10 year old with extreme case of HSP

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.

By camae
Posted July 23, 2008 at 3:45 am
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I'm so sorry for your family. This can be something awful (HSP) I've cared for my son for the last two years with it. I know how you feel I get so tired of people acting like it's nothing. My son has no Insurance so the quality of care he's getting right now isn't the best. His pain has traveled for the last several months it's been in his shoulders the worst some days he can't raise his arms without crying out. All his Dr will give him is Vicodin and he adds Aleve to that as well. after so long depression, anxiety and anger have really set in so now he's seeing a Psychiatrist as well. The fight for assistance and Insurance has been hard on him, he doesn't understand why our system works like it does.

I've done a lot of reading myself and your daughters case seems very rare, usually with children it takes a much milder form.

By camerons_mum
Posted September 12, 2008 at 10:07 am
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I couldnt help but cry when i read your story and i am so sorry you and your family have had to deal with this. both of my sons have both had hsp my eldest just had swelling of joints ect but that cleared up very quickly how ever cameron was not so lucky he has had it for nearly a year now, he has contstant blood and protein in his urine and i am so scared it will only get worse for his kidneys. he has spent the last year in and out of hospital i lost count of how many time he has hemeraged he seems to be in a lot of pain with his tummy most of the time he spent mounts on and off nill by mouth even having a long line for 4 weeks put in his arm and pushed up in to ne of the main arterys by his heart to feed him that way to give his guts a rest he has always suffered intersuseptions although luckerly they have corrected them selfs. when he was first diagnosed i was told like many that it is very rare and he will be fine in a matter of weeks, he has been so brave through out a part of me feels like i am letting him down because i just dont know how to cope with this and he has taken it all in his stride not once complaining even when he was being starved he has lost so much weight and i have trouble slepping i am always worried about the what ifs. as much as i hate the idea of other people suffering this ilness it really helps when there is some one else who has been through it to talk to and you are the only person i have seen who has also been hit twice in the same family.... thankyou for listening suex

By camae
Posted September 15, 2008 at 6:49 am
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I can't imagine what it would be like to experience this twice in my own family. The two years I've been caring for my son has been hard enough. I really wish there were more interest in studying this disease from an adult perspective and a long term study that wasn't just a collected retrospective.

I myself am sick to death of so many Dr's who've had no experience with it other than textbooks and want to wave it away as if it's inconsequential. My son and I have had several run ins with Dr's who want to brush him away. Then there's the opposite the groups that come in when he's in the hospital or the clinic who want to look at him and take photo's like he's a sideshow. We always seem to run into both extremes. I just want one Dr who cares.

By allvic
Posted January 30, 2009 at 9:34 am
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HI,

I would like to say that I hope that everything is going well for your daughter.

I am 25, and currently doing research on HSP because I had done blood tests and urine test, and now I need to do extensive testing on the kidney.

Anyways, the whole point of this is, even though there is not much you can for HSP just words of comfort means alot.

I have been unlucky in the past to have been exposed to HSP at the age of 6. It had actually not lasted that long. I don't remember it that much.

However, I had another reoccurence of HSP when I was 11. That I could remember. It was the worst. Much of your daugther's experiences reflect mine. I remember being on a wheel chair, hospitals, and at the end of it all, learning how to walk again. It was an awful experience. Since then, I have high anxiety over doctors. High blood pressure, and worst kidney impairment. We'll see how impaired they are in the weeks to come.

14 years later, have gone fast, I've lived a healthy life. Remember those years , I remember sitting beside my mom crying, and her supporting me. It meant so much for her to be there. The pain was overwelming, there is only so much you can do. I do recall, the wheelchair was hard for me to get over. And also being in a hospital with kids on kidney dialysis. I am not really a religious person, but I remember praying not to be those kids.

The whole point of this, it will pass. It always does for those suffering HSP. Unfortunately, it leaves other with roblems and awful memories. It's hard on the parents and the child. I hope that you are daughter is better now.

