeters, fall detection bed sensors, motion sensing cameras, and specially designed wearable devices. Wearable device technology is becoming more and more advanced. It provides different solutions, that I will cover in this article.

Wearable devices may include pulse-oximeter capabilities, fall detection or additional sensors. These can be used to detect abnormal activity. You can have them sound an alarm or send a warning to a phone. Many devices store data in an app that can be shared with your doctor.

How to diagnose and deal with epilepsy

Once you have first identified that you/your child might be having a seizure, go to a hospital immediately and begin the investigation process. Convulsions may not be epileptic at all and require different treatment.

There is also a minimum of two seizures to be considered epileptic. Epilepsy diagnosis will generally involve an EEG.

If you were diagnosed with epilepsy, the neurologist will recommend medication. This is designed to produce a chemical balance in the brain.

There are other ways to treat epilepsy and it is recommended to read about the treatment that helped us cope with seizures. Before attempting any alternative seizure control, you should be consult a medical professional.

It is important to understand the basics of epilepsy and to be prepared. All family members should know how to behave during seizures. Contact us to book training on how to behave during seizures.

To prevent severe damage or death from seizures, it is also advisable to monitor epileptic activity carefully. There are many options monitoring seizures. How do we choose from the enormous variety of seizure monitoring devices for the most suitable device for us?

First, the monitoring devices that are suitable for epilepsy can be divided into categories:

  • Monitors – Vital signs (Breathing and Pulse) Monitoring Devices
  • Abnormal Sleep Displacement Devices
  • Wrist bands and Smart Watches

* Disclaimer: Most of the links on the site to Amazon.com or AliExpress.com are sponsored links. If you purchase the product through them, we receive a commission. It does not affect the price for you.

Experiences from the emergency room and hospitalization of the baby after we detected seizures

When our fourth child reached the age of two weeks, we began to notice seizures. At first he rolled and crossed his eyes. I told Shira that it looked suspicious. We agreed to continue to observe, because maybe it’s okay for his age, even though one of his brothers is epileptic . Then, while I gave him a bottle, he froze. Just stopped and stared into space for almost a minute. He did not respond to touch or sound. I now knew, he was seizing.

We ran with him to the hospital. The doctors forwarded it in a shocking variety of tests. In the emergency room, they have to make sure that there are no other factors that could cause those symptoms, such as meningitis. Finally, of course, he had the EEG. This confirmed what we suspected – epilepsy.

The other tests also revealed a thyroid problem, and a heart problem (PFO usually goes away on its own, with time). This too requires supervision and monitoring.

The baby’s first EEG at two weeks

Discharge from hospital, only with respiratory cardiac monitor

We were discharged from the hospital with a prescription for an epilepsy medication, which is suitable for infants. We also had to monitor the baby with a pulse-oximeter.

This device monitors vital signs: pulse (heart function), and saturation (oxygen level in the blood. This reflects the lung function). By monitoring the vital signs, we can try to detect epileptic activity.

During a seizure, the heart-rate usually rises or falls abnormally. If the saturation decreases – the seizure is causing respiratory arrest. Besides, if the baby is generally ill, it is also advisable to monitor the sturgeon in sleep.

I started looking for where to borrow, and came across Yad-Sarah. They did have a device. Unfortunately, the equipment they had was outdated and partial. I was given a device that looked like an old typewriter. They Equipped me with stickers to monitor the heart-rate. But they didn’t have the pulse oximeter attachment.

I couldn’t find another place that has a pulse-oximeter for borrowing, so I started looking for places to purchase from.

Where do you start looking?

So one of the problems that you are probably already aware of, is the huge variety that exists on the internet. What is the best device? Is the price fair or high? Which type is most suitable to my needs? How do I know what will work?

I really got lost. Luckily, Shira understands medical equipment better than I do. She knew what to look for. She did not have a lot of strength after the birth and all the hospital hassles with the baby. But it was urgent and she helped me with the search.

I continued my search after the medical condition became a little more stable. And I also collected a lot of recommendations from Facebook users. I also bought two seizure monitoring devices to make sure they work well.

With the information I gathered I will try to narrow down the options. I hope to provide you with an easier choice. There is still a variety of devices that can be used to monitor seizures. Different types of devices especially for different age groups.

If you have any other recommendations, write to us in the comments.

Different types of monitors

We started on Israeli sites, and I found respiratory cardiac monitors of all kinds, in the price range of 450 NIS to thousands of shekels. These prices are high, and although it was urgent, I was looking for options for ordering from abroad. The variety on AliExpress.com paralyzed me, and in any case it takes over a month for something to arrive from China, if at all.

In the meantime, Shira has found the Owlet – a wireless pulse-oximeter monitor for babies.

As you can imagine, the price is high.

However, it is a unique product. the possibility of monitoring the child without cumbersome and dangerous wires is probably worth the investment. (Provided it works as advertised).

In the end, I also purchased a wired device through the Chinese site so I can make a comparison. I wanted to make sure the wireless device was accurate enough for me to give a positive review.

What we found:

Different types of pulse-oximeter monitors

First you need to distinguish between measuring instruments. You can buy pulse-oximeters at any pharmacy. These are worn on the fingertip. The fingertip pulse oximeter is mostly for adults, but can used for older children.

Most fingertip devices are suitable for one-time measurement, and an extended period. Therefore, these will not be suitable for seizure monitoring.

You can also find a device for measuring blood pressure and pulse with a sleeve, it is cheap and available at pharmacies. But it does not measure saturation, nor does it measure on extended period.

Both of these did not meet our requirements for adaptation to the baby or for monitoring during sleep.

In the end we purchased two devices. The first, a wired monitor with a baby, child or adult attachment. The wired device allows measurement over time, and buzzes when there are anomalies. It’s a bit awkward to see the measurements history, but it also has advantages over the wireless.

The second, is the owlet wireless monitor. To save money and time, I bought a second-hand device on eBay. This was a mistake because the socks that hold the sensor are torn. Shira sewed an alternative sock that does an excellent job. With some adjustment we can check the quality of the sensor on the older children. The sensor itself, it turns out, can work on adults as well.

Both of the baby seizure monitoring devices seem to work similarly. If the baby gets a seizure it should be represented in the vital signs

How pulse-oximeters can be used as a seizure monitoring devices for epilepsy

When a person has an epileptic seizure, heart rate and saturation are affected. If the breathing is stopped or abnormal during the seizure, the saturation will go down. The pulse will spike, rising or falling abnormally. We will receive an alert for these changes.

It is not possible to know whether precisely if the spikes in saturation or heart rate was due to a seizure. However, monitoring over time can give a slightly clearer picture of what is happening.

Beyond pinpointing times of seizure times, the information from seizure monitoring devices may be used to make medical decisions with pediatricians.

The classic wired pulse-oximeter monitor for long-term monitoring

The monitoring devices that are on the market come in many of forms. There is a wide variety, from simple to sophisticated with mobile apps. Reliable devices can be found at Online shopping sites for example on Amazon , and AliExpress .

Benefits of the wired pulse-oximeter monitor:

  • Less sensitive to movement
  • There are a variety of capabilities and prices
  • You can connect to electricity and not rely on a battery that only lasts overnight (not recommended because of the danger of entanglement)
  • I can adjust the levels of vitals signs to receive the warnings
  • Attachments are suitable for baby, child or adult

Disadvantages of Wired Monitor:

  • The wires are cumbersome. We lift the baby a lot when he is not relaxed, and it is not comfortable for him to be connected to the device, especially if the device is connected to electricity.
  • The wires are dangerous. You must take precautions that the baby does not wrap the wires around the neck. Our baby is not rolling yet, but it is something that needs to be checked so that it does not happen. The thread is relatively short, so this should not be possible, but care should be taken.
  • Most devices do not have a connection to an app that shows convenient data analysis

How the wired monitor works

Attach the sensor to the child’s leg with a strap. The sensor connects to the device with a cable. The device runs on batteries or a USB power connection.

It monitors and alerts in real time if the vital signs fall or rise above the desired levels. You need to set up basic settings, such as date and time, and set the device to store data.

The device I received, shows the child’s vital signs at levels similar to the wireless device.

The device monitors saturation and pulse, slightly better than the wireless device during wakefulness, but both have difficulty making measurements as the child moves the leg. At night the function of both is stable and similar. A clear advantage of the wired device is the ability to control the values when the device sound an alarm.

Wireless pulse-oximeter – Owlet Smart Sock 2

The first device I have purchased and already used is called Owlet Smart Sock 2. Shira received a recommendation for it, but it was not available for purchase outside the US, through the manufacturer’s website. I found Smart Sock2, second-hand on eBay, and it arrived within a week.

I only learned about the option of international purchase from Amazon later.

What comes with the Owlet Smart Sock 2

The device comes with a base that connects to the home Internet network, a wireless sensor that monitors the vital signs, and three sizes of socks to hold the sensor. A pincode for the app, at no extra charge. The base connects to the home internet network in wifi. The sensor connects to the base via Bluetooth. It is attached to the baby’s leg with the help of the sock in three sizes: 0-2 months, 2-6, and 6 to 18 months.

A webcam is optional with the Smart Sock 3, or as a stand alone product.

The disadvantage of a second-hand order is that you might not receive exactly what you order.

I got a proper base and sensor. The small size sock was in good condition. However, I did not get the medium size, and the large sock was too worn out.

Shira sewed an alternative sock, which does the job. It also allows us to test the sensor on ourselves. The device is not exactly the right size for an adult, but manages to register data if you place it on the hand or foot at the right spot. I think it is possible to stretch the use of the device even for adults with a bit of sewing.

If your child is already older than 18 months, it’s best to just get a different option. I haven’t tested these first hand, but I will cover some options from research.

Owlet Smart Sock 3

Unfortunately, as I was pressured to get a device quickly I didn’t have time to do enough research. I did not know about the option of purchase through Amazon. Advantages of the Owlet Smart Sock 3:

  • More sophisticated monitoring device
  • wireless charging
  • socks in two sizes that are more comfortable to put on
  • Possibility to purchase a webcam (with temperature sensor) that interfaces with the app

*A webcam that records together with the pulse-oximeter on the same application is a great advantage is seizure monitoring devices.

How to use Owlet Monitor device

Unlike a device without an app, I had to sign up for the company’s service (at no extra cost to the device). The device needs internet access through the Wi-Fi network. The wired device also had some settings I had to make, but it was less complicated.

I contacted the company via the website chat, and customer service responded quickly. They helped me install the device. (There were instruction sheets in the box, but I got stuck somewhere when I tried to connect to the network).

After everything is set up, you can put the sensor in the correct sock size. Wrap the sock around the baby’s foot according to the instructions.

Now wait for the baby to fall asleep.

The device only works when the baby is not moving. You will see that is says the baby is wiggling.

It will also have a hard time getting the readings if you are in a rocking chair.

When the baby is still enough, device measures data. You will get an alert in real time if the pulse or saturation drops below the minimum.

After collecting data for at least one consecutive hour, the app can show you an analysis on sleep quality, heart rate, and saturation.

To use Owlet as seizure monitoring devices, you can share the data with your doctor. If there are many spikes in heartrate or saturation, it may hint that there are nocturnal seizures.

Additional features:

The device saves data even when it is not connected to the internet. It uploads the data to the app when the internet connection is restored. We had internet issue recently, so we checked out this feature in real time.

If there is no internet connection, the Owlet can still be used as a monitor. You will still get an alert if the vital signs measurements are too low.

It is possible to purchase the basic device with a webcam. The price is higher accordingly, and simple webcams can be purchased cheaper. Yet, it is convenient to have the camera in the same interface, along with the data from the monitor.

In my opinion the infrared camera is a vital part of seizure monitoring devices.

Benefits of a Wireless Monitor

  • There are no cumbersome and dangerous wires attached to the baby. The base should be placed away from the crib so that the baby does not get entangled in the charging cable.
  • It is easier to dress the baby. The threads are tangled with the pants. It is not possible to put on certain clothes
  • An app that shows statistics on the quality of sleep at night. Works not bad.
  • It is easy to take a screenshot of the data and share with the doctor for example.
  • If you get the camera, it is easier to compare vital signs data and the visual recordings

Disadvantages of a Wireless Monitor

  • Requires charging after 8-12 hours. If you want to monitor the baby during the day and also at night, you will need to adjust the charging breaks accordingly. We only jump at night, and not always because the baby is relatively balanced.
  • The device is slightly more sensitive to movement. It will not monitor if you rock on a rocking chair for example.
  • The minimum alert values ​​are lower than the recommended in my country. 80% saturation. 60 pulse. And you can not adjust these values.
  • The technology is not yet widespread, and I have not seen any more devices that are suitable for babies.
  • The owlet is suitable for babies up to a year and a half only. Adults can use seizure monitoring devices such as a ring, Bracelet or Watch . I did not test the wireless devices for adults. (You can also sew a larger sock, as Shira did)
The blue wrist band is the custom sock Shira made instead of the worn out original

Additional Seizure monitoring devices options

We have not personally tested the devices in the next section. But the need for additional research came from the readers.

