Monday, December 02, 2013

Aspergers, Inattentive ADD …. and now Epilepsy

I'm writing today, because I just don't know where else to go.  I figure that anybody who actually reads this blog, though I am limited at writing posts, will have enough experience with adversity that they understand what I'm talking about.

My son had a seizure about six months ago.  We thought it was a one-off situation, due to a new medication he was taking that often lowers the seizure threshold for people.  We picked him up from his high school, where he was dazed, somewhat incoherent, and had blood all over his shirt from biting his tongue.  We drove him to the local hospital, where they did an EKG but that was pretty much it.  After a couple hours, our son was back to his regular self, and we thought nothing of it.

Until the first week in November of this year.  He had another seizure, but this time it was worse.  It lasted longer, his incoherent-state lasted longer, and we figured that he would do well to be checked out more appropriately at the hospital.  They did an MRI, and found nothing, but they kept him there in the hospital overnight for observation.  He was incredibly sleepy that day and the next.  The next day the hospital staff did an EEG, and found brain wave spikes consistent with epilepsy.  He had had a tonic-clonic seizure, his newly-obtained license would have to be taken away until he is seizure-free for six months, and he now has to take anti-seizure medication.

It took days for my son to get over the sleepiness.  His cognitive ability was shot.  It wasn't great before this -- none of his ADD medications have been working -- and now, everything he does takes three times as long as a typical person.  Homework is a nightmare.  His grades are falling.  His hopes for college are quickly dwindling.

I just can't kick-start any of my positive thinking anymore.  I think I'm just worn out.

I don't see how we can climb our way out of this hole.  I'm out of ideas.  My son is amazingly upbeat, in spite of all of this, but even he is depressed that he can no longer drive.  His first question in the hospital was "will this affect me academically?"  Well, so far, the answer is a decided YES.  I have no idea what to do for him.  Hell, I have no idea what to do for me.

The ONLY thing I can think of to do is something I've been avoiding ever since his autism diagnosis.  We very briefly tried the GFCF diet when my son was five, but since he showed no sign of gastrointestinal distress, and we couldn't see any difference in him when we tried the diet, we gave up rather quickly.  To tell you the truth, I kind of thought the GFCF diet was for whackos … people who were grasping at straws to find anything to try and improve their child on the spectrum, even if it didn't make any sense.  Well, now, I'm one of those whackos … because NOW, I'm reading study after study after study about how food intolerances can adversely affect epilepsy, and I'm thinking it's time to bite the bullet and do a combination of the Gluten-free, Modified Atkins Diet, in an attempt to improve my son's outlook.  Quite frankly, I have no other option, because everything I've been reading in the last three weeks doesn't give me a lot of hope.

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At 7:46 PM, Blogger MaeFerguson said...

Just read your post. I can relate to your pain. My daughter was diagnosed with epilepsy before we got the autism diagnosis. Seizures began in middle school, autism diagnosis in last year of high school.

Have never tried a diet but might give it a try. She still isn't driving but we recently found a two-year college with on campus housing and so that is our next journey. She was misdiagnosed at a young age with ADD. Never was on any medication until the seizures. Epilepsy and Autism is a unique and different experience which requires patience and adjustment.


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