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Pages: 1Showing 1 - 16 of 16 for juvenille dermatomyositis. (0.010 seconds)

... Hi, I had dermatomyositis at age 18 which isn't considered the adult form which occurs in 40 to 50 year olds more often. Actually I had no idea what I had was dermatomyositis until today I heard on the radio about a singer who had it, and I was like "That is what I had. ... (15 replies)
... healing break my daughter had in her wrist to see if any of her experience with dermatomyositis or the steroids might be affecting her healing, and he said "no, her history should not be related to this. ... (15 replies)
... My 10 year old daughter was diagnosed with Dermatomyositis in September 2007. We noticed her weakness in August, we thought she was just being lazy. ... (15 replies)

... I don't have a child with Dermatomyositis but I was one. ... (15 replies)
... Anyone with a child that has dermatomyositis? (15 replies)
... Hi, I am an adult with DM who has tried IVIG (blood product). I can only tell you from my own experiences that I have not experienced any major side effects aside from a bit of nausea and headaches immediately after the treatment but usually lasts no more than a day. I have tried almost every medication and IVIG seems to work best for me however it seems that my rash and... (15 replies)
... Hi My Daughter Was Diagnosed With Jdm Last November And I Am So Glad To Hear Other People Are And Have Gone Through The Same As Us As We Really Have Felt So Alone In Our Quest For Information And Help For Our 7 Year Old Daughter. Thankfully Though 10 Months On Our Daughter Is Flying In That She Is Doing All She Wants To Do. She Really Is A Star Patient , She Does Get Very... (15 replies)
... :angel:Our son was diagnosed with this not quite a year ago. We are having a really rough time with this. He is now six and he cannot get into remission. He has been on 20ml of predisone for almost the full year with pulse steroids once a month. He is also doing the IVIG treatments once a month and we were one of the very few that have undergone the rutuximine treatments. He... (15 replies)
... Hi serinity I saw my daughter's doc the other day and she said that she rung her specialist and had a talk to him, he told her he does not think it is Derma........ but thinks that she does have a muscle prob, but does not know what. I think this guy is nuts, how can it be that all her test show Derma and he is still saying no, i'm at my wits end. The test from Aussie has... (15 replies)
... I totally understand about the steroids and their side effects and your daughter not wanting to take them. In my daughters case the benefits outweighed the risks.I feel if she hadnt started the steroids she would of gotten worse because with no treatment the musles deteriorate more and more.After a couple of weeks of being on the steroids my daughters cpk went down and she was... (15 replies)
... Hi, I guess it is mainly because of the side affects, if they had started treating her when she was only 13 it might have been different. Now she has recently turned 16 and has done some research, she said to me she could not stand to take steroid, because of what they do. She is scared too which is understandable. That's why i asked about the IV blood product treatment. ... (15 replies)
... kiwigirl Can I ask why your daughter will not take steroids?Derma needs to be treated or it will continue to get worse. Sending good wishes your way:angel: (15 replies)
... Hi Serinity:wave: Our problem is that she is still not on any Meds. I really don;t know how one can treat a sick child like this. :mad: Because it is so rare, the Docs in NZ don't know what to do. she has had all the test that show it is Derma, but still nothing. She recently had a biopsy which showed the cells, but still that was not good enough, they have now sent it... (15 replies)
... kiwi girl can you tell me what the doctors are treating her with?when my daughter was diagnosed they treated her with solumedrol iv every other day and then started her on oral prednisone. (15 replies)
... Hi Serinity I have a Daughter who became very ill in April last year, she was rushed to the Hosiptal with a CK of 16,000 and a rash and unlarged liver and in alot of pain in the legs and back. They told us it was the above. She has been pushed from pillow the post ever since. In New Zealand there are only 5 other kids with this, so the Specialists don't know what to do. ... (15 replies)
... My daughter was diagnosed in August of 1996 with JDM.She has been in remission for 6 years.She is now 13.She was 4 at diagnosis.It changed our life , there were a lot of ups and downs.Like you we were devastated everything changed and my poor helpless daughter this wasnt her fault or ours.I kept asking myself why why her.I will never forget how helpless I felt.At that time her... (15 replies)

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