Since most of the epileptics aren’t babies, the rest of the article will be dedicated to Seizure monitoring devices for older kids and adults.

Webcams

There are a variety of webcams. As I mentioned earlier, one of the options is a camera that connects to the same interface of the monitoring device. There are cameras that can be purchased separately. Cameras With a mobile connection .

And there are more sophisticated baby monitoring cameras with motion and temperature sensors . ** For the camera in the previous link, you might need to buy a special baby sleeping bag separately so that the camera can detect breathing.

However, I did not purchase this specific camera, so I’m not sure if it has any value for parents of a baby with epilepsy.

These are many monitoring devices that were not built specifically for epilepsy. However, this data may be used to monitor seizures more intelligently. I contacted several companies for more information, and I will update in their answer.

I also found a recommendation for a camera built specifically for epilepsy to detect abnormal movements.

It is important to note that a camera does not give medical data but only shows an image in order to complete the visual information of what happened while a monitoring device was working.

If there is a report in the app about abnormal pulse or saturation data, you can watch the camera and try to see what happened at that time.

Especially while parents sleep, we have no idea what is going on with the child. If the child has a seizure during sleep, it can sometimes be seen on the camera. Depending on the angle of the camera, and the cover on the child. This allows better monitoring, especially if most seizures occur during sleep.

Mattress seizure monitoring devices: Breathing or fall warning

There are sensors that are placed in under the crib or adult mattress. These are supposed to alert you to abnormal activity. For example, AngelCare or BabySense for babies or Writhings for adults.

These devices alerts when the baby does not move at all for more than 20 seconds. It is sensitive to breaths and movements, so if the baby has stopped breathing you will receive an alert. It will not necessarily help jump spasms but it is another option without wires. The device is placed under the mattress, so there is no need to attach anything to the baby.

I would not recommend such devices for monitoring for seizures. The type of data they collect does not offer enough information on seizures. Monitoring pulse and saturation gives better insights.

In addition, these devices are often overly sensitive to the wrong type of activity. They beep loudly if the baby rolls off. This could wake the baby and the parents quite a few times unnecessarily.

I received a recommendation for the Emfit, which is supposed to be adjusted to detect tonic-clonic seizures. It might be worth looking into, but was not something I could check.

Adult wearables

When it comes to wearable seizure monitoring devices for adults, there are is a large variety. There are several products developed especially for epileptics. You can even use a smartwatch to monitor your vital signs.

Do extensive research, and note that the smartwatches are not medical devices. The use of such devices is not intended to replace medical follow-up. However, the data that your smartwatches collect may help you better understand the nature of your epilepsy.

Empatica Embrace2 Bracelet

First on the list, are the devices of Empatica. Their bracelets has been specially developed as seizure monitoring devices. Unlike smartwatches, the Embrace2, does have FDA approval as a medical device.

The Embrace2 monitors abnormal movements that may be tonic-clonic seizures. It doesn’t contain a saturation or a pulse sensor. It does have sensors that other devices don’t (EDA).

The watch works on the basis of motion sensors, temperature sensor and EDA sensor. When the device detects suspicious movements, it will crosscheck the other sensors. It crosschecks body temperature and electrical activity in the skin to see if the activity is appears like a seizure.

Many people recommended the bracelet, but it is not for everyone. Contact Empatica to find out if Embrace2 is suitable for your type of seizures. Consult your neurologist before purchasing.

* For US residents: A prescription from a neurologist is required to purchase the Embrace2.

If you do get tonic-clonic seizures, you will want to get help ASAP. Therefore, the Embrace2 is a great solution for this.

The Embrace2 monitors movements that may be seizures. If a seizure is detected, it sends an alert to the mobile device.

The Embrace2 costs $250. You also need to choose a monthly service cost. This starts at $ 9.9 depending on the number of people you want alerted.

Reader reviews on Embrace2

One reader told me that her son realized, at age 11, that his Embrace2 sends alerts when he erases vigorously on paper during school. He took advantage of his discovery to get his out of the school. His Embrace2 sent alerts to his parents. He got out of school several times until they realized what was going on.

Other readers said the Embrace2 did not suit them. This is because it does not detect the type of seizures they were experiencing.

Apple Watches and Seizure monitoring Apps

Apple has equipped their newer edition watches with a variety of sensors. I will refer in the article to 6th generation Apple Watch, according to the information that appears on the Apple website. Before buying an older generation watch check if it is also equipped with jump sensors.

The Apple Watch has the ability to measure saturation, pulse, and motion. Fall detection using the motion sensor can be used to send alerts for assistance.

*The Apple website states that the device does not meet the requirements for medical devices.

Our readers mention that the watch alone was not enough. To turn Apple Watches into seizure monitoring devices, there are apps need to be installed. To that end, I’ve found recommendations for two apps so far: SeizAlarm and MyMedicWatch .

These apps integrate the watch’s monitoring capabilities to produce more comprehensive tracking. Although it also adds a monthly fee, it allows for another option, especially if you already have such a watch.

Android Watch

I haven’t received any recommendations for Android watches so far. However although the MyMedicWatch app is also suitable for Android systems.

If you already have an Android watch that fits the specifications of the app requirements, it is worth checking out. We’d love to hear from you in the comments if you have experience with Android Watch’s monitoring capabilities for epilepsy.

Wireless pulse-oximeters

You can find a variety of pulse-oximeters in the digital market websites. What you should look for is comfort, and data analysis.

For example, this ring device on Aliexpress.com, looks a lot more comfortable than the much cheaper finger clamp type. However they both have apps for data storage and analysis.

These type of devices work while you are sleeping, similarly to the devices I tested for the baby.

To summarize

The purpose of the post is to introduce to you the options available in seizure monitoring devices. I want you to know why they are important, and how to use them.

I still have some testing to do, before I can say with certainty what works.

In addition, I would love to hear from you if you have a positive or negative reviews for the devices mentioned in the article. If you are familiar with devices that I did not mention, please write it in the comments.

There are a variety of different types of jumping devices that can be used for epilepsy. You should check before purchasing if they can match the type of seizures you are experiencing. Not every device is suitable for every type of epilepsy.

In any case, consult your neurologist before purchasing to make sure there is a fit. The information in this blog does not replace medical consultation.

It is advisable to equip yourself with the right combination of devices. If the seizures are mainly in sleep, it is advisable to have both a webcam and a heart rate monitor for breathing and breathing. If you have epilepsy that causes falls, you should use devices with fall detection, such as an Embrace2 device or a smartwatch.

Additional Sources

3 Revolutionary Epilepsy Watches!

https://www.empatica.com/store/embrace2/

https://imotions.com/blog/eda/

Home

http://www.mymedicwatch.com

https://owletcare.com/


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How to parent a typical child with special needs siblings

Their sister.” “What an amazing girl.” We hear these words a lot. Spoken with admiration by the” educational staff at the various institutions. Friends and family will say them too. But raising a typical child with special needs siblings, requires special consideration as well. It’s a horrible thing to put in writing, but her piece of mind is probably going to be very important to her siblings’ futures as well. But even if it this is not a consideration she deserves happiness. In this post we will talk about parenting the typical child with special needs siblings. What kind of special attention should be devoted to the typical child, who also deserves a happy childhood.

Raising a happy typical with special needs siblings (autism and epilepsy)

Our 6-year-old daughter was born into a slightly different home. All her brothers are children with special, and quite complex needs. Before she learned to say chocolate she knew how to say autism. At her age she is already an expert in detecting seizures. The girl chose to bring a book about an autistic girl to show-and-tell at preschool. She naively told her peers that she has two such siblings. A girl who knows how to mediate to her siblings from birth, and absorbs their peculiarities with the patience of a Tibetan monk.

Sharing her personal story in class

Raising a healthy girl alongside three unhealthy or neurodiverse brothers, requires special attention. They have to be constantly monitored and attended to, but we must never forget that she has needs as well.

Learning to notice her even during a sibling’s crisis

Above all, one of the hardest things to keep in mind all the time is how the current crisis is affecting the “typical” brother. And it definitely requires practice. Seeing your brother undergo medical trauma over and over again affects the child’s psyche. The distance from the parents and the difficulties, may impact on the other children in the home.

It is important to talk to them about the issue, to help them calm down. We need to take care of their emotions when needed. And they should be provided with pleasant experiences alongside those harsh ones..

How to handle disappointment from the way the siblings behave

Our daughter had heart breaking questions at a very young age. “Why doesn’t my brother say he loves me? Why doesn’t he hug me?”

Her need to hear that he loves her was enormous. It broke our hearts to try to explain that he doesn’t speak that language. He would bite her so often. Fortunately, this improved so much after her brother’s stem cell therapy. He was much less violent. For the first time, he began to give her (and others) more typical signs of love.

Today, two years after we started these treatments, he even invites her to play with him

Teaching an autistic siblings how to show love

Signs of love are essential for all of us. They are especially important if your children participate in caring for a special brother. This will likely happen naturally by virtue of being in the sibling’s environment. It will be easier, if you manage to produce alternative language between your children.

Our eldest was non verbal. He hardly spoke until the age of five and a half. His sister is a year and a half younger than him. His brother a year and a half younger than her. Three children in three years and a fourth four years later. She is sandwiched between two autistic brothers. Even her baby brother, who was born in November was quickly diagnosed with epilepsy. As such she does not get one “normal” brother.

And so, in times of desperation, we leaned into applied behavioral principals. When she asked for a hug from her big brother, we “forced” him. We wrapped his arms around her, and scripted the words “I love you” to him. We created act of affection in an artificial way. She would receive positive feedback from him. He would learn this is an expected behavior. He didn’t resist hugging her, so we understood it was permitted.

The importance of a good bond between siblings

Creating positive feedback between typical and special needs siblings is very important. This is especially important at young ages when sibling relationships are built. When bonds are not nurtured in childhood – the bond in adulthood will be damaged. Some of these siblings will be caring for the special sibling in adulthood. Consequently, it is worth investing resources in childhood and strengthening the bond between them.

If they have good relationships it will be easier for sibling to help sibling. It is easier for us to help a loved one. It is much harder to help someone who is perceived as a burden.

Childhood is the best time to strengthen brotherhood. Encourage them to see the humanity and good in the special sibling. Show them what each sibling contributes to the “family package.”

For example, we create joint activities for them. This way they have lots of positive experiences in childhood.

We want them to remember how happy they were together as children.

Everyone has their own private spots around the house. However, they also have a special, shared places. For instance a bulletin board to display work from school or home together.

Emotional difficulties

Siblings will always have emotional difficulties, even if you were the perfect parents. Just being in the same house for years will create clashes. Raising a mix of typical children together with special siblings raises different emotional difficulties.

Give these difficulties room for venting. Talk about them with the child according to their age.

Quite a few times my daughter and I talk alone about her difficulties the boys. She is aware that they are the way they are because they have autism. There are things they do, not because they do not like her, but because that’s how they react with the autism.

It’s hard for her to think they’ll never be like her.

In such cases, we explain to her that it is difficult to know whether they will grow up and be “like everyone else” or not. We explain that we just have to make an effort to help them. She is constantly reminded that just as she grows up, they also grow and develop only differently from her.

Giving legitimacy to a family with a special child

Explain that it’s okay to be different.

Every family is different and every person is different from others. Just as there is a family with one parent, two parents of the same sex, there are families with different types of children. There are families with twin children, or children of only one sex, and there are families like us with special children.

It is very common for typical children can feel that it is “wrong” that they are the only ones with special siblings.

Explain that typical brotherhood with special needs siblings is a common and legitimate situation. Turning it into a normal situation makes it easier for children.

