Monday, June 1, 2009

Another Harley update

This morning Harley woke up and the welts looked absolutely awful...the benadryl hasn't been helping with the itching. Andrew was upset saying it had to have been misdiagnosed. To give Harley so relief I tried talking him into letting me put something on it that might help with the itching...and I thought maybe cocoa butter? I showed him the container of Body Butter for Stretch Marks I had left over from when I was pregnant with Zachary. He let me put it on...I was so happy we finally found something. It seems to soothe the itch and definitely healed the skin. I guess the thought that it said "butter" made it ok to use :D

The appt with the psychiatrist was something else though. It took much longer than usual. We discussed his meds and the recent outbursts he's been having. We've had a rough, rough week. He's been completely out of routine with no school and no therapy with CP. He has been writing threatening letters and drawing pictures....I'll leave that at that. We've had some major outbursts where we have had to remove everyone else but he and one other person from the room...We've had to set the alarms on the doors and windows. We are considering having to get him a beside commode and locking him into his room at night (this is legal if done in the name of safety to him and others). I think I'd rather put an ear piercing alarm on his bedroom door though.

Anyways, back to it...Remember he had the seizure in the dr's office last time? Well we discussed that and I told him that I had called the pediatrician and told them that he had recommended being seen by a neurologist...but that last time we went in for an EEG they put him on anti-seizure meds and then when the results came back as no seizure activity they looked at us like we had two heads if we mentioned it. They said because no one else had "witnessed" these seizures we must be confusing his autistic behaviors with what we felt were seizures. PLUS what I've read said that the absence seizures cannot be picked up on an EEG.

Well, that's when he let me have it. He said to make the appt and quit "playing neurologist" because I had enough on my plate already. He said they won't tell me I'm full of crap anymore because he is there to back me up and he knows what an absence seizure looks like and if they needed him to write a letter he would. But he wants to see how far I can get with them getting an MRI, CT Scan and EEG done by the 12th of July. I think it'd be easier if he'd just write the letter now....but he wants to follow up anyways. I'm hoping I can get these people to understand that since Harley NEVER sleeps more than 1 1/2 to 2 hours at a time they will have to sedate him, but that I NEED them to use something other than an anti-seizure medication to put him to sleep. I think we may end up being in the hospital at least one overnight to get these done under the right kind of sedation.

It sure explains the anger outbursts out of nowhere. It is hard to notice when he as a seizure that is 10 seconds long at times...and yes it is hard to tell if it's a psychotic behavior or an autistic behavior or a seizure...But there's just no way I can watch him every second of the day to log any 'possible activity'...

Ya know, when he was 2 and diagnosed with autism we were told that it was possible to see seizure activity around the time of puberty--but they also told us to never expect him to be potty trained as well. But then by the time Harley reached the age of 7 he was saying his first words, he was potty trained and although we had seen some seizure activity in him around the age of 3-5, it seemed to have resolved itself. Not only that put people were questioning whether or not his diagnosis was accurate and maybe he should be reevaluated as HFA (high functioning autism)'s so hard to imagine he's turned another 180 in 4 short years...

Anyways, I'm tired and rambling. I made the necessary calls. Just means more time away from summer camp. Some people may think it's an awful thing for me to think of summer camp over testing that "needs" to be done but it's his routine changes that really throw him into hissy fits (most of the time anyways is what I beileve)....And he looks so forward to summer camp...I just hate disappointing him....

G'night....As I get his appts done and his test results I will keep you posted. I think I'll create a tag for posts related to this...maybe call it seizures?

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