Wednesday, November 30, 2011

It was scary....

Last week, Dylan's tutor sent us a video of Dylan working.  She always does this for the parents of the children she works with to show us all the magical things our children are learning.  On Tuesday, she worked with him and show the video and he did this weird head/eye roll thing.  I chalked it up to his being silly.

Then, after his work with his tutor, he went to go play.  His day care has this two story play area (think a McDonald's type playland only mesh).  He proceeded to have an epic, earth shattering meltdown.  He latched onto a pole and had to be pried off (all the while hysterical crying).  He then laid down and refused to move.  Just crying for Mommy and not saying what had happened.  I got there about 15 minutes into it and had to crawl into the structure to get him.  Ordinarily, he would have acknowledged me but he didn't.  I pulled him onto my chest and he was dead weight.  Just crying and mumbling.  After another 15 minutes or so, he was calm and we climbed down.  We went home, had dinner and I put him to bed.  I sat in our living room and my brain went into overdrive.  Something was off with him.  His energy was off.  He wasn't acting like himself.  I spoke with the tutor and she agreed, something wasn't right.  We called the doctor.  The next morning we went to the pediatrician (new one who we adore).  He thought it may have been a seizure so now we have to get into see the neurologist.  The one he reommended wasn't available till January 25th.  The one we saw years ago at the children's hospital wasn't available either but his nurse had him call us.  I showed him the video.  It wasn't a seizure - more than likely some self-stim behavior.

What happened in the play area?  Well, that could have been a seizure of some sort but "we don't chase one seizure".  He said that it's not like we can put him on meds for seizures without proof that he had a seizure.   When he had his seizures as a baby, his EEG was normal.   So chances are, if he's following the same pattern, he'll have a normal EEG and medication wouldn't be warranted.  Plus, if it's one seizure, how do measure if the medication is working.  Dylan's seizures as a baby were uncontrolled.  5 tonic clonic seizures in a day.  That's why they put him on medication.

Hopefully, this was just a scare and nothing more.  Good news is that he can start his new ADHD medication.  The first one ended up giving him stomach aches, aggression and he was picking his fingers raw.  Hopefully this one will do the same for his attention without the side effects.


  1. That is terrifying! I'm so sorry! I hope the doc is right, and it was a freaky, one-time thing. I'll keep my fingers crossed that it never happens again, and that the new meds work without side effects. I've been on a bunch of ADHD meds and some were much better than others with side effects...

  2. Wow - that is scary and gave me chills. I'm so sorry Dylan is going through this. The EEG will give you the answers you need. And I think you will feel better once you learn them. ((((HUGS)))) to you and Dylan while you sort it out.