Scleroderma Information » Scleroderma » Linear in 7 year old
Question:
Jan Silbermann wrote: > My daughter has had a ‘rash’ om her face for four months. > It was originally treated as some weird form of ecxzema. > Now the doctors are saying that there is a 50/50 > chance that it is a linear morphea. We are heartsick. > We are worried that it could be disfiguring (ie. > if one side of her face grows and the other > doesn’t) she has already expressed sadness that > her skin doesn’t look like everyone elses. > How the heck am I supposed to get through this? > Please pray she has a fungal infection. > Jan
Jan, My name is Chad and I too have Morphea. I am 28 years old and have had it for about 2 years. It took me quit a while but I have finally found a group of doctors who are willing to treat my problem. When I was first diagnosed, the doc I was going to said don’t worry and that there was nothing that could be done about it. I did not accept that and kept looking for another doc. I was living in Houston at the time and it was not long before I found a dermatologist that had some answers for me. He put me on a drug called Plaquenil and I have been on it for a little over a year now. It had stopped the progerssion of the disease until very recently. It has started to migrate at a slow rate acros my back. Since then I have moved to Birmingham AL and I have continued to see a doc that is here in town. He is a student of the doc from Houston and has done an excellent job of trying to control the disease. He is currently trying to set me up with a new type of UV light treatment the has been very sucessful in Europe. The only problem is that the bulbs are regulated by the FDA and he is having difficuly getting then in the states. Oh well, I guess I will have to wait. I am still on the Plaquenil and also applying a Hormone tape to the affected areas. From all of the information that I have been given from my docs. there is a good side to having Morphea. At lest it is not something worse. They tell me that it will not turn into something worse. The doc that I was going to in Houston was head of the derm. dept at University of Texas and has treated this stuff for 30 years. He told me that in all this time he has never seen Morphea progress into anything more severe. That is comforting for me. They say that it eventually runs it course and, to use his words, just "fizzles out". I truly hope this is the case. Well, I have taken enough of your time. If you would like to contact me please feel free. Take care. Chad Boudreaux Chad…@bellsout.net
Response:
In article <19980224204301.PAA19…@ladder02.news.aol.com>, CFRC <c…@aol.com> wrote: >>Now the doctors are saying that there is a 50/50 chance that it is a linear >morphea. We are heartsick. How the heck am I supposed to get through this? >>Jan >Jan, >It is the hardest thing for a parent to think that your child has health >problems. So many emotions and thoughts race through our heads.
The reason I feel like I can’t handel this is because I have already had one child with a very serious health problem and now I have to go through it again? Thanks for your words of wisdom. I’m trying not to lose it. Jan
Response:
Please make sure she gets to see a specialist in Rheumatology ASAP if you have not. Jan Silbermann wrote in message <6cu525$dl…@rs10.tcs.tulane.edu>… >My daughter has had a ‘rash’ om her face for four months.
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Response:
I know the feeling and it must have been a big shock. But compared to lot of other serious conditions morphea is not a completely terrible condition. Most of the time Morphea usually progresses for a while and then for some strange reason stops progressing. But it does leave some damage behind. My daughter who is now 6 has been diagnosed with linear scleroderma/linear morhpea etc. It is on her left side of her face and starts from under her left eye. In fact she has difficulty closing her left eyelid while she is asleep. We have seen close to a hundred doctors from residents to some of the top dermatologists and rheumatologists in Pittsburgh and Philadelpha. If the disease is still progressing I think there are medicines like Plaquenil available. Check with your Rheumatologists. I am not a doctor. I know it is tough. But hang in there. The doctors have told us that corrective plastic surgery is available once she grow older. But it is no use doing anything until she becomes an adult. You are right, if in fact she does have morphea, the normal side of her face would look normal and the affected side may look a little depressed. As far as scars, you can go to the best department stores cosmetic section and get something called "COVER MARK" that is available and can be blended to match the skin of your daughter. This is really great and masks the scar. I think you should be able to use it now. We use it for our daughter when we go out. If people ask uncomfortable questions about your daughter’s conditions you should politely tell them you will talk to them about it later. Whether to see a Rheumatologist or dermatologist is a toss up. I think there are both good Reheumatologists and dermatologists. Some of the experimental type treatments are a prescription drug called Calcitriol (I heard it is a potent form of Vitamin D) and the other treatment is PUVA (Psoralen, ultra violet treatment). We tried Calcitriol and did not have much success. We are really afraid of exposing our daughters face to ultra violet radiation. For now we are not doing anything and we periodically see a dermatologist, opthalmologist and a rheumatologist. Please keep in touch in case you have any questions or concerns Thanks Ramana Kanumalla
Response:
>Now the doctors are saying that there is a 50/50 chance that it is a linear
morphea. We are heartsick. How the heck am I supposed to get through this? >Jan
Jan, It is the hardest thing for a parent to think that your child has health problems. So many emotions and thoughts race through our heads. My best advice is to ask lots and lots of questions of your daughter’s health care providers and take things one step at a time. Try not to anticipate the worst of anything. Just be there to support your daughter as she is going through this process of diagnosis. Everyone looks different anyway. Every person is unique. What matters most is what is inside. Show her how to hold her head high and how to handle those awkward questions she may have to field from peers. If you need us, we are here for you and your daughter. RP
Response:
My daughter has had a ‘rash’ om her face for four months. It was originally treated as some weird form of ecxzema. Now the doctors are saying that there is a 50/50 chance that it is a linear morphea. We are heartsick. We are worried that it could be disfiguring (ie. if one side of her face grows and the other doesn’t) she has already expressed sadness that her skin doesn’t look like everyone elses. How the heck am I supposed to get through this? Please pray she has a fungal infection. Jan
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