RE: zachary

[Guest guest]

Natasha,

My son has repetitive jerking as he's falling asleep and takes Clonazepam

(brand name: Klonopin) for the same. The startling would otherwise keep him

awake. With the meds, he's able to fall and stay asleep. He also takes

Trileptal for seizures, plus other supplements.

It's my understanding that PMG can be very difficult to diagnose on MRI --

the visuals can be interpreted many different ways. Have you tried to be in

touch with Dr. Dobyns? He's in Chicago and is THE guy to talk to about

PMG. I don't know whether or not he accepts IL medicaid, but you might get

involved with his study.

This stuff is just darned hard, isn't it?

Hugs and blessings,

mom to 5

On Jan 21, 2008 7:53 PM, raina_princessa1703

wrote:

> 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

>

>

>

[Guest guest]

I agree that you should try to get him to see an expert...Dr. Dobyns, in PMG.

It does not disappear, it is a description of a neuronal migration disorder

during which the brain is deformed. How it manifests varies child to child...

We learned an enormous amount of information from Dr Dobyns, since no other

neurologist seemed to really understand, and we had several misdiagnosis in the

early years.

is 10 years old now.

You are in the information stage now.... my recommendation, where I made

mistakes, is to apply for every state and federal benefit available...dig and do

research.. financially... the first several years devastated us because we did

not know how much financial assistance there was for .

In many cases, PMG kids can lead down the road to more medical issues, more

surgeries, illnesses, and of course sooooo many doctors.. so don't rely on

private insurance... they will stab you in the back.

We still have over $60,000 in credit card debt from a nightmare couple of

years where none of the equipment got covered etc.

is NOW on Connecticut title 19 insurance, and I have found that with

lots of research you can find help.

The first thing to do is to see Dobyns, or at least get the films there. Get

a solid and understandable diagnosis... that is what they do there.

Understand what may or may not come down the road..... and try not to let it

financially destroy your life.

We are fighting to also get on Social Security benefits, they say my

husband makes too much money... what a joke...after trying to raise a big

family.

Survival just to keep our home. But there are hundreds... probably more...

foundations and grants and programs state by state.

I found a local volunteer advocacy agency, and that was a good start in the

beginning.

God bless you. There are many of us fighting the battle.

Love ... Mom to age 10, bilateral diffuse PMG 80%

raina_princessa1703 wrote:

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

In the middle of a difficulty lies opportunity.

Einstein, Albert

[Guest guest]

When you get your IL medicaid, contact Dr. Dobyn's at the University of Chicago.

888-UCH-0200 He can give you a definite answer about PMG. We worked with Dr.

Kohrman, a ped epileptologist at U of C, regarding actual seizure issues. We

liked both docs and both accept IL medicaid. Actually both see pts out of the

same clinic rooms. Lorene

To: polymicrogyria@...: ttzsnow@...: Tue, 22

Jan 2008 03:53:59 +0000Subject: zachary

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

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