Posted on 3 Comments

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

Posted on Leave a comment

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.

Posted on Leave a comment

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.