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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
 

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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
 

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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
 

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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
 

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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
 

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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
 

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309

Re: Checklist, anyone? find a genic doc

melinda
Jul 24, 2008
#309
 

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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
 

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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
 

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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
 

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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
 

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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
 

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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
 

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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
 

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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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