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Henoch-Schonlein purpura (HSP)

nativef0x
2 Recommendations

My 16 yr. old son was diagnosed a few months ago with HSP Henoch- Schonlein purpura. His 1st symptom was a reddish purple dotted rash from his thighs down to his ankles. The rash went away after about 1 1/2 months, but he has consistently had a large amount of blood in his urine.
Now he is starting with abdominal pain and his urine is very dark. He also has had joint pain for several months before the rash ever developed.
I have been told that this is usually brought on by a virus, but my son had no viruses in the past year that we knew of.
From what I have read about this disease, it usually effects children between the ages of 2 and 11. I also read it effects males more than females.
If anyone knows anything about this disease or if your child has these symtoms, I would like to hear from you.

Explore topics in this discussion:

Motrin Nephritis IgA nephropathy Meningitis Chronic fatigue syndrome Cyclophosphamide Proteinuria Vicodin Morphine Prednisone CellCept Arthritis Leukemia Aspirin Ibuprofen Fever Rashes Cytoxan Pain Hematuria Mental health

35 replies

swimam

Hi I am interested in the person who was diagnosed with chronic fatigue syndrome as well. My history was that I had hsp with nephritis at 10 years old and was really poorly for 2 years, I was given steriods and eventually appeared to recover. At 20 I had glandular fever and then at 30 Chronic fatigue syndrome/ME it has taken nearly 10 years to make an inprovement with the ME to where I am almost better, when shockingly I found I was leaking high levels of protein in jan of this year, since then I am leaking protein and blood and have lots of abdominal pain, but no rash. I have now been told it has been ever since the hsp and that I have iga nephropathy secondary to the hsp and am unsure how it will pan out. I spent 3 days in hoospital after some very severe nosebleeds , it has been a shock as I always thought I had gotten over the hsp but it appears not. I am seeing a nephrologist who is watching and waiting and not yet decided whether to do a kidney biopsy, and awaiting an appoitnment now with an immunologist, but no one seems to really know the answers yet.

camae

Dave I buy my son socks for diabetics. They fit without any binding and are very soft. I buy them in bulk from eBay. I also get him soft sneakers that are maybe 1/2 a size too big and also loosen the ties so they don't fit tightly.

Dave_F

Hi, im 19 and was diagnosed with HSP around 2 months ago, i am unable to work as i cant wear socks at anytime as it seems to swell my ankles and feet up, i was just wondering if this is the same for everyone else? thanks.

camae

"" The last time he was in the hospital, we had an emergency room dr. tell us that HSP is not a life time disease and that kids just get it once and then it is over. That was during his third episode! ""

We've had two doctors say the same thing and act like what Mik was going through couldn't be happening. Even while he was in the hospital getting Dilaudid every three hours! Covered with purpura and showing internal bleeding on the CT scan. I can only chalk it up to ignorance, lack of experience and disinterest on their part. It did make me feel angry though. The only Dr. we've seen that took Mik's condition very seriously was an older Dr he saw in the ER he had seen several instances in his career. I believe that HSP is a very under-researched disease, perhaps because it doesn't always follow the same course with each individual.

TELSHYROSE

My son was diagnosed with HSP when he was two, just a month before his third birthday. He had broken out in a horrible rash all over his body, he was crying from I was not sure what; he had a fever, and several other things going on with him. Me and my husband took him to the ER and they ran several tests on him, and lucky for us the ER doctor had just a month before read an article in a medical magazine about HSP. They ran a few more tests and he was diagnosed. I came home that night only to do major research on it because we were not given a lot of information, just if things get worse bring him back. The next day he turned purple, and was unable to get out of bed. He spent almost two days laying in bed and we could not touch him because he just cried in pain. It took over a week for him to get better. Once he was better we were told that this he will always have HSP, but probably would never have another outbreak of it. Four months later we were back at the hospital because he had all of the systems again. Since the second outbreak, we have noticed that when he gets sick he just does not get a little sick. When he gets a cold it seems to go straight for his lungs, and he has the worse breathing problems. We have been to the emergency room because of his breathing problems and he has been admitted several times. The last time he was in the hospital, we had an emergency room dr. tell us that HSP is not a life time disease and that kids just get it once and then it is over. That was during his third episode! Now when my son gets sick we watch him very close, monitor his breathing, and check for rashes, it seems when ever he gets sick that is the best chance for the HSP to emerge itself.

camae

Hi Allilu, My son had been bitten by a deer tick 12 months before he got sick. The Doctors felt certain that there was no connection. Probably because of the time that elapsed between the two events.

louis845

hi, i had this disease when i was five quite badly i couldnt walk and the rash was all up my legs and my face was swollen, earlier this year 10 years later i had it again but it was just the rash joints didnt hurt and i wasnt swollen at all since then i hav had it on and off with the spots just a couple on my feet every month i feel no pain or akes its just a couple of spots im due to go doctors again tommoro should i be worried my mum doesnt think so.

