RE: Stereotypies

[Guest guest]

, I understand that EEG's do not pick up all activity it can be deeper in

the brain it may just pick up the surface. What does the neuro say when you tell

him that you can not get him out of the spell? Have you shown him a video of

this spell? Is it a ped neuro? What is his specialties? Do you have a copy of

the EEG result in your hand? I bet you could get a second opinion with just a

chart review like by Dobyns that knows PMG? Dr Dobyns told us that each med

center treats seizures very different and if we did not like what our Dr was

doing seek others. Cleveland was very aggressive like Dobyns but our Dr seems to

listen and make decisions on my observations. He did not like when she was

having aura type odd neuro activities and he even said that was partial seizures

that he wanted to treat. His specialty is brain malformations but Dr. Dobyns did

not particularly like my med center but our doctor seems to be doing a good

job.My daughter seems so much better cognitive and behavior wise since we tried

a new med. Complex partials are usually treated with Topamax, Trileptal,and

Keppra. But hey I am just a mom that happens to be a nurse and mostly strong

advocate like all of us, Diane

To: polymicrogyria

From: julies_openhearts@...

Date: Mon, 3 Jan 2011 05:25:54 +0000

Subject: Stereotypies

Hello friends! Has anyone out there been told that their child is

experiencing stereotypies? My son went for his second 24 hr EEG a couple weeks

ago, and the results showed that the " spells " he has been experiencing are not

actually seizures, as we had assumed, but they are stereotypies. When I looked

this up on line, I found that they described it as a repetitive movement

disorder, commonly occurring in children with autism or mental retardation.

However, it said that the child can be distracted from a stereotopy while it is

occurring. This just does not seem to click with what he has been experiencing.

What he has seems to fit the description of complex partial seizures much

better, because he does not respond at all if you speak to him while he is in

the middle of one, and I have never been able to distract him to bring him out

of it. (I have tried calling his name, offering a " treat " , making a loud noise,

etc, but he will not respond until he comes out of it on his own.) Now the

doctors are saying that because he is not having actual seizures, the

anti-seizure meds would not do anything for him, so there is nothing they can

do. He has been on Lamictal for 2 years already, but the spells have increased

recently. They told me that stress, anxiety, fatigue, excitement, etc...can all

increase the occurrance of these stereotypies, but even if all stressors were

eliminated, they cannot guarantee that the episodes would stop. I guess I am

just having a hard time believing that they can do NOTHING! Has anyone else

experienced this and if so, what advise do you have? I plan to get a second

opinion, but I thought I would ask all of you first, since you are the experts!

Thank you!

(Mom to Eli, age 6, BFPP)