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Does anyone out there have any experience with this horrible issue? She has this in her upper inside thigh. Is there anyone out there that specializes in this so rare form of Scleroderma? Please let us know for our daily prayers are in hopes of finding some advise. Thank you so much......
I'm sorry to hear your daughter has been diagnosed with a form of scleroderma. It is very rare in children. My son was diagnosed at 11 years old with systemic scleroderma. We see a pediatric rheumatologist. Although we live in a large metropolitan area (Dallas, TX) we travel to Houston to see a doctor who has actually treated pediatric scleroderma patients. Perhaps a start would be to ask your regular pediatrician to help you locate a rheumatologist in your state who specializes in children, and who has seen treated children with this disease. It is a frustrating process. There are many medications which will help your daughter. It's just a matter of finding the doctor who is willing to work with you and her. If I can answer any other questions, please let me know! Good luck and best wishes.
Melissa
Our 7 year old was recently diagnosed with linear morphea but has had sympoms since 5. He also has it on the inside of his thigh, but also down his leg, on his foot and toe as well as on stomach and back. It's only on 1 side of his body which is apparently common. He started on steroid cream for 2 months 2x a day on the effected areas and that really worked to lesson the hard skin. He is now doing UVB light therapy 3x a week to try and stop the disease from spreading further. We are hopeful that this will be successful. If it is not, the dermatologist and rheum. said he'll start Methotrexate and solumethedol.
If your daughter has linear morphea i've researched and been told that many times it will "burn out" on it's own after 3-5 years. it is not the type of scleraderma that can potentially go into organs. It can go into bone and muscle if it's over her joints.
We live near SF and go to UCSF where there are pediatric derm and rheum who really seem to know what they are talking about. I think finding a doctor who you have confidence in is one of the most important aspects of treatment. The fact that your child's doctor diagnosed it so early is a good sign that she knows about treatments. Our pediatrician looked at our son's changing skin for 2 years and kept changing her mind about what it was, and never diagnosed it. Lastly, be warely of finding info on the internet! Reading posts where children are terribly sick are not going to help you stay positive and collect RELEVANT information for your child.
Hi Dan;
I posted some info the other day but have been having computer problems so I guess it did not go through.
This type of SD is very often associated with Lyme disease.Lyme can be spread by ticks and mosquitoes and is everywhere.Please ask your doctor to have the test done by Igenex as most tests are not very accurate.If you need help read the info on Roadback's bulletin board by using the "search" at the top of the page www.rbfbb.org.If you need more help,join up and ask MAZ for a list of Lyme literate doctors in your area.
Hello Dan,
So sorry to hear about your daughter. This was very frightening for me as well. My daughter has morphea on her thigh too. She is 12. She had the UV1 light therapy over a year ago, and has had much improvement. She also used Mometasone which is a topical cream. It has burned out within 18 months.
Like you, I was very scared after researching Morphea. Being that it is localized scleroderma, it will just stay on the skin. Like AR stated, unless it goes over a joint or on the head, it won't go internally. The doctors need to stress this to patients, because Scleroderma is actually a much different disease. Many people have Morphea and don't know it. It never gets treated, and burns out on its own.
Hope this was helpful for you. Take AR's advise and stay away from the internet. I wish I had done that.
Have you looked on the Scleroderma website? There are people who might be able to help you find someone that specializes in it. I know that there is information to be found on the site. If you have problems keep asking questions. Also I feel that if I am not getting the care I need that I will look for a doc that will work to help me...........................don't be afraid to ask for a second oppinion. Good luck and give your little one a hug for me!
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