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315

New to group

I was born with Kilppel_Feil Syndrome and have spent my whole life feeling different, it is nice to see that I am not alone. Thanks for being here. Debbie
Debbie s
Oct 17, 2011
#315
 
314

Re: Checklist, anyone?

Yes they are. I love St. Louis Childrens Hospital they are great. we go in June 18 for his neck and back (Dr. Linky) July 28 to see his eye dr. (Dr. Rallo) and
Tammy
Apr 16, 2009
#314
 
313

Re: Checklist, anyone?

In a message dated 4/16/2009 6:30:49 P.M. Eastern Daylight Time, tammy.long35@... writes: Is this group still active? I haven't checked in for awhile
KimBeWavn@...
Apr 16, 2009
#313
 
312

Re: Checklist, anyone?

Are they helping him? I still havent fount anyone in Tennesse familiar with it.. ... From: Tammy Subject: [kfs] Re: Checklist, anyone?
Melinda
Apr 16, 2009
#312
 
311

Re: Checklist, anyone?

... My son goes to St. Louis Childrens Hospital they're familuar w/Klippel feil. they had dignose my son w/that 7 yrs ago.
Tammy
Apr 16, 2009
#311
 
310

Re: Checklist, anyone?

... Is this group still active? I haven't checked in for awhile am going through my KFS groups, deciding if I should end any. Thfank you ...Susan/Raven
Susan
Aug 9, 2008
#310
 
309

Re: Checklist, anyone?

find a genic doc
melinda
Jul 24, 2008
#309
 
308

Re: Ahnuka's story

Wow, what a story!  If this incident did not happen in school, you would have never known! Interesting!  (I hope she continues to do well).  We have been
AnnMarie Allen
Jul 17, 2008
#308
 
307

Ahnuka's story

We had never heard of KFS until 2 weeks ago when my 6-year old daughter was diagnosed. It's been a tough 8 months but we're finally getting some answers. In
Joelle
Jul 17, 2008
#307
 
306

Re: Here is my story on my Genetics Specialist

how did they find out your rib was closing in i have had CT scans etc feels like mine is but they find nothing and it feels like alot of pressure on my left
melinda
Apr 29, 2008
#306
 
305

Re: Here is my story on my Genetics Specialist

San Diego... Wow, how do you guys like it? Welcome to CA, are her doctors in San Diego? Armyfmly@... wrote: She is doing really good. She did not have to
Rosa Ch.
Mar 27, 2008
#305
 
304

Re: Here is my story on my Genetics Specialist

In a message dated 3/27/2008 10:38:06 A.M. Eastern Daylight Time, rosa_libra2001@... writes: Hello KimBeWavn What they did was, they went in an stuck
KimBeWavn@...
Mar 27, 2008
#304
 
303

Re: Here is my story on my Genetics Specialist

She is doing really good. She did not have to wear any brace after surgery. She did have some complications and they had to readmit her and open her back up
Armyfmly@...
Mar 27, 2008
#303
 
302

Re: Here is my story on my Genetics Specialist

Oh wow, How is she? Is she wearing the Torso Brace? I had to, I wore it for like a good 8 months.. I think. How long was she in the Hospital for? How old is
Rosa Ch.
Mar 27, 2008
#302
 
301

Re: Here is my story on my Genetics Specialist

My daughter just had this done 5 months ago. They fused from T-3 all the way down to her pelvis....and they used 2 rods and many screws. Amy In a message
Armyfmly@...
Mar 27, 2008
#301
 
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