zachary

[Guest guest]

Hello all my son zach who is three was diagnosed with the perisylvian

polymicrogyria when he was just a week old due to insurance reasons

we never got to follow up with that dr. About a yr ago he started

having febrile seizures, we had numerous eeg and mri done nothing

came up he had the normal brain of a 3 yr old. We excepted it at that

and was told that we just had to watch him for signs of infection, he

had febrile seizures every 3 mths for about a yr. Then the last week

in December he had his first afebrile seizure. We went to the

hospital they told us to come back in 2 weeks for eeg. Morning of the

eeg he woke up 2 hrs prior and had a tonic clonic seizure... he went

to sleep as soon as it was over so i just let him considering he had

an appt in 2hrs.. On the drive to the appt he had another one i flew

to the hospital and we got him all hooked up on the eeg but it showed

no signs of seizure activity the very next morning he had another one

so we went back to the hospital the put him on topamax 15mg capsules

once a day. next morning he had a seizure in the hospital bed while

eating. They wanted to hook him up to a 24 hr eeg but he wouldnt hold

still long enough to even put heart monitors on him so now they want

to test for adhd. back to the point,they did an mri and said no tumor

but there is a white mass on the back of his head, they put zachy on

the topamax twice a day, and gave him a one time dose of fosphenytoin

it seemed to be working in the hospital but now that we are home i

dont know if its just because he is sleep but he has at least 40

episodes of either jerking or absence seizures in a day mostly when

he is waking up or going to sleep. Doing research nowhere did i find

that polymicrogyria just disappears. Im so thankful that he just has

the seizures, he does drool alot and has some problems chewing but

other than that he does pretty good. What i dont understand is how

the doctors in one hospital can see the polymicrogyria and the ones

in this hospital dont? What is this white mass and why dont they know

what it is? Right now im in the process of trying to find a doc that

will accept the illinois medical card. I would have like to tried to

see the nuerologists that had seen him at stl childrens but hes not

there anymore.. I feel so bad for zachy because he has to deal with

this. Then i feel guilty when im sitting in the hospital with and i

have to have a sitter for my zoey who is one.. So far she is

perfectly healthy and i pray that she doesnt get this to because this

is the hardest thing i have ever had to do watch my baby go thru

this. sorry its so long thanks natasha