This is long, but this will help everyone take seriously henoch schonlein purpura. My daughter was diagnosed with HSP in early May. It took 4 trips to 3 different emergency rooms for her to be diagnosed. The 3rd ER was a children's hospital and they knew what it was in 10 minutes. It started with the rash on May 1st. At first just a few bumps and we thought they were fire ant bites. Then more bumps came and 2 days later she started having severe abdominal pain. We spent many hours and trips to the ER. On May 5th we took her to the children's hospital and they immediately diagnosed and admitted her. We were relieved that finally someone knew what it was. They said it would last for about 4 weeks. They were giving her morphine and toradol for the pain and started her on prednisone. They did some type of test and had about 5 doctors look at it. The GI doctor said it touched of IBS, her pain was mostly in her head, and said she needed to be walking around more. My husband has chrohns disease and we also found out after they diagnosed her that he was misdiagnosed 2 years ago and had hsp himself. He said he knows the pain on both sides and this was not IBS. We explained to him that we knew our daughter better than anyone and this was not in her head. We also told him she had started having severe back pain especially on her spine and told him we had read that in rare cases it can affect the spinal chord. He stripped her of the pain medicines that night anyway and gave her tylenol and motrin. Within 3 hours she was in such severe pain the nurse on duty had to give her 8 milligrams of morphine in an hour and a half. Doctor came in next day and said same thing he did the day before. I guess he knew it all. All the other doctors jumped on board with him. They released her on day 5 and because we threw a fit they gave us 3 days worth of tramadol. They also gave us hyoscyamine and 3 weeks of prednisone. We gave her a combination of tramadol and ibuprofen to get her through the weekend. Luckily our pediatrician gave her more when we went in on Monday. During the next week or so her legs kept on getting weaker and weaker. It finally got so bad we had to borrow a wheel chair. Still in severe pain a week after that doctor visit we took her in for her checkup with the pediatrician again. We told her we noticed a physical tic while at the hospital and the doctors had blown us off. It was getting to be more often. We also told her she could no longer walk. She said this concerned her and she wanted us to go back to the ER. On the way back to the ER she started ticcing like crazy. They admitted her this time for 9 days. They said rather than a tic they thought it was chorea(similar and is a symptom of hsp). On the first morning she woke up not only was she having physical tics she was having vocal tics. Every 30 seconds she would have these uncontrollable physical tics(banging her arms on wheel chair), but also vocal tics like yelling every once in while as well. They sent in a neurologist to see her. She seemed to think she might be making this up(she did not know about the vocal tic yet). If you could have seen this happen you would know there is no way in the world she could be making this up. That weekend my husband and I left for a few hours and Amber had to feed herself. We came back and she had food all over herself(from having the tics while she was eating). The neurologist came in and asked what happened and we told her. Then she heard the vocal tic and asked what that was. We told her that had been happening every now and then since the first morning after she was readmitted. She asked if she could talk to us in the hall. Seeing and hearing this really opened her eyes. She said there is no 10 year old child in the world that would throw food on themselves and it seemed these tics resembled tourettes. Not that it was, but similar. She set up an MRI. After the MRI I told the neurologist that I had done a lot of research on HSP and that in rare cases it can affect the neurological system. She said they did not see any lesions on the MRI so it was not caused by the HSP. They had a psychologist come to talk to her and then they put her on risperdol(an antipsycotic) that could has a horrible list of side effects including tardive dyskenesia which was basically a permanent form of what was already happenning with her tics and clonidine(little side effects). They started her on the clonidine a few days before the risperdol. The chlonidine knocked out the physical tics immediately. I did more research and in one artical I read that one child that has something similar had over 20 MRIs before they finally saw lesions on his brain. When we got her home from this 9 day hospital she was taking the clonidine, risperdol, prednisone(they weaned her off slower than they originally planned because the stomach pain had subsided the 1st day of the second visit and they did not want to risk it coming back), Tramadol(still having horrible back pain)(by the way, we explained about the GI doctor the first visit and if the tics were from something traumatic it was him stripping her of all her pain meds. We told them that he was allowed nowhere near our daughter's room), and now she is taking neurontin because she was having tingling in her legs. We took her off the risperdol because we were worries about the side effects. We started by taking one of her 2 pills a day away and noticed no difference in her tics. When he went to the neurologist it was agreed to wean her off. Here it is the July 22nd and she still has horrible back and leg pain, still in a wheel chair, has to see a pain specialist, neurologist, pediatrician, physical therapist, ear nose and throat doctor(i left that part out)( she now has tinnitus and hears at about the same level a dog does. Airplanes, cars, motorcycles, etc drive her crazy. She has to wear construction head phones from home depot to block out some of the noise), and now in the past 2 or so weeks she has started having seizures(she will be sitting in her wheel chair and just zone out and when she comes back to she does not even realize it happened). We are now seeking a second opinion from another neurologist so they can admit this is all from the hsp rather than trying to put her on an antipsychotic. One thing she has not had is kidney involvement. Knock on wood. She went to the doctor yesterday for urine and blood sample. Point to my story is I've heard some people say there is nothing to worry about with the HSP and most of the time there is not, but do take very seriously because although this is an extreme case, it can happen to you. I as Amber's mother am just obsessed with finding out as much as I can. She is my baby and I cry every day seeing her go through this. 3 mos ago she was a healthy, happy, outgoing kid and now she is in constant pain and in a wheel chair having seizures and vocal tics(the vocal tics have gotten a lot better over I am just hoping when the hsp goes away so does everything else. All this child wants is to go back to school next month, but because of the tics and seizures she will have to have a teacher come to the house. Thank you for listening.
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