My 11 year old son was just diagnosed with Henoch-Schonlein Purpura

DiDi,

It's stressful, do not worry about being frantic. We live in the Midwest in the US and our doctors had no idea what it was. They thought it was trauma for almost 3 days! Ugh! Then when the rash started, the Trauma doctor thought it was Staff infection! Thank God for the amazing doctor who had only been at our hospital for a year. She had come from Children's Mercy and had seen HSP before! The rash doesn't "blanch" (or turn white when you push on it) she said "It's vascular"!!!

I will be sending prayers your way!!! We go back to the doctor next week. I think we may be looking at a whole other issue with our daughter. Possibly an Autism Spectrum.. Maybe it is just a coinsedence that she hasn't been the same child since we got out of the hospital with HSP. Maybe it was so traumatizing for her to be in the hospital she is post tramatic stress or something. Something is wrong, that is for sure. She excelled in the learning disability testing we got for her. We did this testing due to her biological parents being on drugs at conception, through pregnancy and at delivery. There was cocain and oxycotton in my baby's system when she was born. We adopted her when she was one year old. She is highly intellegent and MAD all at the same time. Her brain goes way faster than mine does, I can tell you that! ; )

See, I'm in Ireland. Talk about not knowing anything! I'm back to square one again, this time with fever. I couldnt imagine going through this with a baby. This may not have anything to do with your daughters change, more likely the drugs. I have great respect for you. Anyway all i know is if this keeps up I might move back to Massachusetts . Then i wonder if they would be any better. Keep the faith i guess.

Hi, we've just got back from the hospital today where my 5 year old has been diagnosed with HSP. I have been told to manage any pain that he may have with Children's paracetomol & children's nurofen (taking instruction from the dosage on the bottles), not to give him the nurofen if he complains of tummy pain as this can irritate the stomach.

We have been told that this is not contagious, he can carry on with sports etc...

We have been told to test his urine every morning for the next seven days for blood & protein and to contact the hospital if either are indicated, thereafter we need to continue checking his urine twice a week for a further 11 weeks.

During the next three months they have told us that there is a possibility that the spots/symptoms (tummy ache/aching joints/swollen joints) can occur at any point.

Long term; they have told us that there is a chance of kidney infection which is why they need us to monitor his urine so they can take action immediately if necessary.

I was so terrified this morning when I saw my son's bruises/spots, all sorts sprang into my mind, although apart from the spots and a swollen knee, there were no other problems.

End of a very tiring day for us all, good luck to all out there dealing with this. God Bless x x

Ambarry - how awful for you all. It is very scary when you see the spots/bruises and then the swollen joints. I still check my son all the time and am so worried it will come back. The worst was waking up every morning not knowing which part of his body would be swollen. Sometimes it was his ear, his eye, his willy (!!) - very

scary & distressing. Hope he recovers soon.

Ambarry- If your son doesnt feel up to the sports do not send him. My son was pulled from all contact sports for 3 months if not longer. He often feels good and wants to go outside and play but it sets him back the next day. He doesnt have the rash anylonger and the stomach aches have started to go away. We also live in the midwest and the cold is not helping. He is continuing to swell off and on. Did anyone notice that your child was more at risk for catching everything? My son came home with the flu last week and now has a cold. he is normally a healthy child before this all started in Sept. Good luck everyone, my thoughts are with you all.

What a nightmare, we've been back & forth to the hospital so many times with all this...

Alex has now started to get the rash on his arms & yesterday even had swelling on his forehead. Although the doctors are reassuring, they admit that they are baffled too. Many of them were very surprised by the head swelling and have never known this previously.

However, thankfully Alex is still the same little boy he was before HSP, other than the hobbling around on an evening like an aged person.

It sure is a nightmare. My sons seems to have recovered but those 3 weeks were terrible. Don't send your

son to school or for any activities until he is well. He is in pain and he won't recover until he rests. All you can do is give him painkillers. Maybe explore anti flam to keep the swelling down? Not sure about that though.

Hope he gets well soon.

Hi all. Sorry this is long but may give u further info?

I am going back 14 years now but had a very bad experience with HSP.

My son, only 4 yrs old at the time developed HSP and was ill for almost a year, literally. There are different stages to this illness, which i am sure u have been advised by now, not all children continue to the next stage and the next etc but it is a terrible illness to deal with. We went to hell and back with my sons problems and at 4 yrs old was horrendous to watch.

He started with the rash, which came on over 2 hours, covering majority of his limbs. They actually looked like bruises everywhere. His temp was 101 so straight upto the hospital a/e we went.