It is important to remember that alongside every child’s need to naturally be unique, there is also a tremendous need to integrate into society and be like all children. The very explanation that this type of family is a “normal” family, despite the unique situation, is important for the child, so they can feel they are integrating into society successfully.

Emotional compensation for the typical child with special siblings

We are often forced to wipe away tears at our home as a result of clashes. Sometimes even compensating her with extra one-on-one time with us. For example, buying ice cream or baking together. She needs a few more tokens of love and reassurance from us.

Like any child with unpleasant experiences, typical children with special siblings need comforting.

It is not always possible to change the behavior of the other child. Therefore, it is important to remember, that although the special sibling sometimes has unpleasant behaviors, the typical sibling should not be absorbing these behaviors without any consolation.

Consolation does not have to be a gift bought with money. It can be a simple hug, to provide comfort after being bitten. In fact, the only thing that is important, is that the consolation helps on the emotional level to overcome the distress that was caused by the sibling’s behavior.

For example, our eldest son would push or bite a quite often. His way of saying he is not interested in physical closeness to others.

Our response method:

  • Explain to our daughter about her brother’s need for physical space in a way that suited her age at the time.
  • Provide her with an alternative way to get what she wanted. For example, she wanted him to participate in a game with her. We created an activity for them that they could both do at the same time next to each other. This way she will feel that he is playing with her despite the differences between them.
  • Comfort when she feels hurt by him. This includes a conversation about the situation that occurred, and a joint parent-child activity that can include anything that involves one-on-one attention. For instance: reading a favorite story, sitting in a hug on the couch or baking activity, etc .

Emotional therapy at a young age

At the moment, emotional therapy, because she is young, focuses on indirect therapy such as dance class and therapeutic horse riding. She gets parent time in activities of creating, baking and reading together. During one-on-one time we talk about topics she is interested in talking about.

As they grow older, it’s time to move on to other sources of support. For example, sibling groups, emotional therapists like psychologists, art therapy and more. Emotional therapy can still be in a conversation between the child and the parent. One-on-one time can be regularly allocated for venting emotions or therapeutic activities such as creation and art for the issue, a trip outside and more.

walk in the park

Sibling care in adulthood

We do not want our daughter to feel that she was shaped to be a caregiver for her brothers. We want the help they get from her in adulthood to be from her choice. That’s why we’re focusing on strengthening the connections between them right now.

Even if your children will not be the brother’s primary caregiver, at some point you will probably need to transfer authority and guardianship.

The typical child is likely to have an active part in caring for their siblings in adulthood. Guardianship will pass to our children, and they will make the decisions. Therefore, it is worthwhile to continue to provide emotional support in adolescence and adulthood.

Airing out outside the house

One thing that’s very helpful for young typical children with special needs siblings, is going out. This gives them a sense of “Normalcy” for a few moments. Time outside the intensity of the special siblings. Rest from the natural need to help their siblings.

A visit to friend. Going to the grandparents alone. Spending time alone with a parent.

Meeting their peers

One of the outlets that was destroyed during the corona pandemic was peer group. Your child’s age group in which they are a part of, and where all the social tasks that the child needs to develop take place.

For most of us it is an educational framework. A child who does not have typical siblings and is deprived of his or her social framework as well, is subject to additional emotional distresses.

My own corner

So many things in the home are “nationalized” according to the special needs. The living room becomes a therapy room. There’s a certain set up for the kids’ and parent’s bedrooms. The kitchen is full of locks and barriers.

It is important to designate a spot for your typical child that is only theirs. Our daughter has her own “princess” table, and only she plays on it. Is her private anchor, and is dedicated only to her.

A special corner is a critical thing.

It can be a drawer, shelf or special bag. Anything or anyplace that allows for being themselves.

They need something private in a world where everything else is devoted to another person. Especially when they have to bend to the needs of another. (Something that is not really easy for children).

“The special corner” is a private space characterization method that is good for any child. It should also be given for the children with special needs as well. When children reach an age where privacy is important, (for every child it comes at a different stage) one way to allow them privacy is to allocate “the special corner”. Our eldest son (now 7 years old) has a small suitcase, where he puts his important belongings (currently a building blocks game he especially likes). This is the way for him to declare – “it’s mine”!

Her princess table

To summarize

Being a typical child with special needs siblings is not a simple situation. An effort should be made to give them their place. Do not turn them transparent because they don’t have special needs. She too deserves a happy childhood.

As a sister to siblings with special needs, our daughter is given countless tools for coping in the world, which certainly would not have been given to her in any other way. These include a more developed sense of compassion, sympathy, empathy and inclusion. She has learned the ability to delay gratifications. And she has the ability to “hear” the other’s need, even when they are not speaking.

But all of these good traits come with an emotional price to pay. This situation comes with quite a few difficulties.

The desire to sometimes be first priority for your parents should occasionally come true. Every child needs to spend time with their parents. They need warmth and love and a feeling that they will be accepted in any situation, and be seen.

This need is so natural to all of us, but gets pushed aside quite a bit.

In families like ours, parents must make a conscious effort, take into account the expected difficulties in the unique situation created, and create an emotionally healthy place for the child’s development in a family with siblings for children with special needs.

Suggested Articles:

Should I take my child for autism diagnosis?

Stem cell therapy for epilepsy

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Life without seizures – treating epilepsy

In March 2019, we learned that there is a possibility for life without epileptic seizures. It was about two weeks after an experimental treatment at a clinic in Russia. We realized that the child was not as usual. He had increased appetite, and more energy. He felt more “present”. We hadn’t observed seizures since we got back. Usually he had about 10 absence seizures a day. The doctor in Russia did say that the stem cells might actually help epilepsy. More than that, the treatment led to a complete withdrawal of the epilepsy. We were shocked that this actually happened. At least for now we don’t need to sleep with one eye open, for fear of SUDEP.

In this article, we will lay out the conventional methods of trying to balance epileptic activity in the brain. These treatments include: pharmacological, nutritional, surgical, or with a pacemaker. In addition, we will explain in a nut shell, how the experimental treatment we did offers another option for life without seizures. A possibility of epileptic seizure free life, without the side effects of the other methods.

Life without epileptic seizures

Just to be clear, this article does not replace medical consultation .Before making any life style changes, including participation in the experimental process described in the article, consult with all the necessary medical factors. Consult the doctors at the research institutes, and your regular neurologist at the very least. Read original official medical articles to make sure the treatment is safe.

Enjoying life without seizures temporarily 

Between March 2019 and November 2020, our lives were completely seizure free. A short time ago when we had a new baby. Almost immediately, we realized we had to deal with a sick child again. We had just started to feel some kind of normality. But we were still being careful. Worried that our eldest’s seizures might return at any moment. The clinic doesn’t have enough data to tell us if it’s permanent or temporary. It was about a year and a half from the last seizure. We were getting used to life without seizures.

Yes, the new baby has epilepsy too. We’re more experienced, and we understood he was not okay, and needed to be checked. The EEG shows a small focal point. The Neurologist said, “it’s a good thing you came so early. If we can balance him now, it might not develop into a dangerous situation, like your eldest.”

For a brief moment in history, we didn’t have to run from E.R. to E.R.. To make sure the children will complete schoolwork that was missed during difficult times. We didn’t need to worry about stocking up on enough medical equipment. We didn’t need to switch between more and more ineffective medications. Since the summer of 2019 we stopped giving epilepsy meds altogether. We’ve already gotten used to life without seizures, and now we’re epilepsy parents again. At least until the baby becomes old enough to try the same treatment.

Life with drug-resistant epilepsy

 

As we mentioned, for our eldest, there are currently no seizures since March 2019. To understand how good is life without seizures, you also need to understand how terrifying it can be to try to raise a child with active drug-resistant epilepsy. We observed about 8-10 absence seizures a day. “The silent seizures,” the ones where the kid just stops and stares into the air. He also had 2-3 myoclonic seizures a day. A hand or leg will twitch on one side of the body, but not completely unconsciousness. And during the more difficult periods, the medication that helped for a few months stops affecting. He would also have tonic-clonic seizures. He would have full body spasms and sometimes lose consciousness, at least one a month.

We found ourselves in the E.R. so many times we lost count. Every seizure, from mild to hard, leaves behind neurological damage. Beyond this, the immediate dangers of epilepsy are cessation of breathing or head trauma from falling. Several times, he also simply failed to recover from a seizure and needed CPR until the body recovered.

Identifying early signs

As with the newborn, even when the big one was a baby, we saw signs. Unfortunately, the medical and development professionals who saw him did not act accordingly. They heard our testimony, and didn’t realize that what we were describing needed scrutiny. “You’re new parents and hysterical…” Never mind that the baby’s mother has medical training. She had just completed a nursing degree, and was already working as a nursing intern.

 

A child who can’t relax, and sleeps for a total of only an hour and a half a day. We described being occasional cross-eyes… Needs to be sent to be tested. But we were new parents, and we ignored our gut feelings. We listened to the professionals, who didn’t recognize a problem. And that’s how we got to a tonic-clonic seizure at 2 years and 8 months old.

 

What a huge difference, to go into the E.R. with proven experience five years after…

As soon as the baby’s epilepsy was identified, we contacted the institute that treated the big brother. Unfortunately, we’ll have to wait until he reaches the minimum age and weight.

This time the baby got an EEG immediately

Epilepsy in the Education System

 

Most children frequent the public school system, even if they have complex medical problems such as epilepsy. But the school system in Israel struggles to deal with medical problems. We learned this the hard way, when our eldest was diagnosed as epileptic.

It started with our special education kindergarten. Our boy did not receive a medical teacher’s aid, even though he deserves it by law. The explanation was that there was a large team, and the kindergarten was supposed to assign him a staff member. Or there’s always enough staff members, so there’s always a pair of eyes on him.

This is not really true, because they include therapeutic staff in the count. Those aren’t there all the time. And in most cases, kindergarten staff don’t get trained on proper conduct during a seizure.

 

Training the educational staff to deal with epilepsy

You have to insist that the child gets his rights, including a medical teacher’s aid. Regardless, you should make sure the staff understands epilepsy. Make sure they get training and tools to cope in an emergency.

One day, we got a call from the kindergarten teacher, “Listen, he’s been asleep for five hours and they can’t wake him.” The boy came back from kindergarten with a bruise on his forehead. It didn’t occur to teacher to call earlier. We got an explanation only when we picked him up. He fell asleep during the day, slept five hours straight. Thought he was really tired and shouldn’t bother us. No one even noticed he had taken a blow to the head.

Shira realized that we had to take matters into our own hands. As a nurse, she could give them training. We put some guideline pages in several places in the kindergarten.

Shira gives the training to kindergartens and schools at least once a year, and every time new staff members come in.

How to treat epilepsy and achieve life without seizures

There are several different tests that a person will need to do, to pinpoint what causes the seizures. After a neurologist confirms that it is in fact epilepsy, the journey for neurological balance begins. We want the neurons that are sending bad electrical communication to work properly. Each person’s body is built a little bit differently. We react a little differently to different types of external interventions. Neurologists, as modern medicine students, rely first on empirical knowledge that exists for modern medicine. That’s why the first line will be finding a modern medicinal treatment.

Medicinal treatments

There are a number of medicines you can try. Some have more severe side effects than others. Their common goal is to reach neurological balance. To get the epileptic epicenters that shut down and wake up uncontrollably to stabilize. Medication can be used to stop seizures. There is even a small percentage of epilepsy patients, who have achieved life without seizures. After finding the right medication, with years of persistence and patience, their neurons learned to stay in balance. After reaching sustained balance, some epileptics can stop using medication.

With most patients, it takes many attempts with various drugs and different dosing find to balance. Many attempts to keep the epicenters in the brain that cause seizures turned off. But there are rare cases when the patient grows older, these epicenters shut down and disappear. The patient can be carefully removed from medication. This is more common with children than adults. In adolescence, if there is no return of seizures, then we can settle for a routine follow-up every few years. For most patients, it’s a lifelong treatment.

Drug-resistant epilepsy

About thirty percent of epilepsy patients do not respond to medication. After trying to reach neurological balance with four different medications, the patient is considered to have a drug resistant epilepsy. In this case, the neurologist may recommend trying a drug combination and/or more severe medications. In Israel, after trying four different medications, the patient may request a medical cannabis licence.

Severe medications have very unpleasant side effects, but unbalanced epilepsy can lead to severe damage and even death. Pre-stem cell therapy, our eldest son was considered to have drug resistant epilepsy. No medication we tried, including cannabis, had any significant affect on the epilepsy.

