“S” is for Seizures.

Before I look and learn, I am – in all honest ignorance -writing down my guess to the question of:  What is a seizure?

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.

Remember 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.)

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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30 Responses to “S” is for Seizures.

  1. I’m sorry to hear this. Good luck with your son’s treatment! My daughter has been having seizures since 6 months old (she’s 3 1/2 now). I think the statistic is something like 25-30% of kids with autism also have seizures. I hate them.

    • solodialogue says:

      Thank you, Christine for your comment and for stopping in! I now have many more questions than answers, especially since I really believed the EEG would be normal. I, too am sorry to hear that your daughter also has seizures. I haven’t “seen” ours but I already hate them – they are very scary. I hope we can share a lot of useful information that will benefit both our children!

  2. Wow…. I’ve been following this story with interest (even though reading about the process was so scary and made me so mad about the way you two were treated). I know you must have mixed feelings about this- no one wants to hear that their child is having seizures of course, but at the same time you might see some very big changes and improvements once he’s on the meds. Keep us posted!

    • solodialogue says:

      Thanks Christy! The hospital has actually given me a glimpse of a response. They wrote saying they are doing an “investigation” and will contact me in four weeks. We shall see. Given that they have not sought to interview me for their “investigation” at this point, I remain suspicious… I will keep you posted!

  3. C... says:

    My son never slept through the night until he was 4 years old. Can you imagine what a nut I was by then? I wonder if he’d ever had seizures or does? Thanks for posting this… it could prove to be necessary for us.

    • solodialogue says:

      I hope you can get some answers, Claudia. It may be unrelated sleep issues for your son but the statistics do speak pretty loudly. I really thought my son’s EEG would come back normal. It definitely is worth checking out!

  4. Kelly Hafer says:

    Hey Karen – we had the EEGs, but ours were done so differently than yours: only for about 30 minutes. I am going to talk to our developmental ped about doing it the way you did. I cannot imagine how your emotions may be churning right now: fear at the unknown, the glimmer of hope that the valporic acid may give, sadness at yet one more “thing” Tootles has to go through…Boy. This parenting thing ain’t for wimps, eh? Stay strong. We’re all pulling for you guys. ((hugs))

    • solodialogue says:

      I’m glad you will ask for the longer EEG – Jessica is right. It is called a 24 hour ambulatory EEG. And yes, you summed up my emotions quite nicely… I needed those hugs!

  5. @Kelly If you’ve had a short EEG, you may want to ask your Dr for an Ambulatory EEG, which should give better results.

    Karen, I’m actually happy to hear you had this outcome. Having treatment available to help a problem your son has had for so long is so exciting. We had our EEG because we couldn’t tell if my son’s zone-outs were seizures or not. Getting it ruled out was useful to make sure we’d covered every treatment option and isn’t that the most important thing for special needs parents?

    Thanks for writing so honestly about this and I’m wishing you guys lots of luck. Lots of kids, ASD or not, get a lot of improvement when medicated for seizures. Good luck!

    • solodialogue says:

      Thanks for your kind words and for your guidance through the procedure, Jessica! Of all the things I read, your blog post about the procedure was the most helpful to us (even though the actual procedure was very ugly!) I am filled with hope and fear – as I get very nervous when it comes to medication of any kind. But the promise shown in the information I’ve seen so far is important stuff for the whole autism community. I had to share it.

  6. I just want to add something. To anyone reading this…if you think your child is having seizures but nothing is showing on EEGs, keep pushing! My daughter’s EEGs (even the longer ones) were all normal. We only got results last February when we brought her into the hospital in status. Finally then her seizures were seen on the EEG. Up until then we had several doctors saying that she wasn’t having seizures because hers are atypical. But I knew. So if you’re having trouble getting a diagnosis, don’t give up!

