6yr.Old with ARCIMalformation/Help Me

September 29, 1999

Hi, my name is Robynne and I am new to this group, but feel so thankful

I have found it and to know there are people out there that can offer

advise and help me.

I am a mother of 3 children. My second child was born with all the

surtures closed in his skull at birth. He had two operations, one at 8

weeks and the other at 7 months. At one year of age the neorologist

told me my son had this thing called an Arnold Chairi I, but told me

never to worry about it, except I should not let my son play in any

contact sports. My son has never been very coordinated and is really

effected by his fine motor skills. Well, anyway we moved here to

Arizona from Florida and I took in for his annual MRI and well,

guess what the neorsurgeon comes out and says this malformation is

getting worse and also explained to us that this problem has a big

effect on 's coordiantion, fine motor, occacional dooling,

balance, etc. He also explain that would be having pressure and

pain at the back of his neck, but unable to tell us.The other problem

we are faced with is because of his surtures in the skull being closed,

the head has not been growing enough for the brain to grow. In my

son's case the brain is growing upward and then pushing down on the

Arnold Chairi I.

Can Anyone relate to me? I just would like some help and advise. Does

anyone have a child out there with similar problems, if so after the

operation did it help with the above problems. Do people with this get

better? My child has alot of difficulty holding a pen or pencil. He

has great difficulty writing? Will this get better after the operation.

Hope to hear from someone very soon.

Thank you and God Bless all of you.

Sincerely, Robynne

Sorry for all my spelling errors, I just wanted to get this out ASAP.

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