A new direction

>> Thursday, November 29, 2012

Bug's seizures have been lessened as of late. He is still having them though, with some large ones here and there, but for the most part, they are short. His most frequent, and new seizures, are very quick tonic where he looks up and his head throws back and his arms goes stiff. They last about 5 seconds. Next to impossible to video, darn it.

He is home sick today. He slept for almost 13 hours and once he ate a little breakfast, went back to sleep for another hour. So, I kept him home. He has been playing quietly, and not being very active. Every so often he comes over to me and cuddles up. It's adorable. So maybe, I kept him home for me, more than for him. :)

With what we found out about Lamictal and Phenytoin I researched more, and we got lucky. I sent a friend request to the woman that talked about Lamictal and she added me to an Autism Group. I was stunned with the threads in the group. So high level, and almost EVERY one of them mentioned one of three doctors that developed the FRa Test. These women...they will be the ones to really help Bug. I found a lot of good, practical information from other parents who have children that are FRa positive and have CFD. Very exciting.

It doesn't seem that it should be this difficult to find a Doctor in Utah that has experience with these but it is. And really, why? There are an amazing amount of children in Utah and a fair share have an Autism diagnosis...so where are the specialists? Are they in hiding or is this another typical Utah thing? We just don't talk about it? Either way, it's very frustrating.

I never thought I would have to become an expert on Autism, but it seems, that in order to get the treatment he needs, I need to walk the walk and talk the talk and heaven forbid they should NOT know anything about Epilepsy. THAT could get ugly.

I have spoken with Autism Specialists in California in the past and that left a very unpleasant taste in my mouth. The two struck me as greedy and arrogant. One, wanted 750$ just to talk to him and then each appointment would be a minimum of 500$ and he did not deal with Insurance so any of the testing he wanted to do would be above and beyond the appointment cost. He recommended that we meet every month, maybe twice a month, just to begin.

The second, wanted me to 'understand' that there was no miracle cure and that Jenny McCarthy was an idiot. THIS offended me to no end. Idiot or not, her son improved and if that means she sacrificed a chicken every day for 30 days, I don't care. She saw results. You can not argue with that. Placebo or not...if it works...shut up.

So, our new direction is Autism. Should be interesting. Wish us luck.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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