By sinay
Posted March 2, 2009 at 11:12 pm
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Hello All,
I was diagnosed with HSP in 1982. I was on vacation with my familty in canada and it struck me. I started as a small hive on my left leg. Withing 24 hours i was covered with redish purple blotches. The further down my body the bigger the blotches became. Some of them were the size of large oranges. I have expercianced some extreme pain in my left but this was the worst. I developed intense cramps in my legs that took away my ability to walk. I could not keep anything down. I had unimaginable intenintal flu sickenss.
We went to a hopital in canada and they told us to go back to the united states. My parents and family drove me straight to a hospital in NE ohio ( that was home) while i screamed in pain and vomited for 15 hours. I spent the entire summer in the hospital. It was rare so there were interns and doctors there 24/7. Out the of the room and down the hall. It took them a good week to diagnose me. They told my parents I had everything from lukemia to cancer. I had track marks on my arm like i was a junk. I contracted it again when I was 22.
I have been plagued with vascualar problems in my legs. I had none of the contributing factors and had both of my legs stripped. I have also been plagued with venus statis ulcers. My legs are prone to extreme charlie horses and cramping. No matter how many fluids I drink or what precautions I take. I was told that is in common in India( an Indian Dr diagnosed me) and that something irriated me and caused this. I feel all your pain this is something horrible .

By camae
Posted March 3, 2009 at 11:40 am
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Sinay your experience sounds very similar to my sons, with the exception that he was diagnosed quickly. He became ill very suddenly and violently at the age of 21. He is now 23 soon to be 24 and still very ill. He was most recently hospitalized in January for a week with severe Intestinal involvement . Since then he has been almost constantly bedridden with extreme pain and cramping in his legs. It's been almost 2&1/2 years and he hasn't yet gone into any remission. He has constant Petichiea and Purpura along with Protein in his urine and all the Rheumatic Arthritis pains. This desease has taken over our lives and he is no longer the same person as he was before it began.

By Dawn22
Posted March 4, 2009 at 2:49 pm
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I am so sorry to hear about the difficulty your daughter is having with her HSP. My daughter is 16, and 2 months ago she was an active teen enjoying friends, school theatre. She developed HSP 1-19-09. It started with the vasculitis rash, and diagnosed with a biopsy shortly after. She has gone down hill ever since. She developed the "RARE" complication of kidney involvement. She recently had a kidney biopsy, and scarring was starting. So they put her on Cellcept 500 mg twice daily, 80 mg prednisone, prevacid, lisinopril. The Cellcept is a very scarry drug with very scarry side effects. I feel like I am giving her poison every day. And Cry most nights in private. I feel your frustration, and your fears. Educating ourselves is all we can do. And challenge the doctors for answers if need be. We have a wonderful team of doctors, but there is still that fear. I wish the best of luck for you entire family, and prayers passed your way.
Dawn

By jason88
Posted June 18, 2009 at 2:33 am
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You are all very caring parents as are mine, god bless you all. I am 21 with HSP for about 14 months now. I originally had it with the full blown symptoms when I was 14. I cannot remember how long it lasted when I was 14 but it was a while. I was hospitalized with severe abdominal pain which they gave me pain killers for in the hospital. I was given prednisone for the year following that. It took an entire year until the purpura rash disappeared. I was healthy since. Now at 21 I only really had the rash and some abdominal pain, not as severe as my first occurrence. Just two days ago I been getting severe pain in my leg which was almost unbearable. I now think after reading others posts that it is related to HSP.

If there is anyone suffering from HSP I highly recommend intravenous immunoglobulin. I had one of the top doctors recommend it and I used it with amazing results. The only downside is it lasts only about a month, and its expensive (thank god for insurance). I think it can help everyone suffering from HSP to keep the symptoms to a minimum. I discontinued it recently because I seemed to figure out the reason for my HSP.

For me I noticed HSP is brought on when I eat certain foods. Dairy, eggs, meat all cause me to break out with a purpura rash. I have since cut all those foods and my symptoms are cut down by about 70%.. See if diet helps, it does take time to see since the rash lasts a while. Worth a try. I hope I helped someone, I know how terrible this is. Hopefully it goes away soon for me.

Welcome to Inspire!

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