Please help my 8 year old daughter

[Txmom4]

My daughter is 8 years old and until April 30 of this year she was a healthy very active child who got headaches frequently. She started running a high fever that night and talking "out of her head" we took her in to Texas childrens er in Houston and found out that she has crouzons syndrome and 15mm chiari. After 19 days in the hospital and her coding twice on us we were released, only to continue to go back. She is having these absence seizure lik episodes and she wakes up screaming at night with sharp pains. The new symptom is her left eye swelling and vision loss in that eye. We love our neurosurgeon and our pediatrician, but this symptom is not "normal"
has anyone had this symptom and what tests do we need to figure it out? I cannot watch her live in pain and there are no support groups around here to help out. Any info is greatly appreciated.
God Bless

[rod44]

Hi and welcome, There is not much I can add just to echo what Jackie and Selma have said... finding a doctor who is experienced in treating CM is very important.

Ray

[selmaS]

Hi and welcome to the chiari forum.

From what I understand of crouzons syndrome ur DD's  chiari is due to this other condition.
As is her vision impairment.Surgery appears to be the best route and I did find an organization in TX....Home page: http://www.thearc.org
Children's Craniofacial Association
13140 Coit Road
Suite 517
Dallas TX 75240
Phone #: [phone]
800 #: 800-535-3643
e-mail: ***@****
Home page: http://www.ccakids.com

U may also want to start a group here for others in the same situation.....as this condition is very rare...chiari is said to be rare, but with my own experience and meeting sooooooo many with it, I find the condition is not rare, but finding a dr that understands it is.

http://www.medhelp.org/health_pages/MedHelp/MedHelp---Groups/show/1021?cid=88

If there is ne way we can help, please let us know...and I encourage u to continue to use this forum to express ur concerns and questions.

We are happy to have u join us here, but not that ur DD is suffering and is the cause for u to seek us out.

"selma"

[jacmurphy]

Hi.
I'm so sorry your daughter is going through all this. I can only imagine what you are feeling as I think my son's symptoms are relatively mild.. Until January this year I had a perfectly healthy child and now he's got Epilepsy and Chiari 1. My son is 14.
I really can't give you any advice except what I hear here all the time. Do get an opinion from a Chiari specialist. I'm sure you NS and Pediatrican wouldn't mind.
The only symptoms your daughter has that we can relate to is the Absence seizures and the headaches. With my son I've been trying to seperate the Epilepsy and the Chiari and try to see which symptoms are associated with which condition as they only treat the Epilepsy.
I will say that lately i've been getting answers.. but only because i've been asking questions. (something I never would have done in the past)
Knowledge is power.. so do research both of your daughter's conditions.
I'm sorry I can't be of help to you. But my prayers are with you both.
God Bless.
Jackie.