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.

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.

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