Ketogenic diet

One of the more ancient methods of controlling seizures is through nutrition. Since the 1920s, the ketogenic diet has been considered the most effective of dietary changes for this purpose. The ketogenic diet is very difficult to implement. Even strict patients who succeed don’t always report improvement.

Despite harsh demands, it is worth a try. Consult your doctors, before trying. After a few months, some people report reductions in epilepsy events. And there are even reports of life without seizures, following the strict ketogenic diet regimen.

Our eldest was already naturally eating Ketogenic food, because of his strict food preferences. Therefore, it was easy to extract the food items that are not included in the diet. Unfortunately, this also gave no improvement in the nature or frequency of seizures.

 

Medical Cannabis

In Israel, a drug-resistant epilepsy patient can request a medical cannabis license. As an autistic child, our son was already licensed to use medical cannabis for behavioral support. We were prescribed medical cannabis with a high concentration of CBD, and low THC. It was very significant in reducing aggression, anxiety, and helped appetite.

Some epileptics claim that cannabis helped reduce seizures. Unfortunately, our son wasn’t showing any improvement in seizures. We did not experience harmful side effects. However, the company that produced the cannabis oil for us changed the method of production. It became clear that it was neither the same substance, nor the same effect on the child. It is very difficult to rely on a drug whose quality changes extremely on occasion. We stopped using cannabis about a few months ago.

Surgical Interventions

We didn’t get there, but another option for epilepsy is surgical intervention of all kinds. From open-head surgery to removing focal points using different methods.

The goal is to allow the patient to live without epilepsy, providing that the type of epilepsy can be positively affected by surgery.

They type of epilepsy our son has was never a candidate to brain surgery. You have to have pinpoint epicenters that can be targeted for removal. But his epilepsy was focal-general.

Some people achieve life without seizures after surgery. Others report that the frequency and nature of seizures got better. However, for others surgery just added scarring to both the scalp and brain tissue, but seizures continued.

Pacemakers – VNS, RNS, DBS

We hadn’t experienced this method in the flesh, but it was designed to be the next stop.

In some cases of drug-resistant epilepsy, you may be offered a pacemaker transplant. A VNS is a device, which is implanted under the skin, above the vagus nerve (on the chest, close to the neck). The RNS and DBS are newer versions that are implanted directly on the brain. The VNS pacemaker is supposed to detect a seizure, and give an electrical signal to the nerve that counteracts the disrupted electrical signal that the brain sends to the body. This doesn’t balance the brain activity, but allows for normal body function despite seizures. The RNS or DBS detect and counteract the activity in the brain.

 

You’ve probably realized there’s a recurring pattern in this article. So even here it is advisable to note that the different types of pacemakers do not work for everyone. In addition it is a pacemaker – a defibrillator and some people complain that they feel the electric blow being given. They are temporary and need to be replaced once every 5 years or so, and reinserted into the body in surgery. It is a relatively simple procedure for the VNS, but invasive non the less.

Recently, information was published about the new DBS pacemaker, which is undergoing the approval processes. The additional potential for life without seizures is very encouraging. We’ll wait to see the success rate. It could very well be worth the invasive procedure.

How we went from drug-resistant epilepsy to life without seizures

At the age of five, our eldest had another grand-mal seizure. He was in kindergarten and fell on his forehead. We took him to the E.R. for fear of brain injury. We felt it was worth asking another doctor how to deal with it. So we went to a different hospital than usual.

The boy was hospitalized. The new neurologist came in for counseling, and explained that he had nothing new to help. Since he hadn’t reached balance on several different medications, the next step will be a pacemaker transplant surgery (VNS). But this surgery is usually only preformed after the age of six. The neurologist also told us he didn’t think that the child would ever reach that age, because of the violence of the seizures.

It’s important to note that today the VNS pacemaker is offered for younger ages, but it’s not a recommended procedure. Also important to note that it doesn’t always help either, but it’s important to know about this option.

Stem Cell Treatment – Cord Blood Transplantation

After we’ve digesting the bad news, we’ve tried to come up with a solution. We came back to the idea of trying stem cells again. We knew about a study being conducted in the U.S., which might help him improve communication. We hoped that if he got his brother’s cord blood unit, he might be able to communicate to us that he wasn’t feeling well. This would make it easier to prepare for a seizure. (Prepare a soft environment to prevent head injury, collect him in advance from kindergarten, etc.).

We’ve already been on hold for this research in the U.S. for about a year. The waiting lists just to get an appointment were very long. We sent emails to try to find out how long it would take us to get an appointment. Other parents, told us when they finally received an appointment, it was many months later.

The clock was ticking and we started taking the initiative. We needed to see if there were any other places doing the cord blood experiment.

Clinical trial requirements

Unfortunately, most studies refuse to accept autistic patients with additional conditions including epilepsy. This is because as a study, the researcher needs to “cleanse” the research from factors that may explain the improvement in the patient’s condition. The participants should only have the factor being treated in the trial.

Pictured below: our other son taking part in a cord blood experiment in Israel. The syringe is covered, as it’s a double blind trial. It is either a placebo or cord blood unit. He will receive his cord blood in a second administration, if it was the placebo. The second administration is six months after the first.

 

Stem cells from other sources

And we did find a few similar studies. But we weren’t accepted into any of them. Either they don’t implant cord blood from a sibling, or they don’t accept children who have background diseases in addition to autism. Eventually the sibling was also diagnosed with autism. He went into a research trial like that, here in Israel. (pictured above)

Just when we started to despair, we began to receive information that surprised us. We heard about places that provided compassion treatments. Places where you don’t have to sign up for research with a long wait. You pay in private to get stem cell treatment. You don’t even have to provide a dose of cord blood. This renewed our hope. Despite finding out the sibling’s cord blood wasn’t going to be used. Despite many research trials rejecting him. And in any case the size of the unit was starting to become irrelevant. You need a minimum amount of stem cells in the unit relative to the child’s weight.

Looking for private institutes that provide the experimental treatment

We started looking into the types of treatments possible in the private service, and where they could be obtained.

It wasn’t easy for us to locate a familiar place with recommendations that would take us. We already created a medical file for him in English, and sent it to hundreds of clinical trials. Most places rejected us. We sent a lot of e-mails. We spoke on the phone with the other side of the world, even in the middle of the night. In the end, we found two clinics that agreed to treat the child. A clinic in Panama and another in Russia.

We chose the closer Russian clinic, after receiving a recommendation. The idea of 15 hours of flight, not including layovers, with an autistic five year old, that functions like a one and a half year old, didn’t have much appeal, when compared to a 5 hour flight. The treatment fees were also much better in Russia.

And our life turned downside up

We did the treatment in March 2019, and our life turned upside down, but in a good way. Downside up!

We weren’t sure what to expect. Surprisingly, the treatment made the seizures go away completely. His EEG was clear for the first time in his life! He achieved life without epileptic seizures within two weeks of the first treatment.

Within a month, it was clear he was improving in communication and development. He wasn’t suddenly neurotypical, but the improvement was fantastic.

Upon receiving our results, Swiss Medica opened an experimental treatment protocol for epilepsy as a primary condition. We now know of three more clinics with an epilepsy protocol.

Transplantation of stem cells from a foreign donor: perinatal tissues

We chose a stem cell transplant from a foreign source, to be administered IV. You can see and read about our experience in the article: stem cells transplant in Russia.

There are many benefits to transplanting stem cells from perinatal tissues, such as placenta or umbilical cord, compared to other sources:

  1. Perinatal tissues do not carry genetic markers. They can be implanted without fear of rejection.
  2. They are young tissues. Perinatal tissues contain a very high concentration of living stem cells. This means that the laboratory can produce quality live stem cells consistently.
  3. The patient does not need to undergo invasive procedures to produce stem cell tissues for processing. This includes taking hormones in advance to encourage increased production of stem cells, anesthesia, and surgical procedures.
  4. Pre-prepration of tissues from a donor allows the patient to receive the stem cells expanded and processed. The patient can come for treatment and receive it within a day.

What are stem cells

In your body there are stem cells all the time. These diminish in amount over the years. That’s one of the reasons for aging. Stem cells are responsible for tissue regeneration. For example, they may replace a dead cell with a new one. Most stem cells in an adult are produced in the femur. There are found in different concentrations in other body tissues. These can also be used to produce stem cells for medical use.

In the process, tissues are harvested from the patient or donor. Fat (adipose) can be extracted by liposuction. Bone marrow can be surgically extracted from the patient’s own femur. Perinatal tissues like placenta or umbilical cord are collected from a healthy birth. These will be collected in a sterile manner, immediately after birth.

The clinics will process the tissues and expand the stem cells. They will prepare them for transplant and administer them to the patient. Administration depends on the condition being treated and the choice of the patient. 

What happens after the transplant

The patient receives a high amount of stem cells in transfusion. For a few months after treatment, the body is equipped with stem cell reinforcements, which can turn into a certain variety of new cells. These set up in certain areas, and our bodies give them a role. They can help the immune system, produce new tissue where there was an injury, and more. This type of treatment is called regenerative medicine. This was a very abstract explanation for a very complex biological process, which is still under research these days. There are thousands of research articles on stem cell treatments available online. We will be reviewing some in this blog at a later date.

Stem cells for neurological diseases

Stem cells should reach the brain in bulk after the transplant. We want them to set up in damaged areas and perform regeneration. They’re supposed to replace missing or damaged brain cells with new ones.

For some conditions, the ability of stem cells to rehabilitate other systems is very important. It might treat gut issues or the hormonal system. It’s all very hypothetical, but there’s a clear positive effect on the brain. It may improve the immune system, which fights inflammatory processes in the brain, which are linked to certain conditions and diseases.

Science on Regenerative Medicine for Epilepsy

 

Unfortunately, stem cells have not yet been studied in depth in epilepsy. There are individual papers focusing on research on the effect of stem cells on epilepsy. We know from other neurological conditions that the therapeutic potential is great. The massive amount of stem cell research shows that the risks from this treatment is low. These days, additional research institutes around the world are starting to produce studies on the subject. Following cases like ours, in a few years there will be better statistics on the subject.

In fact, any epilepsy patients we refer for treatment at these clinics will receive the treatment as part of a research program and contribute to research for effective epilepsy treatment. However, at least at the moment this treatment is not conducted in clinical trials. That means is readily available in private settings, which is very expensive.

At the moment, the institutes that provide such treatments do so within compassion treatments or as a paid experimental treatment, with the goal of trying to see if there are results, and to open up research. Because there aren’t a lot of research articles available about stem cell treatments specifically on epilepsy, when we went to treat autism and developmental delay, we had no idea it would give us to life without seizures.

Stem cell science in Israel

Some conditions are approved for stem cell treatment in Israel. In fact, perinatal stem cells transplants are already in use in the country. Unfortunately, stem cell transplants are not yet approved for epilepsy in Israel. Stem cells are used in a research framework. For example, the Israeli company Pluristem is producing placenta MSC stem cells to treat COVID19 patients. Before the current crisis, they were focusing on stem cell research for Parkinson’s and Multiple Sclerosis.

Sheba Medical Center is conducting research to treat autistics and CP patients with cord blood transplantation. Although cord blood is not processed for stem cell production, it usually contains a large amount of CD34+ stem cells. These could be enough to treat children depending on the size of the unit. The study is not relevant for non-israelis, but there are similar studies abroad. If you have a cord blood unit of the child (not from a sibling or donor) stored in an Israeli blood bank, and if the child has autism or CP without additional background conditions or related genetic findings, contact the research assistant at Sheba, directly to this email:

Cb.study@sheba.health.gov.il

Life without seizures after the stem cell transplant

Luck played to our advantage, and our son today is asymptomatic. The stem cell clinics don’t promise this will happen every time. They only promise that no ill effect will occur. The treatment is safe, based on a lot of data. But there’s no statistics yet for seizure reduction.

Our son also made astounding progression in general development. This was a treatment for autism symptoms. Some of our friends went for the next treatment round with us, with autistic children. They also report progress despite not having seizures. 

Life without seizures, and without medication, allowed our son to leap forward in communication skills. Other small benefits include no more periodic blood tests. He can get vaccinated routinely. We are free of the harsh and tedious medication routine, since August 2019. And there are hundreds of other little things that we have been spared from as parents. For example, we can go to public events, without fear that flashing lights will cause a seizure.

