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Member
Posts: 7
Location: Florida | Hi all,
I'm new to the site. My daughter, Layla, is 2years old with severe progressive scoliosis. Her curvature has reached a high of about 120 degrees before finding that she had a tethered spinal cord. The dethering surgery went well and after that and about a year of casting and bracing, gtube placement for weight gain, her curvature is still in high 80s. She also has a genetic disorder - congenital contractural arachnodactyly (similar to marfan's). Ok, trying to make a long story (and questions) short----her ortho has asked both my husband and I to come in for a consult to finally set a date for veptr inplants. I have driven myself crazy looking for similar stories, similar ages, what to expect, before, during, after, etc....any suggestions?
Thanks in advance!!!!!!!!!
Brenda T, mommy to Layla Rayne |
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Member
Posts: 15
| I am sorry that I can't give you any insight as far as Marfans, but maybe I can help find you some stories. If you do a search for Marfan on this board there is plenty of reading. Also have you tried the facebook VEPTR group? How about google...try Marfan and VEPTR stories as a search. Just a few ideas.
Everyones story is different but if you have any questions I am sure someone here will try to find an answer for you. Do you have a date set for surgery yet?
By the way, I love her name! |
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Expert
Posts: 3970
    
Location: Plymouth, Pennsylvania | WELCOME TO THE 'VEPTR BOARD'...FEEL FREE TO SEARCH THE FORUMS...ALOT OF HISTORY HERE...AND I ALSO INVITE YOU TO JOIN US ON 'FACEBOOK' WHERE ALOT OF NEW PARENTS ARE COMING ON EACH WEEKS...ZOE IS A 'VATER/VACTERL' KIDDO, BUT I HAVE HEARD OF MARFANS, AND AM PRETTY SURE WE HAVE SOME IN OUR 'VEPTR COMMUNITY'...ZOE HAS HAD HER VEPTR NOW ALMOST 12 YEARS AND IS AT THE END OF THE PROCESS...AND WE THANK GOD EVERY DAY, FOR IT WAS THE MIRACLE WE NEEDED...LOVE HEARING FROM YOU, AND WOULD LOVE TO HEAR MORE...
GOD BLESS...
http://www.facebook.com/home.php?#!/groups/56052176312/ |
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Member
Posts: 7
Location: Florida | Hi Susan,
I tried both suggestions and have been reading myself to DEATH!!!  So, thank you! No date for surgery, waiting very impatiently this week for a call from the surgery scheduler.
How is Katie doing after the rods and expansions?
Thanks again,
Brenda T.
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Member
Posts: 7
Location: Florida | Hi Jobey 
Thank you so much. If you don't mind, I'd like to read Zoe's story! I don't have a facebook account (am I the only person left???), but have found soooo much info here.
Will check in often,
Brenda T.
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | http://www.childrenshospital.org/clinicalservices/Site1171/Document...
THIS IS AN ARTICLE THEY DID SOME YEARS BACK WITH SOME HISTORY IN IT...SEND ME YOU EMAIL ADDRESS, AND I WILL SEND YOU MORE...GOD BLESS....
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Extreme Veteran
Posts: 599
Location: Southern California | see if you can look up/contact Jacki B of Canada, who's daughter Siobhan is a veptr kiddo with Marfans... I know she is a member of this board and on facebook...
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What to expect????