Allilu

Hi there, I've been reading all this stories, and more afraid now than before, my 2 1/2 years old daughter has been diagnosed with HSP, but she hasn't have any infection for about maybe 5 months ago, but she got a tick bite almost a month ago, since then she got very irritable, and this past she started having dificulties walking and purple and red spot on her legs they also started swelling and is so painful that she won't even let me touch her knees or feet, even her small body hurt when I try to held her up. I know the studies shown that the cause of HSP are unknown but I am wonder any of you got a tick bite?, and start having these symptoms. please let me.
My husband found a dog a month ago, and she was sick, her peep had blood, and the smell was very strong.
P.D. I am sorry but English is not my first language, so for that I apoligize for any misspelling words.

lilmissme

hi
i had HSP 11 years old am 18 now..
i had big purple blotches and rash on my feet to ankles i had it bad..
i had to go 4 scans and check ups every month as my kidneys now have kidney failure i suffer alot with my kidneys now am getting older the pain is unreal i cant walk, an now am in an out of hospital because of what this did to me :( its horrible x

charlie1z

Hi, I am in my forties and was diagnosed with HSP in February, i have now been told that i also have chronic fatigue syndrome, after reading some of your posts i does sound like a lot of other people have CFS but nobody has been diagnosed. i agree with all the other symptoms that have been posted joint pain, tiredness etc. i was told that i should start feeling better in a couple of years, is anybody taking anything for the joint pain that they could recommend to me

thanks

camae

My son Mik is in his 33 month of HSP without any remission. I get so discouraged with the differences of opinion we get from seeing so many Dr's. The only one I've really trusted was one ER Dr an elderly gentleman who told us he had personally treated many cases and that we could hope for remission but that it would never completely be cured and leave Mik's body. With him the biggest complications are constant Purpura, constant Arthritic pain in his joints and swelling and three times of serious Bowel involvement that required a total of a months hospitalization.

I think he's been lucky that his Kidney tests show usually between a +2 or 3 and that's OK. I've read of other peoples Dr's trying different treatments like even IVIg but his Dr has never tried anything but pain meds and now High Blood meds he's developed High Blood Pressure and he's only 24. He needs better care than he's getting now and I'm praying that his SS comes through in Aug. The problem is that he doesn't look that bad on paper just looking at test results but that doesn't tell the whole story it doesn't tell what it's like to be swollen and bleeding and in pain constantly. Right now he's bleeding so badly in his groin he can only get out of bed to use the bathroom and shower. Later in the day when I use cotton puffs to clean the area again and spray a soothing spray on the area I'm wiping away blood. It's so discouraging and I get depressed.

Susdeol

I'm going thru HSP with my 3 yr old :( she is being seen at stanford (Lucile Packard Childrens hospital). My daughter never complained about abdominal pain, but did get the bruise like lesions from her knees down. She has had swelling of both knees and ankles--- in only 1 week. My question... What CRP (protein level) are we talking about for kidney involvement to occur?

I have faith in the Lord and I know he will help my daughter and us through this! Please reply to my question. Thanks

Susdeol

I'm going thru HSP with my 3 yr old :( she is being seen at stanford (Lucile Packard Childrens hospital). My daughter never complained about abdominal pain, but did get the bruise like lesions from her knees down. She has had swelling of both knees and ankles--- in only 1 week. My question... What CRP (protein level) are we talking about for kidney involvement to occur?