    • solodialogue says:

      Thanks for sharing this Christine. It is a scary thing to go through an EEG procedure with an autistic child. It is scarier to leave this potential condition undiagnosed. The instinct of a parent is something that should not be ignored. It’s great that you kept pushing. We always remain our childrens’ greatest advocates!

  7. Jim W. says:

    I’ve never suspected that Lily was having seizures. She does actually sleep throughout the night, but (we believe) wakes when she has to go to the bathroom (or goes).

    I’m not sure how to feel about this blog post. . . on the one side it seems sad, but on the other side promising. . . I can’t imagine how YOU must be taking it. It almost seems like there’s MORE promise BECAUSE he’s having seizures. That his seizures make him a candidate for an effective treatment where NOT having the seizures would mean he’s not a candidate. . .

    Did I read that correctly?

    • solodialogue says:

      I had no clue that my son was having seizure activity in his sleep. He sleeps soundly and through the night. There has been no outward sign of this happening. So please know that seizures can be undetectable. I was sure that this EEG would reveal nothing. I was wrong! Getting your child checked for this silent activity is important.

      I hope it will lead us somewhere very positive. I don’t know when and how these medications are given and to whom. We have not yet met with the specialists. The only thing I can say is that it appears valproic acid (Depakote for example) is prescribed by this particular doctor for certain children with ASD. I’m sure each case depends on its own factors. To me, it seems that this med is given to children with ASD when they manifest the seizure activity. Whether it’s done when there is no seizure activity – I don’t know. I do remember Dr. C telling us that there are also treatments when there is no seizure activity. I remember because I thought that would be the group we’d fall into…. wrong again.

      • Jim W. says:

        Well, that may happen yet. Now that we’re under the care of a pediatrician specializing in kids with autism. . . who KNOWS where he’ll send us.

  8. So sorry Karen. Seizures suck. For MANY MANY years.. we attempted EEG’s with Tommy. We could never get one completed (they were very combative.. and not pretty. Similar to your little guy getting his put on). Tommy’s behaviors, on paper, LOOKED very much like they were seizure related. FINALLY when he was 10, we went in for the full monty. We were going to do a 24 hour EEG at the Bronx Childrens Hospital. 24 hours turned in 5 days! They wanted to keep him longer and longer because it just SEEMED as if they were seizure related. After 5 days- nada. However, he never HAD a behavior there. 5 years later, my daughter has been diagnosed with epilepsy. We’ve decided not to torture ourselves with more EEG’s with Tommy due to one of his medications is a med used for seizures (secondary- its a mood stabilizer) I really hoped it was going to be positive for seizures. I know, I sound horrible. I was just hoping there would be an ANSWER for something.. since Autism tends to leave us all wandering about not knowing where to go with our kids. At least now you know the madness that your son went through, was for something. Though it could have been WAY BETTER orchestrated (the hospital staff), at least now you have an answer. Hopefully the treatment will be easy. You’re in my thoughts 🙂

    • solodialogue says:

      What a frustrating series of events for your attempted EEGs! It’s weird that you say this about “seeming” to be seizure-related in light of how Christine commented that she knew there was some seizure activity but it was atypical for her daughter. I can totally understand not torturing yourselves over more EEGs, especially if one of Tommy’s meds is for that purpose.

      Yes, on the one hand, I am so glad the madness has yielded some information that is important! I do believe it could have been better orchestrated myself… hospital is supposedly conducting an investigation… Thank you for your kindness, my friend. 🙂

  9. Karla (Mom2MissK) says:

    There is bad news in your post (seizures suck) and good (seizures can be treated)… I know you must be a topsy turvy bundle of raw emotion and anxiety right now, but I hope you can look at the findings in positive light as well. Another of T’s mysteries is no longer a mystery. You will have information. You will be able to use this information to make progress. You have an opportunity to improve T’s life dramatically. You may have to learn through trial and error, but the door is now open for you to learn… And if there is anyone out there who is better equipped than you to research and find the best treatment options out there for T, I dare you to find her for me.

