Wednesday, March 11, 2009

Testing and therapy

Testing for Aidan is only in the beginning stages. He's had an EEG, neurological evaluation, and speech evaluation. He is going in for an MRI on the 20th. They have also ordered a lead poisoning test, along with sensory and psychological evaluations.
At first, this doctor said he thought Aidan was having seizures, and that he was somewhere between Asperger's syndrome and PDD-NOS. But with this doctor having more information about our environment and new test results, diagnosis has been put on hold until the remaining tests have come back.
The EEG results shows Aidan's seizures are happening in the part of the brain that effects language. And Aidan goes back and forth with having days of much confusion and difficulty communicating because of so many seizures, to having really great days where his communication is perfect because of few or no seizures.
Aidan's symptoms include super hyperactivity, seizures, obsession with order, extreme ability to memorize and regression in language skills.
He still enjoys being with others, has great eye contact and interaction, and is very compassionate and aware of others emotions and feelings. So other than the tantrums and regression with communication, we had no reason to suspect autism. I know plenty of people obsessed with order. Aidan's seizures were so hard for me to pick up on because they are what's called Partial Seizures. He is conscious the whole time, and they only last for a minute or two, sometimes even for only seconds.
I told the doctor he kept blinking his eyes and ducking his head as if he was having trouble seeing. That pediatrician said he thought it was a nervous tic and referred us to the current doctor who immediately suspected it wasn't a tic, but seizures.
For several months, I just knew something was wrong and couldn't get anyone to take me seriously.

So at this point, all we know for sure is Aidan is having seizures that affect his ability to communicate properly.

Testing has been ordered for Jacen too. Jacen's language regressed at the same time as Aidan's. Other things indicate there is a really good chance all of this was caused by lead poisoning. Which is why blood work has been ordered for Jace as well. An EEG has been ordered, but is being held off until next month because of all Aidan's tests... I can only handle so much at once. Full evaluations are ordered for Jace too.
And he's going to Shriner's for his legs.

So both boys will be in developmental preschool by summer, and could possibly have to be put through chelation treatment to remove the toxins.
The problems were ignored by doctors for a long enough time, there's a good chance the damage done to Aidan and Jacen is permanent.

When I know more, I will post it.

I'm really glad, now, that I got us tickets for a Day Out With Thomas. The boys will need a fun break!



2 comments:

Erin said...

Thanks for sharing the information. We are, of course, thinking about you guys as you are trying to get a handle on what is happening with your boys. That is so frustrating as a mother to know something is wrong and trying to get the attention that it deserves. I am glad you've at least got people listening to you now. Keep us posted.

Buzybugs pixie.blogspot.com said...

Seriously, can you possibly have a million and one things going on. I love Shriners, my brother has been up there and they are amazing. I hope you post more information, it's great your sharing such personal information that is SO important, it shows how much we need to be aware of as parents, were the only advocates for our kids. kudos to you, your a great mom..