I have this idea in my head that a seizure is some interrupted blood flow in the brain. I do not know what the interrupted blood flow will mean, whether it causes some autonomic dysfunction that makes the body shake or whether it affects organs or brain tissue. This is my very primitive and uneducated definition of a seizure.
Okay. Having looked up what a seizure really is, at least, I’m honest in my ignorance. The reality? Here’s the answer to what is a seizure from Epilepsy.com:
A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. Some seizures are hardly noticed—perhaps a feeling of “pins and needles” in one thumb for a few seconds. During other seizures, the person may become unconscious, fall to the floor, and jerk violently for several minutes. Between these extremes is an astonishing range of feelings and actions.
Many people (including some people with seizures) think that the only real seizures are ones with strong, uncontrolled movements. They think that having a strange feeling in the stomach, blanking out for a few seconds, or jerking one arm a few times is nothing important, at most a minor “spell.” But in fact, any change in feeling or behavior that results from an uncontrolled discharge of electricity in the brain is a seizure.
I’ll give you three guesses why I’m writing about this.
Yes, the EEG results are back. My five year old son is having seizures in his sleep.
I was not supposed to find out today. It was a fluke. I had scheduled a pediatrician’s appointment to update his immunizations for school. When the doctor came in, she asked for an update on his autism treatment. I told her that we were going back to the neurologist for the results of that (horrific) EEG and the genetic testing. She opened some windows on her computer and got access to the EEG results. We read them together.
I have online access to my son’s records so I did not ask to take a hard copy home with me and it was still in rough draft (blanks the transcriber of the dictated report left). What was clear was that in stage 2 and 3 of his sleep, he is having seizures. I did not understand all the terminology. I thought I could read it at home. Apparently, I can’t access it until the clinician – our neurologist, finalizes it and provides it to me.
How do I even describe what I felt? Shock. Fear. Ignorance. A feeling like I was falling. I came home and I read. I found out what a seizure is. I read our neurologist’s book “Autism and its Medical Management”. And I found out what treatment is available and what it can do.
First, I read the chapter called, “Electroencephalography” – the EEG. The fascinating and useful information I took away from this chapter is that my son’s neurologist has published data as follows:
“Of 889 ASD children without prior seizures or known medications and no prior abnormal EEG, there were abnormal EEG patterns in sleep in 60.7 percent of the initial EEG studies.”
My son is now in that 60.7 percent.
I remember telling Dr. C, during our first appointment, that my son never slept through a single night from the time he was born until after he had pneumonia and was diagnosed with asthma at age 2.5. After that diagnosis, he has with very rare exceptions, always slept through the night. I always thought it was because he couldn’t breathe and he needed his asthma medication.
Dr. C asked me if my son received a steroid treatment in connection with his pneumonia. He had. Prednisone in oral form. When he took it, he threw up for the first time in his life. Dr. C told me that it might have been the prednisone that caused his sleep pattern to change. This initially blew me away. I promptly forgot about it until my son became a statistic.
I turned to Chapter 20 – “Treating EEG Abnormalities and Epilepsy”. Dr. C prefaces his discussion by stating there is debate among neurologists as to the meaning of EEG abnormalities in ASD. Then, he says he has clinical findings that show a lot of promise. This is the potentially exciting part:
“With treatment, I have observed a greater than 60 percent rate of EEG normalization or significant improvement in spike [the abnormal part of the EEG] frequency with correlation in receptive language performance based on clinical observation and parental reports. In 173 patients with an abnormal initial overnight abnormal EEG, 69 percent improved with just valproic acid treatment on their EEG… There have been case reports of reversal of autistic symptoms before, as well as smaller series of reporting improved behavior after, treatment with valproic acid in autistic children with abnormal EEG patterns without epilepsy.”
As many of you could probably understand, reading this made me tearful. Now, of course, all drugs come with side effects. Dr. C has detailed those for valproic acid. He also notes that perhaps early treatment with valproic acid may prevent potential epileptic progression toward full-blown clinical seizures as a child gets older. He also notes that sleep may improve and moods may stabilize with this treatment.
Until I actually meet with Dr. C, I will not know whether the treatments he describes in his book are things that he will recommend for my son or whether, or to what extent, the seizures are significant, or potentially related to my child’s ASD.
Meanwhile, I would encourage all of you to take your child for an EEG if he/she has not had one. Who knows what it could mean for each child with ASD? (Just make sure the technologists know what they are doing.)