My son was actually hospitalised for 2 weeks solid and we were in and out of hospital for the following 3 months also. Obviously he was only in his nursery year at school but ended up missing almost all of his first year. I found the most distressing part was the fact that nobody can tell you the cause, there is no cure, there is no treatment other than pain relief, its a sit and wait and watch as to how far the illness is going, as in will he get the next stage also or not etc etc. My son had a bad time and i have listed the various things he sufferred with below and in order:

Rash/brusing - high temp.

Temp continues, headaches.

Bruising develops around torso also plus above continues.

Temp, headaches, violent sickness - for approx 3 days.

Swelling and pain in all joints in arms and legs.

Pain in body increased to the point we could not even hug him, he also was either so weak or in so much pain had to be carried accross the hospital ward to the toilet he could not walk. I was advised this was a temporary rheumatoid arthritis?

Temp, headaches and sickness improve so we took him home however the pain and loss of use continued for at least another month. He was constantly tired and would fall asleep many times during the day, everyday.

Swelling and pain remained but gained strength back etc to enable him to walk again .

Pain in limbs continued for approx 3/4 more weeks.

2 weeks later the whole thing started again, right from the top!!!

I was also advised that the final stage of this illness is the kidney damage and this is the only stage my son didnt get thank god. This can result in kidney failiure in very rare occasions. Anyway we finally got there with him but i can honestly say it took around a year in all. In addition to that he had to continue with the urine checks etc for a further 12 months after this. My son had so much pain killing meds over the period of a year that the medicine damaged his teeth so badly, at the age of 7 my son had every tooth removed in hospital due to this.

He did not have any further reoccurence and i was told that there would be no long term damage which i have always worried about.

I am not so sure this is fact, although obviously i have no medical knowledge as such but over the years my son who is now 18 has had a stupid amount of broken bones, wrist x 2, leg x 2 and a finger. Although he is very sports crazy. This is the thing that makes me wonder about the long term effects, he is currently in complete agony with his legs and knees. It is so bad that i have just requested gp for a private referral to see a consultant - like now. BUT - GP suspects rheumatoid arthritis. ?????????

The good news is he has been diagnosed the bad news is its more likely that (dr mum) is your best option 2 find the answers ,keep a diary of flare ups ,when the rash appears a cold cloth on the affected area helps sooth the burning sensation and slightly calms the rash ,sore stomachs and loss of appetite is sometimes a sign it may have went into the stomach ,push your gp to check his urine and may possibly need a kidney biopsy ,although some dr,s are great unfortunately some are iggnorant 2 hsp ,i have been told that hsp doesnt come back in adult hood ,it is def not hereditary and doesnt appear on certain places on the body ,im 33 and it keeps coming back i have had it on these places that was told wouldnt also my son came out in hsp i took a pic of it and presented it to the dr ,he confimed it was hsp then i told him it was infact a picture of my son and his attitude dramatically changed and said it was unlikely that it was hsp ?? This ignorance outraged me and ever since then i mostly research as much info as possible and then go 2 my gp or hospital and tell them what 2 tests i want done ,i am no dr but so far i have been right ,i hope any info i have helps out take care x

Hello. My name is Michael, I had HSP back in mid February. I had the rash all over my lower body and my arms as well. I was first diagnosed with Strep Throat. They gave me a medicine Clindamycin and the strep was gone within 36 hours but I noticed severe joint pain when going to work that night and then noticed spots running on the visible parts of my lower legs and my arms near my hands. I discontinued the medicine right away. We identified it initially because my sister had hsp 4 years ago then confirmed it when a trip to the er on day 4 of the hsp. Doctors don't know much on it because it's a rare disease. All I could find from online forums and doctors was that the only thing you could do is wait for the disease to run it's course and take pain killers when needed. I was in so much pain during it they gave me norco to numb it. My co-worker recommended something for the rash that I couldn't find anywhere else in anyone's recommendations. It doesn't rid you of the disease but it worked for me on turning down the redness and getting rid of most of the sores. Vitamin E oil applied directally on the skin and I took the Vitamin E pills as well for good measure. I got rid of the worst of the spots within 2-3 weeks of getting it seeing strong improvment in the skin tight areas of clothing over the spots (i.e. my feet because of my socks.) so I would say if you try this get something that hugs your skin. I still need to go into someplace to get my blood tested for the not so obvious effects of the disease but I wanted to get this info from my experience with it out there. Thank you for your time. I really do hope this helps someone somewhere.

My 10 yr old son was diagnosed with HSP. It seems everyday it is something else and it just gets worse. Does it get better and how long will it last?