Scleroderma Information » Scleroderma » My Daughter
Question:
No she still has the reflux, RA. She still has some dark spots of skin on her hips. She is still on a multitude on medications but, she is physically much better than she was. She has a pretty good outlook on everything tho she still has her days. Today is one, the weather is VERY damp and she is in a lot of pain today. For such a young person she amazes me still! — Listen To The Angels The Quackenbosch/Quackenbush Family Page http://freepages.genealogy.rootsweb.com/~ghosthunter/main.html The Anneke Jans & Everardus Bogardus Descendants Association Page http://freepages.genealogy.rootsweb.com/~ghosthunter/Anneke/page0.htm "Amelia Yaussy" <ayau…@forcemail.com> wrote in message
news:3ECE2278.4020003@forcemail.com… – Hide quoted text — Show quoted text -> Fantastic to hear - does this mean she has no more reflux or Raynaud’s > or is she still being treated for those symptoms? MTX is a strong > treatment, but is certainly useful against RA if not in some cases of > scleroderma. I can’t imagine getting scleroderma and RA at 14. She has > a long way to go to live with this stuff. > Cindy Winkler wrote: > > Hi Everyone > > I have been lurking for about a week now and decided to post. > > My daughter has/had diffuse scleroderma. She also has rheumatoid arthritis, > > reflux and raynauds. The kicker here is she was 14 years old when she was > > diagnosed and she is now 16 yeas old. When she was first diagnosed, her > > father and I said "Sclerowhat????" After an explanation of this disease the > > Dr. then told us she had a 50-50 chance because she has/had the adult form > > of Scleroderma. Hard words for parents to hear but, true. Her doctor is > > Dr. Seibold at Robert Wood Johnson Medical school in New Jersey. He > > explained the treatment options and we decided of the "controversial" > > approach. Methotrexate shots. She had her last shot in October 2002. At > > her last visit with Dr. Seibold he said she was basically in remission! > > Before this all started she was a very healthy young girl and very active. > > Her weight was 115 lbs. At her lowest point she weighed 87 lbs and new > > she’s at 110. > > I just want to reinforce that there is hope and not to give up. I know > > Methotrexate is not the magic shot, so to speak, it was combination of > > everything. Not everyone agreed with our decision, but we had to try it. > > We were losing her right before our eyes. I know the remission doesn’t last > > forever but, we’re enjoying every moment of it now! > > Thanks for listening, > > Cindy > > Listen To The Angels
Response:
Fantastic to hear - does this mean she has no more reflux or Raynaud’s or is she still being treated for those symptoms? MTX is a strong treatment, but is certainly useful against RA if not in some cases of scleroderma. I can’t imagine getting scleroderma and RA at 14. She has a long way to go to live with this stuff. – Hide quoted text — Show quoted text -Cindy Winkler wrote: > Hi Everyone > I have been lurking for about a week now and decided to post. > My daughter has/had diffuse scleroderma. She also has rheumatoid arthritis, > reflux and raynauds. The kicker here is she was 14 years old when she was > diagnosed and she is now 16 yeas old. When she was first diagnosed, her > father and I said "Sclerowhat????" After an explanation of this disease the > Dr. then told us she had a 50-50 chance because she has/had the adult form > of Scleroderma. Hard words for parents to hear but, true. Her doctor is > Dr. Seibold at Robert Wood Johnson Medical school in New Jersey. He > explained the treatment options and we decided of the "controversial" > approach. Methotrexate shots. She had her last shot in October 2002. At > her last visit with Dr. Seibold he said she was basically in remission! > Before this all started she was a very healthy young girl and very active. > Her weight was 115 lbs. At her lowest point she weighed 87 lbs and new > she’s at 110. > I just want to reinforce that there is hope and not to give up. I know > Methotrexate is not the magic shot, so to speak, it was combination of > everything. Not everyone agreed with our decision, but we had to try it. > We were losing her right before our eyes. I know the remission doesn’t last > forever but, we’re enjoying every moment of it now! > Thanks for listening, > Cindy > Listen To The Angels
Response:
Hi Everyone I have been lurking for about a week now and decided to post. My daughter has/had diffuse scleroderma. She also has rheumatoid arthritis, reflux and raynauds. The kicker here is she was 14 years old when she was diagnosed and she is now 16 yeas old. When she was first diagnosed, her father and I said "Sclerowhat????" After an explanation of this disease the Dr. then told us she had a 50-50 chance because she has/had the adult form of Scleroderma. Hard words for parents to hear but, true. Her doctor is Dr. Seibold at Robert Wood Johnson Medical school in New Jersey. He explained the treatment options and we decided of the "controversial" approach. Methotrexate shots. She had her last shot in October 2002. At her last visit with Dr. Seibold he said she was basically in remission! Before this all started she was a very healthy young girl and very active. Her weight was 115 lbs. At her lowest point she weighed 87 lbs and new she’s at 110. I just want to reinforce that there is hope and not to give up. I know Methotrexate is not the magic shot, so to speak, it was combination of everything. Not everyone agreed with our decision, but we had to try it. We were losing her right before our eyes. I know the remission doesn’t last forever but, we’re enjoying every moment of it now! Thanks for listening, Cindy Listen To The Angels
Response:
What a great kid. I hope things continue to improve for her. – Hide quoted text — Show quoted text -Cindy Winkler wrote: > No she still has the reflux, RA. She still has some dark spots of skin on > her hips. She is still on a multitude on medications but, she is physically > much better than she was. She has a pretty good outlook on everything tho > she still has her days. Today is one, the weather is VERY damp and she is > in a lot of pain today. For such a young person she amazes me still!
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