After receiving an autism diagnosis for Dolev, he had experienced an epileptic seizure. In order to try to get some answers, we started running the recommended tests. While he was still under anesthesia after an epilepsy brain scan (MRI) he had a serious seizure.
I realized that my son almost did not survive this seizure. If the CPR hadn’t succeeded he would have died.
I didn’t tell anyone.
Today I want to share this traumatizing experience. I feel that by exposing this story I can get some weight off my chest. Maybe the information here will serve someone.
Dolev’s first Tonic-clonic seizure
On Passover 2016, Dolev experienced his first tonic-clonic seizure.
It was on my Parents in Law’s balcony. In front of Dolev’s grandfather in a little inflatable pool.
Luckily I was close enough to notice something was happening. And luckily, as a nurse, I already knew what to do during a seizure.
After the seizure, we rushed to the hospital. We started making inquiries that should have come much earlier.
The first test was an EEG. An epilepsy brain scan which shows if the brainwaves are normal or unbalanced. According to EEG, it turns out that he was convulsing all the time.
Suddenly, we remembered signs of seizures we saw in infancy. Back then, we noticed long fits of daydreaming and eye-rolling.
It was especially upsetting that the medical staff we saw, said everything was fine. “It’s nothing. He’ll get over it.”
The EEG results showed that it was indeed epilepsy. Dolev started taking anti-epileptic medications.
The next test in line was a brain MRI. This epilepsy brain scan checks if a “space occupying lesion” is responsible for the seizures. (Luckily there was none)
The Epilepsy brain scan that nearly killed my son
My father and I were in the waiting room, together with Dolev’s baby brother. An anesthesiologist suddenly entered that room, and a resuscitation team was called in. We didn’t think for a moment that it was for us.
After about 40 minutes they let us in. My child, barely three years old, looks terrible. He was connected to an oxygen mask. All the bells were ringing in my head.
At first, they didn’t tell us anything. They knew I was a nurse.
When he finally woke up, the doctor pulled me aside and quietly told me that he had an epilepsy seizure under anesthesia during the brain scan.
I kept quiet and listened. He said it can happen with any anesthesia. He is fine now, and in a few hours, we will be discharged. As long as Dolev recovers. Otherwise, they will hospitalize him for the night.
I didn’t tell my dad anything. There was no point. He sat next to my son gray with worry. It even worried me more.
The strange part is that until I opened his medical file a few days ago, for something else, and came across the MRI documents, I had completely forgotten about it. It happened so many times with him that I forgot.
Sedation During the Infusion of the Stem Cells
My heart was pounding as I held him to be given sedation. I stood by him the whole process.
The doctor, the nurse in the room, and I counted every drop in real anxiety that something would go wrong.
But everything went smoothly, and within 25 minutes and he was finished. Two hours later the effect of the sedation wore off completely, and he returned to his old bouncy self.
This time was no epileptic seizure under sedation.
Back to sanity at least temporarily
Before stem cell therapy, we could not find a combination of drugs that would balance the seizures. Dolev’s difficult situation pushed us to take the difficult decision to participate in an experimental treatment.
Seeing your children go through a difficult medical experience is traumatic. Sometimes it takes years until the body is ready to cope. And then in retrospect, everything looks different. Like it never happened to me at all.
I’m not sure where I would be today if we hadn’t been lucky enough to stop the seizures with the stem cells.
Today I instruct parents and educational staff on how to recognize epileptic seizures, and how to act during such events. I make sure that everyone who comes into contact with my children has first aid training from time to time.
I would be happy to be at your service if you need epilepsy guidance. Hagai and I will also be happy to be at your service if you want help reaching stem cell therapy.
Make sure you get your epilepsy brain scans on time according to your doctor’s instructions.
It takes a village to raise a child
I recommend looking for support groups with experienced special needs parents. For this purpose, we have opened another Facebook group for parenting skills. This is in addition to our Stem cell therapy support group for families looking for information about the treatment based on umbilical cord blood or stem cells. Both of these groups are mainly for Hebrew speakers but you are welcome to join if you think it can benefit you.
For those who are not active on Facebook, join our silent WhatsApp group, where you will receive notifications about events we organize. Again most of these will be in Hebrew, but you can catch the odd English lectures. You can find recordings of these on our youtube channel.
The Autism Essentials Israel blog is written by Hagai and Shira Reiner, two parents of children with special needs – autism, epilepsy, and more. We focus on the essentials of raising special needs children in Israel, but much of our content will be relevant globally
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