Our experience in Russia was very good, so we recommend first the company where we were treated.

Admission to treatment or research for epilepsy

In order to be admitted for treatment, you must meet the institute’s criteria. While some institute may accept you for their research, others might reject you. If you are rejected, it does not necessarily mean that the treatment will not work for you. It may be because you do not meet the specific criteria of this particular institute. Since these are experimental treatments and research trials, each institute is entitled to set criteria according to its wishes. They preset what is appropriate for the research it conducts. It must be in accordance with the laws in the country in which it is conducted. A a result, therapeutic protocol may also vary from clinic to clinic.

Our goal is to help whoever might benefit from this treatment, to find a suitable clinic. We provide information about clinics we checked out. When necessary, we help with medical document collection and submission. We also provide Hebrew to English medical translation services.

Research centers that accept a patient, will send the patient the details of the treatment. Patients can consult with local healthcare professionals on the treatment. Then decide on whether or not to enter the study.

If the patient wants to participate the study, he will sign up and request an appointment from the institute he chose.

Our focus as parents of autistic and epileptic children is on those two conditions. However, stem cells may help other conditions as well.

Other conditions that are treated at the institutes we work with:

  1. Gastrointestinal: Crohn’s disease, liver disease, stomach or bowel ulcers
  2. Endocrinology: diabetes, obesity, hypogonadism.
  3. Eyes: Macular necrosis, a variety of vision and eye problems
  4. Heart: High blood pressure, rehabilitation after infarcts.
  5. Neurological diseases and disabilities: Alzheimer’s, autism, ataxia, CP, chronic fatigue, dementia, diffuse axonal injury, encephalitis, seizures, muscle inflammation, fibromyalgia, Lyme disease, meningitis, monomial amyotrophy, multiple system sclerosis, neuropathy, Parkinson’s disease, pick disease, rehabilitation after stroke, tinnitus
  6. Lung: Asthma, COPD, pulmonary fibrosis
  7. Rheumatoid problems: arthritis, dermatomycotic, lupus

*We can not testify that these treatments work. We haven’t tried any treatments other than autism and epilepsy. However, we will be happy to connect you with the institutes that do these treatments. You will receive the necessary medical information to decide whether to attempt such treatments. After receiving the necessary information, consult with your doctors before making a final decision.

The services we offer to help you find appropriate care:

Send us a message, and we’ll give you more explanations about the treatment. Free of charge. You will receive contact information from clinics we recommend. We provide enough information so you can file your medical records alone. Let’s just stress again this is not a recommendation to try the treatment. And we will also emphasize that there is no obligation on our part that the treatment will work for you as it did for us. You will need to digest the information and take responsibility of your decision.

Since this is an experimental treatment, the various institutes do not commit to a particular achievement. With the data currently available, the response of a specific patient cannot yet be expected when it comes to epilepsy. Similar to the classic methods mentioned in the article: some patients will not respond, some will have a partial response, and some, like our son, will experience complete remission from symptoms of the disease.

In addition, if you will need a Hebrew to English translation of the medical file, we will be happy to translate for you the required documents for a convenient fee.

For additional services, we are available:

  1. Administrative services for registration for treatment, including: submitting the medical file to at least three clinics, email communications, etc.
  2. Personal telephone escort. We’ll make sure you’re ready from A-Z for a flight abroad.

Preparing to go to the Institute or research rules

Do not arrive without prior coordination which includes:

  • Date due
  • Inbound and outbound flight details
  • Pre-agreed handling protocol
  • You do not travel without a ready-made payment method.
  • Accommodation arrangements (some institutes include it, and other require that you rent a hotel room alone).

This may sound like obvious advice but we speak from experience. Don’t arrive at a clinic unannounced! You won’t be accepted. They have to make preparations in advance. Including the pre-preperation of stem cells for transplant. We’ve had clients hop on a flight without scheduling the arrival. We had to work very hard to make sure they are accepted for treatment. The treatment was provided, delayed by a week.

It’s a good idea to understand exactly what you’re getting into. Get a breakdown of the agenda and what’s expected of you before committing.

Find out in advance how you are expected to track and report on the patient’s progress. Admission to a research program requires the candidates to follow specific instructions.

Choose a clinic that is well known, legal and comes recommendations. Even with recommendations, research where you are going. Look out for signs of malpractice.

To summarize – last reservation

Before you press the button below, we want to emphasize: this is an experimental treatment. We have no idea how long our child will continue to enjoy life without seizures. There is no guarantee you’ll have any change from the treatment. We are sharing our story, so others will learn about other possibilities for neurological recovery.

In this article and others on the site, we attest to our personal success, and cannot take credit for the full or partial success of others from the treatment. We’re not medical representatives. It should not be considered a medical recommendation to perform the treatment.

If you would like, despite all these reservations, to receive our recommendations. If you want to get help from us to find to such treatment, click below.

 

Schedule a consultation now

Contact us to get information about the experimental treatment that helped us care for our child and gave him life without seizures Contact us
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Advocating for your children during medical treatment

Just say no! I’m not willing for unnecessary tests to be preformed on my child. I’m unwilling that every medical student will touch him. There’s a limit to how many time he can be pricked repeatedly without comfort or pain relief. Sometimes advocating for your children during medical treatment is necessary. The medical staff at the E.R. often forgets that just a moment ago another staff member examined him. They forget they have a child in front of them, and not just a medical problem that needs to be solved.

I stood over the body of my two-week-old baby, and looked the doctor in the eye. Just don’t. We’re done for now!

It’s not easy being a parent of a child with special needs. It’s even less easy to parent four children, when three of them have special needs.

I am not suggesting to attack medical staff. The goal of this post is to explain to parents, how to work with medical staff, and when medical actions should be stopped, to allow your children to cope with painful or unpleasant processes, to prevent trauma, and to increase cooperation. I hope that this will help parents detect when advocating for your children will get them better treatment.

Advocating for your children during medical treatment

Quite a few times, I find myself stopping my colleagues from the medical staff, from performing actions which are necessary, but are also too difficult to bear for my children. This time it really stood out.

In addition to the fact that we just had a baby, and that the pregnancy and childbirth didn’t go smoothly, this time we ran into more unexpected medical problems that required quite a few invasive tests for our tiny baby.

It is difficult to take blood from a baby, but the strain on the health system means, among other things, that a pre-Corona-used baby test tube, which costs about double the cost of a regular test tube, is not currently in stock. That led to many tests that were disqualified. The poor baby had to give blood again and again several times, to extract the required amount. Exhausted crews and faces masks also make it difficult for staff to physically see the tiny hand and stab the right spot. Every blood test turned into a terrible nightmare. Each time I was offered to leave the room, and each time I refused. When my kid suffers, he needs his mother.

During the hospitalization, one of the interns was required to take an additional EKG test. . After failing to do so several times, I stopped him and said, “enough!” “I refuse to take the test any further!” “He’s going to need a heart-echo test anyway, so why torture the baby?” “And the same test was already taken in the E.R.” As a medical team sometimes we’re torn from both directions. On the one hand, you understand the staff and want to let them do their job, but on the other hand, advocating for your children during treatment may feel like you are getting in the way, but it is necessary for the physical and emotional safety of your non-verbal child.

Cluster medical procedures

I explained to that same intern that it is customary to cluster procedures. If we need, for example, to give medications to a baby, we will schedule the bathing and diaper change for that time.

That day, the same intern entered the room at least five times, woke, moved and examined the baby and disturbed him. When it was time for the EKG test, The baby was no longer able to bear the disturbance.

Medical staff treatment

So little time is devoted to educating medical staff about addressing special needs populations, and patient care etiquette in general. In fact, in all my years of study as a nurse, I can count on both hands the number of hours devoted to it. The staff, which is stressed out as it is, is busy trying to work efficiently. Sometimes they need to be stopped and told how treatment should be provided to our children. I often find myself angry about the subject, even when I’m wearing a uniform. But in an era, when our minds are on the computer, and efficiency is above all else, sometimes you have to remind them: “Hey, remember I need you to explain to me,” “I demand you don’t do things without my consent,” “Remember to ask first, and see if I agree too!” And you really have to remember, when you take care of another, whose body is his. Our kids often don’t know how make these demands, and need us to make them instead. Your children often need to be represented during treatment.

For the first time in my life, I stood scared in front of a doctor, and asked for an explanation of why they wanted to perform certain actions on my baby. When it comes to your child, sometimes you’re just his parent. Our education, and logic are no longer with us, and we are on a single mission: to protect our child and make sure he just lives. That he keeps breathing a little longer. In defense of the doctor who was standing in front of me, she explained quite patiently. I haven’t been comforted by the protocols (which I’ve been reciting in my sleep for years), and the fact that I know the answer by heart, even if I was awoken after a battle, in which I hadn’t slept in in a month, when it came to my private child – I just didn’t want to. I stood in the room and tried to cooperate in tears.

Quite a few times, we, the medical and nursing staff, wear uniforms and our faces change. We have a desire to reach everyone, without mistakes, cover ourselves legally and document everything. We are required to meet administrative tasks, and anticipate problems. The staffs are overloaded, and instead of a nurse treating a few patients, sometimes it’s one nurse for up to 20 patients. The load is enormous. It’s not the staff’s fault. When a doctor is split on both patients from the E.R. and on the ward at night, it’s only a matter of time before something happens. This is not an excuse of course, but it is part of the explanation for inadequate caregiver manners.

Take care of your child first, but remember to be polite.

Firmly but graciously. Explain that you appreciate the staff’s work, but that’s your limit. For example, inserting an IV line: If a staff member twice tried to insert an IV line and failed, demand a break to comfort the child. It’s reasonable and acceptable. Say, we’ll try a in few more minutes again.

Help the team as best you can

Try to help the teams run the tests. This will make it easier for you and the child. If you need to hold the child and calm him down, do it.

Be aware that a parent’s presence makes it difficult for emotional staff to function

It’s really not your problem, but be aware: if it’s a examination, which is already stressful and difficult to do, medical teams are human beings too. Make it easy for them if possible and say it out loud, too. “I know this is a problematic test. Let’s get through it together.” When the staff feels trusted, their performance improves.

Require pain relief when necessary

No man should suffer pain when it is not necessary. Ask to apply an anesthetic ointment to the skin before blood tests, or painkillers before a painful test, and even sedation when necessary. These are acceptable requests.

Demand an explanation of medical procedures and come prepared for preknown procedures

If you are not in an emergency situation, ask to be explained (if possible): why, what, and in what form the procedures are done. If you think they are unnecessary, politely ask for an explanation of their necessity. It is your full right and duty of staff to provide it.

Keep in mind that during an emergency, the crew’s ability to explain what’s going on is limited. Sometimes they’ll send you to get an explanation separately from the child.

Explain the need to detail the course of action in order to prepare your child and yourself for cooperation.

Know your own emotional and physical limits.

If you pass out at the sight of blood, don’t be in the room when they draw your child’s blood.

If you are unwilling to let them draw blood, without an anesthetic ointment, and this is not a life-or-death event, stand up for your right. Try to come prepared with such ointment, for places that might not carry it.

Give some thought to what you’re willing or unwilling to do to your children in the situation you’re in, and explain it clearly but politely to the staff.

I feel it is important to note that all the medical staffs I faced were professional, and tried very hard to be pleasant. It just doesn’t always happen. In addition, when there is a rolling event, when you are in a situation where one medical event gets complicated or is followed by another, parents like us sometimes meet the staff too tired and nervous to be nice or polite. It’s not fair twice. Once for the new staff members, who are not to blame. A second time for us, we don’t deserve to deal with such a big load and with improper supports.

We have to try to gather emotional resources, or at the very least, explain to the medical staff that we feel one way or another. “We know it’s not their fault, but… (Fill in the blanks of your emotions and needs).”

Preparing in advance for non-emergency care

This story came from our preoccupation with the baby’s health this week, which required immediate attention. But as experienced parents, we have visited doctors and the E.R. quite a few times along the years. We learned that it’s important to prepare the children for a doctor’s visit, for them to cooperate and be more relaxed. One of the tools we use heavily, to prepare them for this, is the social story.

In conclusion

When we communicate pleasantly and effectively, we increase the chances of being heard. As a medical professional and mother of special children, many times I function in both roles. It is my duty to remember the needs of both parties, and to meet the tasks of both parties. I hope that in time, the medical staffs will learn more about the fascinating world of caring for children with special needs and be able to offer them good, tailored medicine. It is advisable to arrive as prepared as possible, both in terms of knowledge and emotionally, when visiting a clinic or hospital. Know your rights.