    You will be ok. T is going to be ok. And I will be here for you if you need me!

    • solodialogue says:

      It’s a mixed bag, isn’t it? I’m still reeling from the news but it’s not like the onset was just yesterday. Clearly, this has probably been going on throughout his whole little life, unbeknownst to me. 😦 I do know that Dr. C is the right path. Facing the things I don’t want to face is the best way to make progress, so bring it on!! (And thanks for always, always being there for me!)

  10. Lana Rush says:

    Karen, I’m so sorry to hear your news. But Karla is right! You can do this. Yes, there will be more questions than answers for a little while. But you will seek out those answers and armed with knowledge, you’ll do what you need to do for your son. I will be thinking of you as you begin walking this new path.

  11. Sorry to hear. Hopefully with treatment the seizures will go away completely! My son had the 72 hour EEG at 19 months old. He is 2 now. We had two neuros tell us that he was not having seizures. He had staring spells, which his current neuro indicated are just something that kids his age do sometimes. He rarely has those anymore, but his sleep patterns are crazy. Mostly when his sensory processing is off and he is having what I call a “bad cycle”. Honestly, we will probably press the EEG again as he gets a little older if the sleep patterns continue to be crazy.

    I noticed where you mentioned geneticist. Have you actually gone to one or is it in the works? We did a chromosomal micro array study on my son and he has a small duplication on one of his chromosomes. The kicker…… There are only 6 other like him who have the same duplication with the same chromosome. Quite honestly, based on the information from our geneticist, my son’s chromosomal abnormality is not an explanation for him being on the autism spectrum. I do believe that genetics testing is good because it shows other health problems that people with the same abnormalities have, but the testing does not really prove a causal relationship. It’s like okay, some have heart problems, but there is a question as to whether the heart problems are caused because of the abnormality or is it they have this abnormality and also have heart problems. That is just one example of a case that has the same chromosomal abnormality as my son.

    Anyway, good luck with everything!

    Robert

  12. Lizbeth says:

    I was wondering what the results were–both of the EEG and with the less than stellar professionals you had to deal with. Now we know. Sigh. It isn’t easy, is it? I’m thinking of you. I’m sure this is a shock and trying to process it is anything but easy. I mean, in his sleep, who knew?!? Hugs lady, hugs.

    I am curious–what prompted you to do the EEG? It’s not something that has ever been brought up with us and am wondering how you were prompted to get one done. More hugs in the meantime.

    xxoo-L

  13. Tam says:

    Just be very very very careful with valproic acid. If he starts it please make them start very low dose.

  14. Broot says:

    I see a glimmer of light. I know it’s scary, too.

  15. Getting my son to a neurologist is high on my list of things to do. There’s just so much to deal with from organizing ABA schedules to dealing with the school and other appointments. But I definitely have to get it done. Stay tuned, hopefully I’ll have my own story of how it went before too long!

  16. one more thing, and then I’ll leave you alone! 🙂 When we started on our “seizure journey” I looked all over the internet for help. One place that was really helpful was the Epilepsy Foundation community on ning…they have forums including one specifically for parents. http://epilepsyfoundation.ning.com/

  17. Grace says:

    At our last dev ped appointment, before you started writing about all of this, I asked about getting a neuropsych consult on Ryan. It came down to insurance, which wouldn’t cover it. (Yeah, I had to choose out-of-state doctors for Ryan. As if all this insurance crap isn’t complicated enough.) But this post has really made me think.

    I know these results are scary, but I’m hopeful they will lead you to whatever Tootles needs.

  18. ElizOF says:

    This quite some news Karen… Does he really need the meds that Dr. C was suggesting? Any chance this will stay same and not progress to full blown seizures? Questions I would ask as a parent too. Please keep us posted. Virtual hugs…

  19. Oh goodness! Glad you got some answers, though as always in this parenting game, it seems to lead to more questions. Best of luck with it all. Thinking of you.

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