What You Can’t See Can Hurt You.

This post is Part I in our journey with our new seizure diagnosis.  

The left mid-temporal lobe of the left hemisphere.  That’s where the seizures are occurring. It’s really no surprise for me to learn that language function is centered in the left hemisphere.

I have often heard discussions of my son’s receptive and expressive language in ABA meetings.  Finally, I’ve learned what that means, at least in a rudimentary way:

Visual and auditory input to the brain is known as “afferent” or “receptive”.

Motor output – (speech) is known as “efferent” or “expressive”.

The frontal, parietal and temporal lobes of the brain are involved in operating the language function of the brain.  The receptive (visual and auditory input) function operates in Wernicke’s Area, partially in the temporal area.  According to About.com:

“The temporal lobes play an important role in organizing sensory input, auditory perception, language and speech production, as well as memory association and formation…

The temporal lobes are involved in several functions of the body including:

  • Auditory Perception
  • Memory
  • Speech
  • Emotional Responses
  • Visual Perception”

Well, that explains something, doesn’t it?  I learned today that there is a clear physiological basis for my little boy having difficulty distinguishing sounds from background noise, in addition to his expressive and receptive language and speech issues.

My son’s abnormal seizure activity is focused in this temporal region.  The seizures are not spreading to other regions.  This means that my son must undergo an MRI, under anesthesia, to rule out any cysts or tumors.

At this point, as a mother, I have to put aside any fear and look completely objectively at what needs to be done.  He must have the anesthesia and he must have the MRI.  There is no justification for not ruling out the rare possibility that he has any structural abnormality in the brain.  On an intellectual level, I can understand the necessity of the procedure.  On a mother-level, it terrifies me that he is going to have anesthesia.  I hate it.  And I’m scared.  But I will do it because I must do everything I can for my son.

When I first posted on Wednesday that I found out my son is having seizures, one of my bloggy friends asked what prompted me to have the EEG done.  The simple answer is that I trusted our neurologist to know what he was doing.  I did not believe the EEG would show anything at all but I trusted anyway.  That trust was well placed.

My sweet boy sleeps...

My son’s EEG revealed that his seizures are occurring intermittently throughout the sleep stages, but predominantly in Stage 2 of his sleep.  Having only a vague notion of the stages of sleep, I learned the following:

Stage 1 is the beginning of the sleep cycle and light stage of sleep, considered a transition period between wakefulness and sleep. It only lasts around 5-10 minutes. If you wake someone during this stage, they might report that they weren’t really asleep.

Stage 2 – The second stage of sleep.  Lasts for approximately 20 minutes. The brain begins to produce bursts of rapid, rhythmic brain wave activity known as sleep spindles. Body temperature starts to decrease and heart rate begins to slow.

Stage 3 -Deep, slow brain waves known as delta waves begin to emerge during stage 3 which is a transitional period between light and a very deep sleep.

Stage 4 is a deep sleep that lasts for approximately 30 minutes. Bed-wetting and sleepwalking are most likely to occur at the end of stage 4 sleep.

Stage 5  -Most dreaming occurs during the fifth stage of sleep, known as rapid eye movement (REM) sleep.  In REM sleep there is also increased respiration rate and increased brain activity and the brain and other body systems become more active, but muscles become more relaxed. Dreaming occurs because of increased brain activity, but voluntary muscles become paralyzed.

Apparently, sleep does not progress through these stages in sequence. Sleep begins in stage 1 and progresses into stages 2, 3 and 4. After stage 4, stage 3 and then stage 2 sleep are repeated before entering REM sleep. Once REM sleep is over, the body usually returns to stage 2 sleep. Sleep cycles through these stages approximately four or five times throughout the night.

The REM stage usually starts about an hour and a half after falling asleep. The first cycle of REM sleep might last only a short amount of time, but each cycle becomes longer. REM sleep can last up to an hour.

You know, there are so many turns and twists on the journey through a life with autism that only begin with a diagnosis.  I’ve stumbled along, so many times lost, without a map, and without directions.  It’s so often true that we are given the diagnosis and sent out into the fog, alone, to navigate our way through the unknown, trying to do what is best for our children.

There are many people out there who prey upon our vulnerability.  They sell stories and ideas and snake oil to us.  They can put it in pretty boxes and use big words and stories of cures and miracles.  We want to believe.  We want to try.  I wanted to believe and I wanted to try.

Walking toward the hyperbaric oxygen chambers, the B12 shots, the other “alternatives”, my instincts (and good advice from my many bloggy friends) took me back to our pediatrician to find out the risks of these things.  And while I believe our pediatrician failed my son in not sending us to the neurologist right after the diagnosis, she did send us there at the beginning of this summer, when I came to her looking for answers.

Now, my son has a respected head of the Autism Treatment Center who is a specialist in the field of pediatric neurology looking for answers.  This is the best of medicine, science, and reality.  And I believe we’ll stick with it for a while…

Please remember that I never saw any signs that my son might be having any seizure activity whatsoever.  I honestly and truly believed that his EEG would come back negative and the whole EEG experience would be a complete waste of time.  I believed the whole procedure (and the hell that he went through in attaching and removing the electrodes) was unjustified.

DO YOU SEE HOW WRONG I WAS?  

PLEASE, PLEASE, have your child tested.  Whether you believe that there are signs or symptoms of seizure activity or not, you really don’t know.  Over 60 percent of autistic children who undergo the overnight EEG have abnormal readings.  There were no symptoms in our case!

