9 year old Son with symptoms

March 3, 2001

Dear Group,

Hello, again. I was reading all the articles on whether or not chiari

is hereditary. Well I have been wondering this myself. I have chiari I

with SM. Before I was diagnosed, my 9 year old son was having strange

symptoms. First, all the way through school he was very behind with his

motor skills (fine & gross) and anything that dealt with eye hand

coordination. Then as the years went by he would complain of headaches.

I thought it was strange for a boy his age complaining of headaches so

often. So we took him to the eye doctor. The eye doctor noticed that his

eye muscles were very weak and he had a hard time staying focused on

objects, words, etc. The doctor commented that he found his eye movement

to be very strange. Keep in mind, I had no idea that I had chiari. I

never even heard of it until 5 months later, when I was diagnosed. Later

on that year, my son was still struggling in school. So the school

psych. performed an IQ test on my son. Another strange occurrence. There

was a huge gap between his verbal score and performance score. Verbal

scores were very average for his age, but performance scores were very

low. We decided to hold him back a year in school. This has been very

good for him. But he still has problems with concentrating and motor

skills. One year later, he has been complaining of more headaches. So

his doctor scheduled him an MRI. The radiologist did not find chiari. I

was not satisfied (coming from a small town hospital). We scheduled him

with a neurologist at Children's hospital in Pittsburgh, PA. The

neurologist is convinced that he just has migraines and not chiari. He

also feels that my son may have Attention Deficit Disorder. What I am

wondering and I don't know if anyone can help me, but am I wrong for

being so cautious. Can he maybe still have chiari and it's not developed

yet or can't be seen yet on an MRI. We all know that chiari deals with

our cerebellum and the cerebellum controls our motor skills. My other

son who is 5 does not show any symptoms. I am currently pregnant and the

ultrasound tech. performed many scans on my baby's brain. She is

convinced that my baby is fine as well. This is a relief to me. But for

my older son, I don't want him to be misdiagnosed like I was for so many

years. If anyone has any advice, I would be very grateful. Thank You!!

Sincerely, Robyn in PA

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