I have faith in the Lord and I know he will help my daughter and us through this! Please reply to my question. Thanks

chicken

Just to update you on my progress with hsp. I have now had a biopsy and it came back that i had inflamation of the kidneys. My specialist was brilliant he had me in within 2 weeks when he recieved the letter from my gp. I went in on the thursday and monday morning he was on the phone to me to tell me i needed to see him the following morning asap. He was very very good with me and explained that i do have hsp and that this will take at least 12 months to be free of. He put me on steriods and some other medication to supress the kidneys. also calci tablets he has asked me to take another blood test in 10 days and then another one 2 days before i see him on 8th april 2009.This had really stressed me out and made me feel really unwell untill i went to see my kidney specialist. I now feel a lot better that something is being done for me. All this started in october 2008 and with the help and support of my doctors and specialists and there quick action i feel totaly relieved . Its going to be a long haul i know keep your chins up hsp sufferers and make sure your doctors listen and you are not waiting to long to get treated. best wishes chicken

chicken

I really hope this has not come back good luck to you all.

chicken

Hi Bluejay. I must say that after reading your write up it is the only one that has made me feel a little better. It has been 6 weeks since i was told i had hsp. I have been to my doctors every week for bloods and urine checks. My bloods so far have all come back normal but the last 2 weeks i have had small amounts of blood and proteine in my urine. My doctors have said that they are ok with this at the moment and continue to monitor me on a regular basis. My legs were coverd in these dreadful rashes which then started to fade away but then i got them on my arms and torso and backside and tops of legs. They have now started to come back on my lower limbs and also on my hands i feel so worried about this but my doctor said that this can happen and it may take several months to go away. I do have a few pains with my limbs at the moment. I am back at my doctors tomorrow for the blood test results taken last wednesday. Thank you for your comments as when i read others i feel i am at deaths door and this is depressing me so much.

Wire

Hi
I'm 49 and have suffered with HSP for about 12 yrs. now.
There are a number of things that can trigger HSP besides a virus. a very good sight for information is Emedicine. They have a number of articles on HSP.

KylieKu

I have a 7 year old daughter who was diagnosed with HSP 3.5 weeks ago after having tonsilitis. She woke one morning and couldn't walk. Had four wee spots on her legs and her feet started to swell. Was told by doctor it was a virus, then took to A&E in afternoon to be told from them too that it was a virus. Next day her feet started swelling even more and going purple. She still couldn't walk so I made another doctors appt for 3.30pm. At 2pm I noticed spots all over her bottom. Took her straight to doctor thinking it may be meningitis. They sent me into the hospital and she was then told it looked like HSP. Had blood tests and was put on drip that night with antibitotics going through the drip (in case it was meningitis as something hadn't quite made sense on the blood test results). Also she had a course of steriods that night. Next morning paediatrican confirmed it was HSP and we were sent home with steroids, and told to give Nurofen. By the way by this stage her hands had swollen too and she couldn't walk or feed herself. I left thinking her spots on legs (which she now had a few) were bad only to discover two days later they were nothing compared to what she then came up with. Big spots on tops of legs. Looked terrible. Then was told to up her steroid intake and give codeine as well for the pain. Her little sister got tummy bug last weekend and my 7 year old with HSP caught it off her so back into hospital we went! She was losing heaps of blood out of bottom as blood vessels around her bowels had given way with her vomitting. They had to stablise her with oxygen, get fluids immediately put into her as she was finding it hard to stay awake. Spent two nights in hospital. Was put on stronger steriods this time to try and fight this HSP. Went and saw paediatrican a few days later for urine tests etc. All looked good, looked like spots clearing up until we got home and they started flaring up again! Her hands quite often have been swelling again (mainly late afternoon) and legs getting sore. Tonight I have had to give Nurofen and Ibroprofen as her legs and just covered with new and old spots and she was in a lot of pain. This is so frustrating! It scares me to think we have only put up with 3.5 weeks of this and by reading all the other stories it can go on for years! She has only been to school 3 half days over the 3.5 weeks. The next appointment was going to be made 4-6weeks but now it has flared up again I may ring and get this done sooner. Does anyone have any similar stories or do you think my paediatrican is doing all he can which I am doubting. I am in a smaller town and my friends has told me she would be phoning Starship in Auckland for a 2nd opinion. The only other thing I think they may do is put her on steriods again - I have been told this is the only other thing they can do for my daughter. Do you know of anything else that may help her? Her kidneys have so far been fine (although no tests been done but no blood in urine when we last went to appt). Look forward to hearing from you
Worried Mum
xxx

akwildflower

my son is almost 16 he has has had HSP for 6 months now all of his urine work has been good so far,but he has to take his steriods every month and as soon as he goes off them he can have a relapse.
when he is feeling better he still plays football,i have some doctors who say this is ok
and some not
i am so tired of seeing him tired
he has had a relapse every month is this normal??
thanks sonya

camae

Sylvia do you mind if I pass your daughters email onto my son Mik. I'm hoping it might help them both if they can share their experiences.

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