Let the medical teams do their job, but be alert to situations when advocating for your children during medical treatment is necessary.

We hope that because of the early detection of the epilepsy, it will reach balance quickly and he will grow to be healthy. But we are also preparing for the option of stem cell therapy when he reaches the minimum age of three.

Good health to all.

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Does My Child Have Autism

One of the most common questions we are asked is: how did you know your boys were autistic? Perhaps you have noticed something unusual in your kid’s behavior and you are asking yourselves “does my child has autism?”, or perhaps, like Hagai, you searched online in search of an answer to why your child behaves in a certain way. In this post is a detailed guide for what to do, and some tools to help you get organized and prepare for a diagnosis, in Israel. Most of the tips will be relevant world wide.

Occasionally, someone we know tells us about their kid’s abnormal behavior, and asks us if their child has autism. We see this question repeated in forums, and when parents turn to us for guidance. Because we are parents of diagnosed children, we are perceived as having the ability to diagnose. We cannot not diagnose children, and even if we could, it is impossible to diagnosis a child based on the reporting of a few individual behaviors. So what can be done? How do you know if you need to take a child for a diagnosis? Here are the guidelines:

** This post is written with Israeli institutions and protocols in mind. some of the links will lead to Hebrew articles, which posts will be translated with time **

How to start when you think your child might have autism

The first rule, is if you have any doubts, follow that feeling and find out. The process starts at home. If you get a strong feeling that there is something off, open an observation routine.

Record down any behavior you feel is abnormal

Initial observations before asking professionals for an autism diagnosis

1. Get yourself a developmental milestone checklist, sorted by age, such as this CDC list.

2. Get yourself a notebook or a notes app for your phone.

3. Sit in front of your child as he is playing with himself and with others.

4. Write down any behaviors that seemed off to you. Take videos if you can. Observe overtime, at least two weeks.

5. Compare your observations and the milestone list. Is your child missing any milestones? Is the gap between your observations and the age group significant?

Approaching your pediatrician for HMO diagnosis

If your observations led you to believe there is a problem, approach your regular pediatrician, and share your findings. If your pediatrician is not attentive, it’s okay to get a second opinion.

The HMO’s in Israel diagnose children up to the age of 6, with the pediatrician’s referral. They are also committed to help you find out who can help you get the diagnosis, even if they won’t be the ones handling it.

If your child is five years old, don’t delay. Start the process now. It’s much harder to get it done later.

Private diagnosis

If your child has passed the age of 6, or if the HMO doesn’t have close dates for diagnosis, and you want to get quick answers, you will need to approach a private institute. It’s best to ask around Facebook autism forums to get a good recommendation.

Some institutes work with the HMO, or with private health insurance companies. Private diagnosis might be expensive, so it’s important to find out in advance what your options are.

What to expect at the beginning of the process

The process of getting to the diagnosis, may take a long time. With younger children it could be longer, about 6 months, give or take.

Additional factors that extend the time to diagnosis: You will be asked to rule out several physiological factors that might cause delays. For example, if your child does not turn his head when you call his name, you will need to rule out a hearing problem. You may need a eye examination, an EEG to rule out epilepsy, a brain MRI to rule out a space occupying mass.

Depending on your HMO, the lines may be long and far away. In the meantime, you might be offered non-medical treatments such as speech therapy or occupational therapy. The hope is to minimize the developmental gaps that you observed.

However, it is important not too keep your suspicions bottled up. Try to push for diagnosis as early as possible. It will make it easier to get recognition and treatments. Early treatment has higher value than late.

What does the autism diagnosis look like

At the diagnostic institute, whether through the HMO or a private institute, you will usually be handled by a number of professionals. At the very least, by a developmental psychologist, and a developmental physician or neurologist. You may also meet a speech therapist, physiotherapist, and occupational therapist. In most of the sessions, the child will be asked to play freely or perform tasks according to a structured test. In some sessions you will meet the staff members without your child, to give your report. In addition, you will need to provide a behavioral report from the educational framework (ask the institute to give you a form, to be filled out by the kindergarten teacher / caregiver).

The Diagnosis needs to follow a standard called DSM5 , in order to be considered valid in Israel (and other countries), and in order to get your child recognized by Israel, so he can get his rights.

After your child meets all the necessary professionals, you will get an appointment, to receive the results of the diagnosis.

It is important to note that many other developmental problems may arise in the diagnostic process. You may have thought it was one type of problem, but it could be a different diagnosis. You may also leave without a diagnosis, but with a request to arrive at an older age for reassessment.

How does he/she plays could be a clue

Diagnosis summary

After completing all the meetings at the diagnostic institute, you will receive a summons without the child. In this session you will receive the final diagnosis in writing and orally. At best, with an in-depth explanation of what is written, and what to do next. Asking someone, does my child have autism, is is a very emotionally difficult question. This is a very hard day, even for those who understand in advance what to expect, and even if it is not what you thought you would hear. Ask to return to them after a week or two so that they can explain the diagnosis again. You should also read our post about rereading the diagnosis after some time.

How to handle diagnosis day

Take the day off

The diagnosis meeting only takes about an hour, but clear your schedule for the day. If you are given better news than you expected, you can change your plans, and go about your business. If you receive harsh news, you will need time to digest. Even if you are told what you thought you will hear, it is still very hard to digest. (Read Shira’s or Hagai’s story from the experience)

Take extra copies

Make sure that the diagnosis is written up properly, and that there is coordination between all the different parts that the staff wrote together. When the child is high function, sometimes one staff member will call him confusing, while the other will say it’s very clear. Eventually they have to come to a conclusion together, make sure they wrote the conclusion in a clear manner.

On the day of my third child’s diagnosis, I asked the neurologist, does my child have autism. She was very clear that there is no confusion, but the psychologist said she was not so sure. The psychologist conceded to write him up as autistic, but she withheld a written diagnosis, and we had to pressure the institute to pressure her to hand over the corrected document.

Don’t leave documents behind

Before you leave the place, make sure you have everything. At the least, a report from the developmental doctor or neurologist, and a report from the psychologist. Without these you will not be able to submit documents, to receive the rights of the child. Leave with an additional copy of the documents.(Read our post on what to do after the diagnosis)

Schedule follow ups

Come out with a referral to get parent counseling, right from the diagnosis. Make an appointment with the HMO social worker to find out your child’s rights. Make sure they explain to you what the recommendations are for your child. If my child does have autism, I need to know what I should do to help him.

Understanding the diagnosis

If you still feel that they have not properly explained what is written in the diagnosis, or its meaning for you and the child, ask to institute see the diagnoses again, about a week or two later, to get the explanation again.

Alternatively, private parental guidance can be arranged outside of the diagnosing institute, which will help you put things in order, digest, and plan the next steps. Take a look at the services we offer, to help you decide what will help you.

Why should I even ask myself if my child has autism

The day of diagnosis is an unpleasant event, but important on the path for treatment for your children. Remember that even if your children have an official diagnosis, they will still remain the same children. Your children are the same before and after you received a piece of paper, but now you will have more tools to understand and help them. The diagnosis can help you understand what motivates them to behave in a certain way. It helps you understand how your child can be helped to overcome certain difficulties, such as a sensory regulation problem. The diagnosis allows you to receive rights from the state, such as a pension, a tax deduction and more. The diagnosis gives you rights from your HMO and/or private health insurance (for this purpose, you should purchase comprehensive and extended medical insurance before starting the process).

It is recommended to go for diagnosis as early as possible, to be able to help your child more effectively.

On the other side of the coin, if we ignore our gut feeling, or what others around us are pointing at, we will be abusing our children. If I don’t ask myself does my child have autism, I also choose to ignore his needs. This will leave both of us frustrated. I will be denying my children the best resources without answering that question. At the very least, if the child is neurotypical, the doubts that were eating me up from the inside can never be answered by a simple observation and comparison to the benchmark list.

I wish you you an easy process and good results,

Shira

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Teaching independence with visual navigation cards

In this post we will talk about how to teach independence with visual navigation cards to help children and adults learn routine actions. We will discuss How to design and prepare a visual navigation card, and how children are taught to use it.

How to use visual navigation cards to teach independence

Teaching children everyday activities, household chores for example, is not always simple. Kids want to do things their own way. A neurotypical child, looks at the modal people around him (parents, kindergarten teacher, siblings, kindergarten friends, etc.), and tries to do the same. Sometimes they miss important steps in action, because learning from imitation isn’t always enough for a more complex action. In children with communication problems, it is sometimes more difficult to teach complex action, because they do not perform imitation properly, and sometimes a verbal explanation does not “speak their language”. In the children with ADHD, sometimes you don’t succeed in “simple” actions because they don’t remember to perform Action A before B, and B before C, and when they start a process from the middle, it frustrates them because the action they wanted or had to do doesn’t materialize.

We’ll take an example, a simple process like going to the bathroom. Supposedly a very simple process, but it actually consists of a lot of steps. You have to open the light, open the door, go in, close the door behind you, take off your pants, take off your underwear, sit down, ‘go’, wipe until clean, lift your underwear, pick up your pants, flush, wash your hands (wash, pump soap, lather, wash), open the door, step out, close a light, close a door. How to wipe, how to wash your hands. It seemed simple to us, because we forget how hard it was for us to learn all the actions in the right order when we were little. Visual navigation cards can be used teach any routine process from going to the toilet to folding laundry.

Break down complex operations into parts

If we see that a child has a constant difficulty in learning a repetitive action, it is worth examining where the problem is rooted, and try to simplify it. Sometimes you only have to focus on one element of the complex action, such how to wipe your buttocks. Sometimes you have to change the method of teaching to “speak a language” that the child understands.

One of the methods I studied teaching in Israel, in a learning disabilities diagnostic course was called “visual navigation cards”. It’s basically the same complex breakdown of action I described above, into small steps, depending on the child’s need, and presenting them to the child through images. In the image below is the visual navigation card for the toilet routine that is hung in our house.

You can see in the example that every action is displayed visually. We numbered the actions, so will be easier to track correctly. We saw that as a result of the change, our child improved, but we added more actions that were missing to a new version (close the door after entering, put on soap, and wash). You might need to break it down further, or take out steps to simplify learning.

A method that is also suitable for older people

I recently had a conversation on Facebook, with an adult autistic person, who lived in a hostel. He complained that his instructor was repeatedly saying, “I don’t understand how you can’t operate a dishwasher. It’s such a simple action.” And that he’s just standing in front of the dishwasher with no idea what to do with it. I suggested that the guy, to ask the instructor, to take a picture of every step of the dishwasher activation process and hang the visual navigation card next to the device. If we say to someone over and over “how can you fail to do such a simple action” probably for him it’s not simple, regardless of age.

Visual navigation cards are suitable for anyone with difficulty executing a process. From children to the elderly with dementia, or even office workers, who have difficulty running the coffee machine.

Think IKEA furniture. Do you know how to build a new chair without looking at the instruction manuals? Do the instruction manuals “speak” to you, and is it easy for you to complete the process? Or maybe the instruction manuals don’t speak to you, and you’ll always ask someone else to help with the construction? Most people can’t build new furniture without the guidelines. Most people use the “navigation card” (the visual guidelines page) that comes with the furniture, and manage to assemble them. Whoever needs help assembling is because the visual guidelines don’t speak their own language.

How to teach independence children with ADHD

As I mentioned, the method was originally developed for ADHD students. For example, parents of such students might hear from the teacher over and over again: “It’s hard for him to get ready for class.” That’s a “simple” routine action, and a lot of students have a hard time with it. If the student reads well, the card does not have to be visual, but it makes it easier for students with dyslexia for example even at a later stage. Break down the process into steps: (Sit down. Put anything you don’t need on the table for the next lesson in your backpack. Take out the books, notebooks and equipment required for the next lessons until a break.) This is probably enough steps, but if the teacher indicates that it hangs between certain stages, you produce a more detailed navigation card.

Other examples for students: homework, math concepts, accessing online tasks, verbal problems.

How to make visual navigation cards

1. Identify a routine action that is difficult. (toilets, dressing, household chores, heating food in the microwave, etc.). Try to figure out at what point the child gets stuck.

2. Break apart the process into as many steps parts as you think are necessary.

3. You can use AAC device to find Images, such as in the example we displayed. You can photograph the process step by step, such as in the example I gave on the operation of the dishwasher.