WHAT YOU CAN’T SEE – CAN HURT YOUR CHILD… 

It’s up to us as our children’s best, and sometimes only, advocates to do everything we can for them.  This is one of those things.  The sooner, the better.

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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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21 Responses to What You Can’t See Can Hurt You.

  1. Jim W. says:

    I believe it’s in the works. It’s one of the things that came up during our conversation with “THE pediatric autism doctor” for our area. Every area seems to have one. Sounds like you found your area’s version too.

  2. Jen says:

    I am SO glad you wrote this, and I have chills right now reading it. I have been going back and forth about asking for the EEG for Katie. I am like, well, I haven’t *seen* any seizure activity, and don’t want to look like a test seeking parent, but this is very scary. That something could be happening and we have NO clue or evidence of right now. We have a neuro appt coming up soon, so I am definitely going to bring it up. Even if it comes back completely normal, at least I will know! Good luck with the MRI, too!! K has been through 3 surgeries thus far in her short life, and it never gets easier with the anesthesia or letting go of that control. *hugs*

    • solodialogue says:

      Oh, I’m so glad Jen! This is good news. It’s important just to rule it out. I will check in with you about it in a while. And if you ever want to talk – you know where to find me…
      Katie is a brave little girl and it really helps me to hear that you have been through the anesthesia thing too – weird, huh? But I guess it’s just soothing to know that others understand what you are going through.

  3. So sorry you all have to go through this, but I have a feeling that by sharing your experiences on this blog you are going to help a lot of people. I’m thinking of bringing up this topic at A’s next appt.

    • solodialogue says:

      Please bring it up, Christy!! It never hurts to talk about it and rule it out! I hope many someones are helped by these posts! I don’t know why but once I learned this, I just recognized how important it was to do what is considered “routine” testing. Don’t forget that I really had no clue this was even possible… ❤

  4. Julie says:

    Exceptional post (as usual). I hate, with the fire of a million suns, the vultures who prey upon the most vunerable of our society. My husband’s cousin sells Kenga water (google it – it’s a $3k contraption that ionizes water) and swears it CURES autism, cancer, etc. It makes me furious that she pushes this shit on people who just don’t know any better. What special needs parent do you know that has an extra $3,000 laying around???? Good for you for following your instincts! Keep up the good work Warrior Mom!

    • solodialogue says:

      Thanks Julie! “Kengan” water?! I did google it – just enough junk “science” to sound believable. Some people have no conscience.

      It takes good work to know good work – and coming from you – the kind words are very appreciated!! 🙂

  5. Lizbeth says:

    Thank you for that. Ok, another question for you—why go to a neurologist in the first place? Feel free to send me a private message. I only ask as it has NEVER been brought up to us before. Sure we have all the speech, ot, child psych but neuro has never been addressed. I’m thinking maybe because we had a cross country move in the middle of things. I don’t know.

    Anyway—when he goes in for the MRI–ask them (preferably anesthesia) for anti-nausea meds. They can give him reglan or something that will keep him from puking. Just tell them you have a family history. I know that sounds sneaky but the last thing you want if for him to wake up and start puking. You want him to wake up and snuggle and not remember a bad experience.

    Hang in there hon, hang in there.

    • solodialogue says:

      Our pediatrician has openly expressed her inexperience with autism. I have searched for many alternatives to supplement his speech, OT and ABA and wondered whether any of them were viable or dangerous. At the same time, I knew I needed someone in the medical profession with that body of knowledge, education and experience to guide us. Since autism is in the brain, neurology was where I headed.

      Thanks for the great advice on the MRI. I do not want him puking on the way home! I’ll get through it, especially with great bloggy friends to support me! xoxo

  6. ElizOF says:

    Great advice and update on this subject Karen. 🙂

  7. ElizOF says:

    Finally catching up on posts and comments. TY! 🙂

  8. Broot says:

    So I’ve spent a couple of days composing, recomposing, and discarding a response to this post in my head. They were all very long, and in essence, said this:

    Wouldn’t it be interesting if they did a study on grapheme synesthetes who also happen to be on the autistic spectrum, like Tootles, and had a look to see whether they all had seizures in that part of their brain? And then took supposedly NT grapheme synesthetes (like me) and had a look to see whether we had any activity or damage or difference in that part of the brain? And then tested those of us who are grapheme synesthetes and NT to see how close we are to the spectrum? I think that would be a very very interesting study.

    • solodialogue says:

      Me too… Something of late is really, really spiking his “discussion” of color… Have you ever taken any AQ tests online? If nothing else, they are kind of funny. I just took this one. http://aq.server8.org/ My score was 31 – people with Asperger’s or high functioning autism usually score 35 or above (“normal” women score 15 and men 17)… I consider myself NT, mostly. 😉

      • Broot says:

        I scored 29. I’ve always suspected that I’m closer to the spectrum than most NTs. I know I am NT, but at the same time, I would have scored much higher on that test as a child. I’ve learned social behaviour and what not to do by watching other children who were definitely on the spectrum at school. And as I’ve mentioned before, there are people in my family that I suspect are on the spectrum, and I’m convinced that my great aunt was an Aspie.

      • solodialogue says:

        Very interesting… As I learned about the behaviors and watch my son, I remember a lot of things from my childhood that make me wonder if I would’ve been considered for the diagnosis, but I think a great deal of us are somewhere on that spectrum, at least a little bit.

  9. Broot says:

    Yes, I think the spectrum is bigger than they think it is.

  10. OMum22 says:

    Karen, can I link to this post in my blog about sleep strategies please? I think its so important that people address medical causes for sleep disturbance.

  11. Pingback: Sleeping strategies « Small But Kinda Mighty

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