Hello and thanks for the welcome into the group

[Guest guest]

My son was diagnosed Sept.99 with either microgyria

or pachygyria the neurologist refers to it only as pachygyria . He also has

Partial complex seizures. The first seizure he had that I noticed was when he

was about 2 years old I took him to the pediatrician for it but was told that

it was caused from a fever (a very low grade fever) and sent on my way. It

was about this time that was noticed to be very delayed. I had noticed

it from the time he was about 6 months old, but was always assured that boys

are just slower than girls.

He didn't walk till he was about 2 1/2 or 3 years old and

really didn't talk till he was about 4 or 5 then it was very limited and hard

to understand He did receive speech therapy in preschool and it did help. I

started taking him to a special group of doctors when he was about 3 every

year and the only diagnoses they could come up with was cereable palsey so

from the time he was 3 until the time he was 14 we thought he had CP. I read

everything I could get my hands on about CP. He fit only very few symptoms of

CP and I was very confused and started looking into other illnesses and found

that he fits many of the symptoms of autism (very good meomery,likes things

to be the same, in his own world a lot) he has a half brother that has been

diagnosed with autism I still think that he has some autism but the doctors

don't.

Back to the seizures when he started elementary school one of

his teachers noticed him have a seizure. We got a appt with a neurologist and

had an EEG or EKG (my daughter has heart problems so I always get these mixed

up) and It showed that was having almost constant seizures they are

really hard to see by looking at him but they were there. So we started him

on medication and boy did we go thru a lot of them he had bad side effects on

some and some just didn't work. We finally did find one that worked for years

(I can't remember the name of it, it was a generic little blue pill) but

was getting headaches a lot and nothing was working for them. He had

about 1 a week I would tell the docs about these headaches every visit but

doc didn't think it to serious (He wasn't the one that had to listen to the

crying !!!!!)

Finally the doc ordered a MRI because I was sure that

had a brain tumor or something. This is how we learned that he had pachygyria

so in a way it was a relieve to know it wasn't cancer!!!!

I really never put two and two together until his seizure

started getting worse and we had to up his dose of medication. Well, the

pharmicudical company did not make a generic of the higher dose. So we put

him on the new pill and he did really well and then the strangest thing

happened I ordered his meds and the pharmacy was out of them and could not

get any for a while! I still had some of the generics and gave him some and

within an hour he had a severe headache. Finally an answer to the headaches.

is in the 8th grade now he goes to regular

middle school he goes to regular history, home ec and computer class with

modifications, and does math and English in special ed. he is mentally at

about the ages between 4 and 8 on most things. His pachygyria is in his

frontal lobes and thats where our common sense is located. He is very literal

he takes things exactly how they are said which is sometimes scary and

sometimes funny. He loves to play playstation and Nintendo 64. He still

carries around his Ernie doll that I have to make him leave in the car when

we go shopping. He has taught me so many things that I never could have

learned from anywhere else.

I have been thru a lot with both my children my daughter has

severe Problems her inside are backwards, she was born with only one lung and

has a heart problem so bad that they sent her home from the hospital to die

when she was a year old. I was 16 years old and 6 months pregnant with

.. She proved the doctors wrong though. She is 17 years old and has done

really well the doctors don't know how to explain it.But now say they

expected her to live a pretty normal life.

Well that pretty much our story in a nutshell !!!!!!!!

[Guest guest]

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Hi wonderfolks- thanks for sharing part of your lives with us. I find it

helpful to know how other people are doing- welcome.