newly diagnosed and scared

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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newly diagnosed and scared

Postby rabbit » Sun Feb 17, 2008 7:32 pm

:( My 17month old daughter was just diagnosed with a chiari one malformation about three days ago and i don't know enough about this and i am scared. I plead to anyone out there who is willing to take the time to talk to me and help me understand this a little better..... :(
rabbit
 
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Joined: Sun Feb 17, 2008 7:22 pm

Postby lalaswihart » Sun Feb 17, 2008 8:01 pm

Hi I am so sorry, I remember how I felt when I frist found out, But you are in a good place and there are so many here who can help. :D

All 4 of my kiddo's have Chiari, The first things is to get the Best Doctor, one that only does Chiari is best. we use Dr B at The Chiari Institute in New York, even though we live in Tx. We tried other doctors locally but they did not know enough about Chiari and my daughter had 2 surgeries she that did not help.

Anyways I will attach a link to there websute they have great videos that explain chiari and help inform you, Dr B is the one one the video's.
They really helped me make an informed choice.
I will say a pray for your sweet litttle one and if you need to talk feel free to contact me by PM and i will give you my email. God Bless

http://www.northshorelij.com/body.cfm?ID=6407
http://www.northshorelij.com/body.cfm?i ... inkID=6407
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
lalaswihart
 
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Postby brianfsmom » Sun Feb 17, 2008 8:20 pm

Hi Rabbit,

welcome, sorry you had to find us. First, don't panic. (Easy for me to say, I lost about ten pounds and walked around in a daze for two months when I first found out, and my son was 9!) But many children are diagnosed and never need surgery. Many others have surgery and go on with their lives as if they never went through anything.

You don't say what the circumstances were that led you to the diagnosis. Whatever the case, I'm sure you will find there are others who have walked the path before you.

Get a few opinions before you decide how you are going to proceed. We got four. My son just 'celebrated' his three year anniversary of his decompression surgery. Although at first it is shocking and horrible, often it turns out to be something you just have to live with, and you get used to it. Also, you're lucky to have found out now. My son must have walked around with all of this for years, before we found it, almost by accident.

Good luck!
brianfsmom
 
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Welcome

Postby Sara » Mon Feb 18, 2008 9:07 am

Welcome to ASAP. If you haven't already, please request a free information packet from ASAP. http://www.asap.org/infopacket.html

What symptoms is your child having? Why did she need the MRI? A chiari malformation does not always cause problems. Symptoms are more important than the films. What state do you live in? The first thing you need to do is find a good pediatric neurosurgeon. A children's hospital is a good place to start. This article talks about the specific problems found in young children: http://www.asap.org/articles/102-1.html

Hang in there. Many people have Chiari and do not require surgery and have little or no symptoms. Please tell us more about your child so we can help.

Sara
Hope and Holly's mom
Sara
Site Admin
 
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