New here

[ErinsMum]

Hi,
I am Gail Kimball and am mother to Patrick, 5 (11/28/98), and Erin, 2 (02/02/02).

Erin has Congenital Scoliosis, VATER (Vertebrae and Renal - she only has one kidney), Syndrome, Klippel Feil Syndrome and Torticollis.

We are under the care of Dr. Alvin Crawford at Children's Hospital in Cincinnati. http://www.cincinnatichildrens.org/s...n-crawford.htm

On Feb 3, Erin was cast for the mold for her CTLSO brace w/ left pad on temporal region and righting pad on right lateral neck. and this isn't even for her scoliosis! It is to try and prevent even more facial displacia.

Does anyone have any information on facial displacia? I am really looking for support from other parents going through congenital scoliosis. It has been extremely hard to find info - all I seem to be able to find is infantile - and it isn't the same! Which is why I was suprised to see the congenital under the infantile on this board.

Hope to "meet" some of you soon.

Gail

[Carmell]

Hi Gail,

Welcome to the board. While this is a good place for support for parents and patients with scoliosis, I hope you would consider visiting the Vater Connection message board. You will find families there who understand the VACTERL issues in addition to dealing with scoliosis. You can visit the main page here:

http://www.vaterconnection.org

and the messageboard is found here:

http://www.vaterconnection.org/megabbs

My son, Braydon, is 8yrs old and has VACTERL issues including severe congenital scoliosis. He had fusion surgery at 11 months old to stop the progression of a 75 degree congenital curve. At age 6, he had surgery to implant adjustable titanium rods to keep his chest expanded and his spine stabilized. His outcome from the Titanium Rib Project has been more than we could ever hope for. I know you will be able to find someone, even in your area, to relate to. In the meantime, I hope you find answers you need. I have no experience with facial dysplasia. Good luck and I wish you the best!

Carmell

[ErinsMum]

Thanks

Thank you Carmell,
Actually, I have checked out the VATER connection as well and am on the forums there too. Just not too often. I will check out the board you mentioned though.

I looked at everything you had written for Braydon, and OH MY! And your daughter has scoliosis as well? How common is it to have 2 children in the smae family with it?

Thanks again for the welcome, and I hope to chat with you soon.

[Carmell]

Hi Gail,

My children's scoliosis are not at all related. Braydon's scoliosis is caused by bone malformations that happened during fetal growth, long before birth. Kara's scoliosis is adolescent idiopathic scoliosis - common teenage scoliosis. I guess it was meant to be that I need to learn about all kinds of scoliosis issues... ugh!

I'm glad you posted on the VaterConnection board. I hope you will find others with similar experiences.

Take care and good luck to you!

[ErinsMum]

Thanks again

I realized after I hit send (isn't that always the way?) that the 2 would not be related. I was just surprised that you would have 2 children with 2 different forms of scoliosis.

It does sound like you are "up" on all kinds. Where do you find your information?

I am having a beast of time finding out info on congenital - I must not be looking in the right spots! LOL

Thanks again, and I am sure you will be seeing me between here and VATER.

gail

[lauradee767]

kfs and vater syndromes

hi,
i have both syndromes plus extra things. i have an asymetric face. i had surgery years ago. it didnt fix it but its better. facial surgery isnt easy. i would make sure she can handle it emotionally first. i was 15 when i had mine done. i still have memories i would not go into here.
good luck with whatever you do.
i had one doc be rude to me about my face and she was a peds eye doc
i was diagnosed with kfs last year. too late to save my spine. i hope they come up with a foundation soon so no one else has to deal with the pain of all this
laura

[kerina313]

Hi Gail! I'm Erin mother to Emily who is also a VATER/VACTERL baby.. She was born with cystic kidneys - only one is actually working, congenital scoliosis (9 vertebrae didn't form correctly) and pulumnary artresia/tetrology of fallot (pulmunary artery didn't form correctly) and they did her first heart surgery when she was 8 days old.

Emily is a "normal" little girl at almost 8 months old. We just find that some of the milestones other kids seem to make she has issues with - like crawling. In Oct 2006 (I think) was measured to have a 60 degree curve. We are working with Children's Hospital in DC on doing the VEPTR procedure on her - but they usually don't want to start that surgery until they are closer to 1 years old. That's due to the fact babies tend to double in size in their first year. After that - they still grow - just not as fast.

It's always nice to find other parents going through the same sort of issues.