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I am excited to find this group. I am in the U.S. I have been looking for others to discuss HSP with since I had never heard of it before this past November. I have been wondering if my daughter developed it because of a medication she took or if it just happened. I suppose I may never know.
My daughter was suffering from daily headaches so the doctor had her keep a headache journal for a month. He prescribed Cyproheptad & said to take one when she had a bad headache. She had developed a cold & fever. She took one Cyproheptad about two days into her cold because her head was pounding. She took another the next day. Four days later she started her first round of HSP, Thanksgiving weekend of 2014, she was 12 at the time.
That Saturday, she started telling me that her knees & elbows hurt. I told her she was way to young to have aches & pains already & assumed she had played too hard that day. Later that night, she showed me what appeared to be hives. I gave her a Benedryl & hoped it cleared up. Sunday afternoon her right leg & ankle started swelling. The swelling progressed & it seemed the swelling was moving up her leg & she couldn't walk. I took her to the ER. They thought she had an allergic reaction to something & prescribed Prednisone. The next day her face was swollen, her leg swelling was down but her arm was swollen. I took her to our doctor & her said she had Erythema Multiforme. A few days later, her rash began changing into the bruising (which really freaked me out) so I took her back to the doctor. He took one look at her & said he thought she had HSP. She took a urine & blood test to confirm it. He had not seen a case in about 7 years.
She continued to develop more spots, & had severe stomach & joint pain. There were many days that she could barely walk. Our doctor recommended that she alternate Tylenol & Morin every two hours to elevate the pain. It didn't totally eliminate her pain but it definitely helped a lot. She spent a lot of time in our La-Z-Boy with her legs up, sipping water. She lost her appetite but occasionally would eat. She had many days that she was in pain & discouraged. She would cry, so I would cry with her. I felt helpless.
She missed 2 1/2 weeks of school & then Christmas break started. By the time she had to go back to school she was almost completely better. She still had a few spots & occasional pain. We continued her urine, & sometimes blood tests, until everything was clear a couple weeks later.
February 16th she developed another bad head cold, sore throat, & was very tired. I didn't think anything of it. Six days later she came to me & said "Mom, don't freak out." She showed me a rash on her legs. She said her legs felt tight & she was having knee pain. I took her to the doctor the next day & told him I thought she had HSP again. He did a urine test & said it definitely looked like she did & ordered a blood test to confirm it. Her rash never fully developed & her pain was very low compared to last time. She hasn't missed any school.
We saw the doctor today & she still has slightly elevated proteins & small amount of blood in her urine. Her tests have been coming back this way for the past six weeks. It just seems to hanging on. We go back in a month. The doctor wants to make sure it fully goes away.
What's strange to me is that the first time she developed it, she didn't have one headache the entire time until it went away. This time, the headaches never stopped.
I'm wondering if anyone else had taken any new medicines before they developed HSP? Also, for those that have had it multiple times, has it always been a milder case after the first time & how many times have you had it?
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