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Myositis Message Board

Myositis Board Index
Board Index > Myositis | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

My daughter was diagnosed with JD at the age of 6. We were absolutely devastated. After a horrible experience with one doctor, we found another doctor whom I credit with saving our daughter's life. He was patient and kind and thorough in his examination of my daughter, and he was the one who finally gave us the JD diagnosis. He said he wanted to start her on steroids immediately. I said, "oh, no. Not steroids." He said, "A lot of people are afraid of steroids because of the side effects, but make no doubt, steroids save lives. If you do not start your daughter on steroids now you are absolutely looking at a wheelchair and an early demise." Talk about shaking someone up. My daughter started on 30mg of prednisone a day and had to add in carafate to her daily regime for the resulting stomach pains. She developed cushing's syndrome as a result of the steroids (the "moon face") and was swollen. But her strength increased within 2 weeks of starting the drug. Constant observation and blood work was a part of her life for two years. Fortunately, the steroid worked (if they hadn't, the next step would have been methatrexate), and my daughter went into remission. She was tapered off of the meds 2 years after starting them and has been well since. She was released from the care of her rheumatologist (Dr. Stephen George - the most wonderful doctor in the world) 2 years after that. He said to call if she showed any symptoms in the future. I spoke with him recently regarding a slow-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." It should be known that my daughter is now 13 and fully active in sports and in life and is (thank God) not showing any signs of relapse. My heart goes out to all of the other parents going through this right now. I can't tell you how many days and nights were spent in tears watching what my daughter was going through and wishing I could take it all away from her. I pray for each and every one of you and for your children. Please know that there is hope out there. And for the parent whose doctors said that the child's complaining of being in pain every day was "emotional" and not related to the JD, I say, you know your child better than anyone. My daughter was in pain ever single day until the steroids started working. The pain associated with the disease is real. Good luck to all and God Bless.

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