4. Write the action next to each image, so you and the learner will use the same language.

5. Print the pictures, and arrange them conveniently: in a table, a single row, or column.

6. Optional: It is recommended to laminate the card, depending on where you place them.

7. Hang the card where the action often occurs. For example, on the wall in the bathroom, on the kitchen wall next to the dishwasher, or on a binder that is always in the student’s bag.

If there is no problem reading the navigation card can be step by step sentences. (such as the 7 steps for how to create visual navigation cards).

How to teach visual navigation card usage

Now it’s relatively simple. When the kid does the action, you remind them to look at the card, and make sure they haven’t missed any steps. My eldest still picks up his pants in the toilet before we wipes, and then he’s bummed out that he’s getting his pants soiled. So we hung up the card, and every time I see him pooping, I remind him that he has the card next to him. He looks, makes sure he hasn’t forgotten steps, and the process is more pleasant and successful for him. The images themselves were created with the AAC app, are beautifully laminated. The visual navigation card is like a map. Each image is the coordinates for successful navigation through the multi-step process.

You can read about our use of navigation cards and also teach your child how to dress in independence.

Visual navigation cards can also be found on the website store in the Navigation Cards category.

If you would like us to create similar tabs for you that are not listed there, please contact us.

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Will the baby have autism?

For this post I feel that and introduction is needed – there are no parents in the whole world who do not feel concerns during pregnancy for the future of the baby. Whether they’re concrete or not. When there’s already a special needs child in the family, that fear is taking on a shape, a name and a life of its own, no matter what we do. It’s legitimate and even important to recognize it to put things into proportions. Those of you who have trouble reading this post can simply skip it. In this post we will try to answer the concerns raised about whether the baby will have autism (or any other problem or difference).

Will the baby have autism and what are the consequences

A lot of people don’t understand the consequences of diagnosing a child in the family with autism. One of those is on the decision of having more children.

There’s a lot we don’t know about autism, much more than we do. One of the issues that are unclear, is why there are many families with more than one child diagnosed on the spectrum.

The meaning of genetic testing

The journey through the world of genetics doesn’t always give clear answers. You could end up with a clear answer, an unclear genetic finding, or no answer at all. In fact, every few years, more knowledge is added to these tests and they get updated nonstop, so sometimes you might try to do them again. Will the baby have autism because of a genetic factor? The results from the genetic tests have several options:

1. Clear genetics finding: For example, the Fragile X – a syndrome that also includes autism symptoms. If there is a definite genetic factor, you may choose the process of embryo selection, to avoid a baby with the same known problem.

2. A known, but unclear, genetic finding: for example, a duplication/deletion/mutation in a gene, without a lot of data to build on. Your geneticist will let you know what you should do, but the answer may be that there is no answer.

3. No finding has been found: like the previous option. If no known genetic information was found, this does not mean that there is no genetic problem, but that genetic science does not know a gene responsible for the problem. It’s important to note that genetic testings are constantly changing, there may be a clear genetic answer in a decade even though it hasn’t come up now.

In any case, bringing in another child involves risk, according to statistics, even if no clear genetic finding is found.

Additional Risk Factors

Besides the genetic factor, there are environmental risk factors for the physical or neurological health of the baby. There are factors that increase the risk of normal development of the fetus or during infancy that can lead to autism. Environmental factors that increase autism risk:

  1. Smoking during pregnancy
  2. Illness during pregnancy. For example, Rubella increases the risk by about 7%.
  3. Father’s Age
  4. Premature birth and it’s complications.
  5. A particularly difficult birth or complications during the early days of the newborn.
  6. There are other risk factors suspected and being examined.

Do you take the risk and have more children

At some point in our lives we won’t be able to make children. Because of the rising age of parenting, along with the fact that sometimes it takes time to get a diagnosis, most of us actually have make a choice: gamble and get pregnant knowing that we can have another child with autism, or give up a natural pregnancy and go another way, like fostering or adoption, or alternatively decide there won’t be any more children.

In a lot of cases, parents have another child because they know their special needs child will live after them, and someone will have to look after that child at least at the take-home level for the holidays, make sure no one harms him etc.

In this case, parents will actually be able to choose: if they know of clear genetics – PGD (preimplantation genetic diagnosis), or a natural pregnancy with an amniotic fluid test or a placental chorion test and abortion if the genetics was found in the test, or simply get pregnant and give birth. Whatever comes will be received with love and happiness.

It’s a complex decision, and even more complex, when it comes to an eldest child who has no siblings. In fact, parents have to decide whether they will be willing to deal with two or more children with autism, and all of it’s complexities. Or the other hand, accept that they will have no more children, and that that child will have no siblings, or that the neurotypical child will have no siblings like him, who will help him bare the responsibilities that usually come with the special needs sibling.

Our Personal Choice

We’ve been to this place, too, and had to choose several times.

The first choice was after receiving the diagnosis of our eldest son. I was already pregnant with a boy, our third child (between them, we also have a neurotypical daughter, special in her own way). In Israel, an abortion can be performed up to the 24th week of pregnancy, even if there is no established suspicion from genetic testing, due to a sibling with autism. The next day, following our eldest son’s diagnosis, I was called by his pediatrician. He told me very clearly : “If you want, because you’re likely to have a baby with autism again, you can go get an abortion. Just say, and I’ll write you a letter.”

Don’t get me wrong, the doctor was actually okay. Very blunt, but okay. These things have to be said that way. Directly, so no one can misinterpret anything. The risk, according to statistics starts at around 20%>, even if there is no clear genetic finding.

My first decision – refusing abortion

I refused. I told him we’d be ready for what was coming. Our eldest didn’t function at all at the time. He was like a one-year-old baby. I didn’t know if the baby will have autism, but I decided that abortion wasn’t on the table for me. I’m not saying it’s wrong to have an abortion. No woman should have a baby if she doesn’t want to, for whatever reason. I just didn’t want to do it.

And we really had a cute little baby. But at six-months-old, I noticed that he wasn’t turning to look at me, when I called his name, and I rushed into our child development center. They tried to reassure me that I was being hysterical, because just under a year ago, my eldest was diagnosed with ASD. At that point, I demanded that he be monitored. And indeed a few months later, a hearing problem was discovered. This led to endless complications and communication attempts at the speech therapist.

Two years later, with a child who still has a language and communication problems, we asked for a diagnosis. It took almost six months to get a date. And finally, he was diagnosed – high function autism.

When the neurological told us he was on the spectrum I was relieved. For years, they looked at me and claimed I was crazy and hysterical. At least my sanity has been restored to competence. I’m not crazy.

Second decision – whether to have another child who may have autism

Currently the headcount is like this: two kids with autism, and one without. The Eldest also had epilepsy. Nope, I’m not a young girl anymore. Should we try for another one?

For six months we were on the fence, thinking about what to do. What if the baby will also have autism or epilepsy? In the end, we decided, whatever comes will come. We’ll prepare in advance, and we’ll do whatever it entails.

We had meetings with all the medical teams that accompanied us over the years. From the geneticist to the neurologist, the child development professionals, and our private occupational therapist, that’s been accompanying us for the last few years. Together we tried to build a plan for this hypothetical baby.

Preparing for pregnancy

What’s the best way to get it done: Natural pregnancy or PGD (an IVF process, with the selection of embryos). Couples who have clear genetics that cause autism, can choose to do a PGD. It should be taken into account that the process of examining the embryos, can be harmful to them. PGD can cause developmental problems in itself. What is the exact risk factor is not clear, but there are such children.

How to monitor the pregnancy (lots of ultrasounds, placental chorion, late brain ultrasound and more).

What to do immediately after birth: preserving cord blood, examining a neurologist immediately after birth, geneticist, Routine monitoring of the child’s development until the age of three, etc.

We came to a decision together: the prospect of another healthy child, who could, together with his sister, accompany his brothers, if they needed help after we pass, was greater than the risk. And so, I did get pregnant with another son, which is supposed to be born after the holidays (November).

Another son!!!

Another son means a higher chance for ASD. This gets us thinking about what will happen again.

Boys have increased risk of rutism

Third decision – giving up abortion again

And again a test at the gynecologist. This time a friend from work, one who saw exactly what I was going through. She asks me again if I want to have an abortion, she promises to do it herself and accompany me hand-in-hand all the way.

Are you sure? She’s asking. Are you sure you want to raise another kid like that?

I tell her that no mother chooses to have a different child, we all get what we’ve created, for better or worse, and with a lot of love.

“It’s going to be different this time,” I tell her, “this time we’ll be vigilant for any signs, you’ve seen his brothers and how they’ve progressed well. He might even be a normal kid, who knows what’s coming.” I comfort the doctor and myself together. She’s also a friend and wants the best for me.

I remember how I ran out of her O.R. once when an ambulance brought my kid to the E.R. The other nurse answered the phone and informed me aloud that he was coming to the E.R. The doctor looked at me while the other nurse rushed to wash up and replace me and told me, “Go! everything’s fine. Another nurse will replace you. It’s a minor surgery and we’ll quickly be done.” By that time she and another nurse went into the O.R., and I ran to the Children’s E.R. to be with him.

Now she looks at me and asks again, “Are you sure? Another one with autism or epilepsy? Will you be able to handle that?”

I look at her and tell her, “I’ll be fine. Don’t worry.”

Accepting our choices

That’s the reality for a lot of parents. We need to prepare for the worst and hope for the best. It’s best to come to terms that things are not as you might have hoped, and do our best even when it’s difficult.

I came home after that meeting, sat in the chair, my little one climbs up on top of me and my huge belly, and hugs me. I smile at him, he’s sweet and heart melting. “How could someone suggest to give up on you?” I wonder, as the fetus kicks him. Pretty soon, this baby is going to have to get used to the fact that he’s going to have to share mom’s hands with everybody. On the other hand, there will also be quite a few hands that will want to share him.

Our boy will soon be born. I am in the last few weeks of pregnancy (thank God). After a complex pregnancy of the kind I’ve been looking forward to be after. I promise him and myself it’ll all work out. We’ll be fine we’ve been through the worst, so it doesn’t matter what comes.

In conclusion

The question – whether the baby will have autism, does not have one correct answer, and there is no good decision in this story. Parents like us are going to have to take a decision, with everything that comes with it. The best way is to prepare to welcome another complex child, prepare a work plan and monitor the development of such a baby, and at the first sign get to work. If you see that at six months old there are signs, don’t wait any longer. Demanded follow-up! At the age of one, demand treatment, and go child development activities. What can be done for them at these ages is significantly greater than what is possible after the age of two. Save Cord blood – it’s not a luxury – it’s a must. Today, kids can have Cord blood therapy, even in Israel (research stage, for some syndromes and illnesses).

And even maybe after all these preparations, the worries and madness that enveloped this pregnancy there’s a good chance (even really, really good) of having a perfectly healthy and Neurotypical child.

Rejoice in your decision – the heart may not always be at peace with it, but there is more than one way to be parents. Enjoy the decision and find its bright spots. If you’ve decided not to have another child, at least you’re also giving up on changing diapers, and waking up at night. Proceed to the next level happily – returning to the adult world without babies is fun too.

In the meantime, Hagai and I will wait for the baby to come. And whatever comes we will enjoy – no matter who he is, what he brings with him, one thing is certain he will bring the same happiness that any his brothers have brought.

Shira

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Forgive ourselves – for healthier parenting

“You are a hysterical mother” That’s what the woman on the other end of the phone told me. Show a vote of hands of mothers in the group
here, who didn’t get this sentence at least once. She was hurt and stunned as we sat down to talk and calm down – mainly on how to forgive ourselves

We deserve to forgive ourselves


When it comes to our kids we’re allowed to be hysterical! We can feel when things aren’t working out. We are allowed to follow up on them with concern. But most importantly, we are allowed to receive help and support, counseling and listening and, for god’s sake, even psychiatric treatment. I told her and explained, that besides to the real concern she feels for the child (whether there the cause is real or imagined) there is someone else, the person who takes care of the child and needs some help herself.


Even if our child is Neurotypical and we’re just hysterical.


On the eve of this Yom Kippur, I want us to first of all be able to forgive ourselves, for not giving ourselves this basic help. That we ignored the difficulty and tucked it in until we couldn’t contain it any more. When we’ve already asked for help, it was only for others. Helping our children begins with helping ourselves first.

