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It took approximately 6 years for [B] to get a diagnosis. She started with the rash on her hands and odd behavior such as not being as active as other children and even being reluctant to participate in groups of active children. The doctors thought it was dry skin or maybe eczema and didn't seem to think there was anything wrong with her.
Her case limped along with things coming and going. I wonder now, if and how it would have been treated if it had been diagnosed early on. The result of not treating it led to shortened stature and severe osteopenia (thin bones) from which she will never totally recover. If treated early on would she have been spared the severe debilitation that took place when the disease began to escalate out of control? Researchers believe so.
The JDM was completely missed by both her pediatrician and dermatologist, even when she was to the point of a wheelchair. After her hospitalization we found a new pediatrician and didn't discuss the JDM with him.
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It took 22 months for [our daughter] to be diagnosed. After she was finally diagnosed by the dermatologist, we went to see the rheumy. He took one look at her and told us what she had before he even knew! - When her pediatrician found out, he was surprised. He didn't know what it was. Since then, he's read up on the disease and keeps in contact with her dermatologist and rheumy.
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[My daughter] was dx. within 2 weeks of first symptoms. When I look back now for missed signs or symptoms-I don't see any. I've sat and looked through old photos for signs of a rash on her face, fingers, knees or anywhere. There were also no signs of muscle weakness. Alex was extremely active and strong. She was never tired and excelled at sports-never wanting to be taken out of a soccer game.
Her first symptom was reddened nailbeds. The first nailbed we noticed was on Oct. 31, 2003. Within a week her nailbeds had vasculitic sores. The pediatrician put her on prophalactic antibiotics. Then her eyelids started to swell. I took her to a dermatologist looking for answers. He dx. her immediately and brought a textbook into the room to show us pictures. The next day we saw a rheumatologist. Upon assessment, she did have some weakness. Her labs came back with a CK of 10,000! Things were moving fast and hitting hard. She was admitted that day for IVIG and IV solumedrol. - Most cases seem to start slowly and mildly. But that is not our case. I don't know if that's good or bad or has anything to do with prognosis. It's amazing though, how they are similar, each case is soooo different!
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It took about a year for [our son] to be diagnosed.
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Within 2 days we had a dx, with a scheduled muscle biopsy to confirm. I still can't believe [our doctor] was so on top of it, I thank God for his insight.
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Six months after the first symptoms.
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Our daughter was very active and the first symptom was the rash on her face. Her progression of the disease was fairly rapid thru the course of the next several weeks. We went to our local doctor's office and saw a PA who thought it was hoof and mouth disease. We came back in three days and our regular (ex) Doctor thought it was lupus, did the bloodwork and came back negative. He then wanted to do a biopsy on her face. We resisted and asked for a referral to a dermatologist. He refused, so we went to another Dr. who gave us the referral to a dermatologist immediately. The dermatologist suspected lupus or dermatomyositis and got us into the local Childrens hospital. They diagnosed it right away when they looked at her and started treatment. It was whirlwind but the whole time was approximately 3-4 weeks. We informed the local Dr. what had happened and he wrote us a letter of apology. We don't hold him at fault for not knowing but he should have had the wisdom to refer us on to a specialist rather than resisting our requests.
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It only took about two months from first symptom to diagnosis. [H] had a fairly quick onset because by the time she was diagnosed she had very weak muscles.
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It was about 9 months from the first symptom (rapid eye blinking)
until the diagnosis.