Many of us will stand vigilant when our child needs anything, and we will go to war for them, when there’s a real problem. Yet in the same breath, we also drag a trail of immense emotional strain that begins somewhere before our child was born.

Time passes and this stomach that is filled with these feelings accumulates pounds of emotional distress (or in my case literally real pounds – the benefits of emotional eating).

And then something happens that’s hard for us to get up — that’s our crisis point.

picking up the pieces

Crisis point

It happened to me a week after our neurologist said she thought our third son had autism.

At first I actually felt good. “At least you’re not the hysterical mother,” I said to myself, while patting myself on my shoulder. All these years I’ve said something’s wrong, and here’s the truth.

Then I came home to another day, with my boy in an emotional mess from kindergarten.

A few days later, it came.

A sea of tears and pain, that led me to finally report at the psychiatrist’s office and beg for treatment. The accumulated years of stress since the diagnosis of the elder, the multiple resuscitations I had to perform on two boys, the surgeries, all collapsed into from the fragile pulp crying that was me.

And I started getting treatment…

A place for myself

After a month or two and I started to feel better. I even started swimming a little bit again. I bought some makeup and a nice outfit. I started taking care of myself. Not for them. For the first time for me.

The tears stopped, my concentration got a little better, and the future started to look rosy again. Again I saw where they were progressing or not making progress. I had more the energy to do things.

You can let go too

So if you feel it’s hard, that’s your stomach is full and not just from holiday dinners. Know this, we’re allowed to get help and support even from a psychologist. We’re even allowed (God forbid) to get a pill from a psychiatrist, the kind that’s designed to help us relax.

We’re allowed to go on a date with our partners and do something fun, swim in the pool, dance to music or anything else that will make it easier for our souls.

It’s okay to be hysterical

We’re also allowed to be hysterical parents! Drive that doctor crazy with every little thing, and ask a million questions by e-mail, too. It’s okay to ask everything. Believe me there’s no question even the most delusional I haven’t heard as a nurse in the various departments. Don’t hesitate and ask even if it’s embarrassing believe me we’ve heard it all.

On Yom Kippur we ask for forgiveness from everyone, let’s not forget ourselves this year. All year long we’ve been there for them, explaining, guiding, caring, listening and protecting from the crazy world outside. It’s clear to all of us that the outside world, at least half the time, doesn’t understand our children. Lets forgive ourselves that all this time we’re didn’t always remember to worry about ourselves. But most importantly, once a year we also forgive ourselves just because at the end of the day we’re only human.

Shira

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AAC at mealtimes

How to use AAC to help improve communication at mealtimes

This post is about Augmentative and Alternative Communication (AAC). We’ll talk about how to use AAC at mealtimes to help communication. We will expand on the use of AAC picture cards, as a supportive tool for a healthy and varied diet. Scroll to the bottom of the post to see the instructions on how to make an AAC binder and cards for mealtimes.

Cover page for the AAC at mealtimes binder

What is AAC

Before we can go into detail about using AAC at mealtimes to introduce a more diverse diet, we’ll begin by explaining shortly what AAC cards are, and how they can contribute to the daily functioning of people who have difficulty communicating verbally.

What is the PECS method

PECS picture exchange communication system – a behavioral approach to using AAC picture cards or communication boards on electronic devices.

In this method, the child points to a picture of a word that he wants to say, and if the child can, we encourage him to say the word or some of the syllables (for example, carrot. We will see the picture of a carrot on the picture board , say the word carrot, break it down into syllables Ka-Rut, and try to help the child express it). The use of PECS should be taught gradually.

First the child will be encouraged only to point at the image with the assistance of the parent. We will move the child’s hand on top of the images until he stops. We’ll say the word aloud, and pass it on to the sentence strip, to signal that that the child has chosen. We will introduce the contents of the image, either in the real product or in a product that simulates it for example a plastic carrot for the carrot image.

Next we’ll add actions images, for example an image that expresses the term “I want”. At first, we help the child transfer the action images along with the object images he wants, in order to build a sentence with the images. First, with one object image at a time, and slowly we expand the image binder, with images that the child can use. This stage can take a short time, or take years to complete. It is hard to anticipate what the child’s ability will be in advance.

Using the PECS method to encourage verbalizing

When the first stage is already established, and the child knows how to use the picture panel himself to communicate his desires, we can attempt to try the next step: encouraging the child to verbalize the content of the images. We’ll point to a picture the child has chosen and pronounce it aloud, while helping the child pronounce the word, breaking down the word into syllables. We will continue with the same method as before, but with a little more emphasis on verbalizing. We will be very patient with children and attentive to their needs. This stage is very difficult for a lot of children.

According to some studies, the use of PECS does not encourage verbal communication, but they do encourage the initiation of communication. A well-practiced child will make more attempts to ask his caregivers for what he wants. This behavior can be used in conjunction with other methods to encourage verbalizing, according to the child’s ability.

AAC versus PECS

The purpose of AAC is to give voice to children and adults who are not verbal. The cause can be vary: autism, selective muteness, surgeries involving vocal cords, to Alzheimer’s or age-compatible memory decline. It’s important to work with a lot of patience, make sure the images are clear to the user, and be consistent. Many people object the PECS method due to reported malpractice and the rigidity of behavioral science methods. AAC does not have to be used with the PECS method, and can be introduced to the child in a way you will decide.

Technological versus physical AAC

You can use a tablet, and there are excellent apps for AAC. If you get along well with technology, it can be excellent, and it becomes much more accessible, searching between hundreds of cards for the right picture.

But the tablet has very significant drawbacks: it’s expensive (and good AAC apps also cost money), fragile (even with very durable covers, kids with bursts of rage manage to shatter them), not waterproof (easy to solve with an appropriate cover), slow (you wait for the tablet to open, then the app, then find the right chart, and this can feel like an eternity during a tantrum), and requires charging (not always a problem, but sometimes when you need it the most, it needs charging).

If you want to use an AAC device at mealtimes, you better have a good waterproof cover for the tablet.

Physical AAC

Using physical AAC is sometimes very cumbersome, and it’s a hassle to make, but used alone or in conjunction with apps, it sometimes completely changes the atmosphere at home for the better, because the child feels less frustrated, when he can express his wishes.

If you don’t get along with technology, or if you want a less expensive option than with equipment that might be stolen, Making your own AAC picture card binders are a great solution. They are durable, not a product that is usually stolen, will not break or tear easily and cheap. It’s convenient to send the child with a mini binder out of the house. Special needs kindergartens usually have a combination or tablet. A good place to start, is an initial guidance from the kindergarten staff, or therapists that accompany you. At first it’s hard but slowly it gets easier. Keep the tabs in an agreed upon place, where the child will get used to reaching them himself.

How to use AAC at mealtimes

How to use AAC at mealtimes:

1. First, all the cards related to the meal must be prepared: I want, a plate, utensils, a glass/bottle, thirsty, hungry, and all the foods that will be on the table.

2. Place the AAC meal pad on the table, and place all the cards on the top bar, and the empty child’s plate.

3. The child is seated, and according to his ability, cards are used to communicate what is put on his plate.

4. To ask for anything, the child points to the card they are asking for, and alone, or with your help, will move it to their sentence strip. That’s how to mark the execution of a request. Immediately after the request, we will give him what was requested. It is important to perform it immediately, to solidify the context between the image cards, the request and the result.

Sample breakfast, with communication tabs

Why use AAC at mealtimes

ASD kids usually have problems around food. Usually because of problems with sensory processing disorders and sensory regulation. Sometimes because they just can’t sit on a chair. They’re usually very picky with food. AAC won’t solve all the problems, but it might encourage them to experiment with foods that are on the table, and with AAC they’ll have a way to ask for it with less frustration.

How to introduce the use of ACC cards at mealtimes

In the initial stages, we will point to a card with one hand and the food in the other to make the link between image and tangible food. You can pick up your card and get it close to the food. Say aloud the name of the food (use different voices or anything that will make the ceremony more interesting). Repeat several times, and do so with more foods. There’s no need to get a positive response from the kid, and definitely stop if he seems frustrated with the new drama. We’ll repeat the ceremony until we feel there’s an understanding.

Then we’ll point for the kid at the cards, put the cards on the sentence strip for him, and put the food on a plate according to the selected cards. We’ll narrate every action we take. Use minimal narration: a short, clear sentence. For example, rice. We’ll point to the rice card and say rice. We’ll move the card to the sentence strip from the word bank, and then put rice on the plate.

Initial independence in use

Next, the child will point to a card himself, or with the help of an adult, physically guiding the child to move his hand between the pictures, and we will put the card for him on the sentence strip, before we put the food item he has chosen on the plate. We’ll narrate all the actions, (hopefully he’ll understand that he also needs to verbalize the actions, and we can encourage him to communicate).

Independent use

Next, the kid takes his own card, puts it on the sentence strip, points to the card, and then gets the food. We still narrate each action.

Advanced Independent use

In advanced stages, we will instruct the child to create a sentence to express his wishes by combining cards. For instance, “I want” + “cucumber”, or “I want” + “to eat” + “cucumber.” The child should at least point to the words in the correct order, after placing them on the sentence strip. They can be arranged for him in the right order, if he couldn’t do it alone. If he’s verbal, he can be asked to say the sentence (alone or echo after us).

AAC for snacks

When the child is sufficiently practiced using the method you can apply it out of mealtimes and other situations. We taped a velcro strip on the fridge with a small number of common options. When the kid wanted to snack or something from the fridge, he could use the cards to pick out a snack, without opening the fridge (usually cold schnitzel, yellow cheese, vegetable, fruit or cake).

The card binder was always available in the kitchen in case he’s frustrated with hunger, and wants a snack that’s inaccessible to him.

How to make an AAC communication binder for meals

The process of creating a physical AAC binder is not complex, although the work itself is a bit arduous.

Required equipment:

  1. Hard Binder
  2. Lamination machine
  3. Lamination Pages
  4. Printed images for AAC cards
  5. Hook and loop velcro straps with sticky backs
  6. scissors
  7. hole punch

How to make an AAC food binder , step by step

1. Make an inventory of all foods and actions related to eating that the child eats or uses (add extra food items that are common in your house).

2. Create the images for the cards. You can use an AAC app or website to create grids to print, you can download photos from the web and edit in an MS-Office program, you can take pictures, you can request images from the preschool, you can draw the images, and more. Write the context of each image below the image to produce consistent language: so a tomato will always be called by one word, rather than another, or in another language. All types of tomatoes are tomatoes, unless we put a separate picture (i.e. cherry tomato). Language consistency is important. If you decide to read the words in one language, stick to it while using AAC.

3. If you’ve decided on a tablet app, build the menu in the app. If you decide on paper cards continue to the next steps.

4. Print the tabs – preferably on a color printer.

5. Cut the images.

6. Place spaced in lamination pages.

7. Laminate in a lamination machine.

8. On the back of each card stick a piece of male velcro.

9. Cut the plastic around the cards.

Stages of work for making a binder

1. Prepare dividers for the binder with female velcro strips for the cards. You can use laminated pages in a machine to get a hard sheet for the divider.

2. Punch holes and put in the binder.

3. Fill the dividers with cards.

4. Prepare the AAC meal pad: a picture of a plate in the center of a page, and transfer in lamination. (example below)

5. On the meal pad, tape female velcro strips at the top and sides.

6. Punch holes and add to the binder.

7. Place a cover photo on the binder to make it clear that this is the AAC food binder.

Meal Communication Surface

More tips on how to use AAC at mealtimes

1. Arrange a permanent place for the AAC equipment. The child will adjust more easily to use it himself, and you will have an easier time if you don’t have to look for it all over the house.

2. Always save backup AAC files on your computer and smartphone!

3. Make extra cards and meal pads in case of wear and tear, or loss.

4. Fill the meal pad, with cards of food that are usually on the table, even if the child does not normally eat those. He might want to taste something the parents eat that he couldn’t ask for.

5. At the beginning of the meal, all the food items on the table must be presented and cards provided, so that the child can make a choice. If you usually put together a plate in the kitchen and serve it to the table, you can put together the plate with the cards in the kitchen, or you will have to serve food to the table in separate bowls to choose from.

6. If the child needs to take medication along with the meal, the appropriate card can be present on the meal pad.

7. This method should be used consistently because it will create a clear food-related routine for the child. Autistic kids function much better with regular routines.

Pleasant work

Shira and Hagai