My daughter is six and has had HSP for 8 weeks. She has ...

Allergies, blood and immune system
1

My daughter is six and has had HSP for 8 weeks. She has not had any kidney involvement, thankfully, but has had swelling and a rash that just will not quit. I was told that this was a 4-6 week thing and the doctors are very casual about it outside of insisting that her urine be checked. It is very much a no blood in the urine, no worries kind of scenario. This is so distressing to me because she has suffered tremendously with the only words of advice is motrin and benadryl. This rash has ravaged her legs, her elbows, her hands. Just when you think it is clearing, another round begins. I haven't seen her normal skin in months. It starts off like little bumps. It gets very itchy and swells up like hives. By the next day, it is flat and look like purplish red bruises under the skin.

I swear there is something more going on. My daugher has been a zombie with no immune system while this is happening. She has gotten several colds, the stomach flu, and now another flu with relatively high fever. Each time her body has had to fight some other illness, the HSP symptoms disappear altogether. As soon as she is on the mend from whatever was ailing her, the bumps come back and it starts all over. I have made an appointment, and she is going to be seen at a children's hospital next week. None of us can take much more of this.

This message was automatically imported from the original Patient Experience

2

I am 22 year old femaale from Ireland.Your experience realy touches me as I have been through it for the past 2 months and can relate to the pain that u incurred.This is my story...

On the 28TH of February this year I woke up with abdominal pain i thought nothing of it at first but as the day progressed it got worse and worse so bad it was unbearable and I couldnt even walk straight it wasnt the type of pain either that gave you a break it was everlasting and very weakening.2 days later when I couldnt bear it any longer I attended the A AND E Dept in waterford Regional Hospital where Im from in Ireland.They Told me that it was infact a ''knotting of my stomach'' and the prescribed me with medication.I had infact at the time of my examination already developed signs of a rash on my legs and feet.

2 days later from that and no better I got very sick during the night,at this stage I was vomiting and the rash had got much more agressive covering my legs and also the end of my back which was the worse of all.My family became very concerned so during the night I travelled to a care doc.

The care doc was puzzled as to what was wrong and could not find anything wrong with my stomach on examination so gave me different medication and told me to go home and have a hot choclate!

Days dragged on and I was feeling worse and worse I was sweating one minute and cold the next I got so weak I could not move from my bed.The third time a doctor was called.

The doctor took my blood pressure and was astonished as to how high it was for my age,she examined me and on examination she called for my parents to call an ambulance straight away..she diagnosed me with mengicocal menengitis and gave me 3 injections of anti biotics..the ambulance rushed me to hospital where I spent a week and where they confirmed it was not menengitis but a viral infection.They killed the pain with painkillers and told me there was nothing else for what I had only that it had to go by itself.I was left out the following week as the rash had faded and I was in no more pain but felt very weak.

It wasnt long I was home and the rash started up again folowed by the abdominal pain,as the days went on I deteriated once again and another doctor came as I could not move from the house as this time my joints had become inflamed and my knee was twice its size.

It was only this time that the doctor that visitied diagnosed my disease for what it really is.HSP.He recognised it by the rash and asked me if it has started at the end of my back,which it did.

He said that I needed to be hospitalised in order for the pain to be controlled and I needed Steroids as a last resort.However he said that I did not need to go there till the next morning as the only worry was my kidneys with this disease and that in itself would take years if they were to be affected.

The next mornin I returned to hospital again along with the doctors letter and its only then they confirmed that I had this disease.

They sent me home with a small dose of steroids but the following week the dermatologist took me off them as symptoms were dying down.

The following week to no surprise I woke up during the night with rash on my legs and stomach pains I tried my best to leave it go by itself with painkillers but it just got worse and worse and ANOTHER doctor was called.The doctor took my blood pressure and said that it was dangerously high and called another ambulance.

all that night in the hospital i was vomiting I hadnt slept in days and i thought id never sleep again the pain in my stomach was so bad and nothing would take it away.I could not go to the loo without the aid of someone with me as i was so weak shakey and dizzy.However I was greatful the swelling had not come back.

After 3 days of no sleep and constant nausea a doctor was called to my bedside suring the night I was sweating so bad and blood pressure had risen again I could not eat or drink without aid of a drip,the doctor decided to try the steroids agai

3

My 3 year old son was diagnosed with hsp last month. He had severe vomitting, blood in stool and urine and rash. He had to be admiited in the hospital for 10 days. It was brought under control with steroids. After he came backhome from the hospital the rashes reappeared and he was given steroids for another 10 days and the rashes subsided. However now after a week again the rashes have reappeared. It was really a traumatic experience for me and now to see it recur is really distressing. I would like to know if the lady whose six year old daughter had recurrence of hsp has now recovered and what treatment was administered to her. After reading about side effects of steroids I am not very happy to put my son on another course of steroids.

4

I was just searching for someone out there with similar situation as myself and so far you're the closest. We have a 7-year-old daughter diagnosed with HSP ~4-5 weeks ago and been on prednisone since in addition to childrens motrin and tylenol as needed but cannot seem to wean off meds without increased spots on legs and arms, joint pain and stomach pains. We have been in the hospital twice to help with pain control of uncontrolled stomach pain and vomitting. Luckily she has not gotten any other illnesses that we are aware of but concerned if we needed further specialist involvement. So far blood and urine tests have been normal. I was just curious how things were going with your daughter as it has been several months now and if it was useful to take her to children's hospital?

5

This is exactly the same as my little boy, he has had this now for 14 weeks it is driving us mad. My little boy is three and like you I have not seen his skin clear for months, I keep getting the same from the hospital 'oh it is running its course as expected, but they don't have to see the poor little mite when he can't walk or he is complaining about the pains in his tummy, all test results come back 'satisfactory' what does that mean? He also now has very pale floating poo (sorry for this info) and the consultant 'thinks!!!!' it is unrelated to the HSP but she is running further tests.... and so we go on and on

6

Hi all

With my daughter (aged 3 at the time) it took just over 2 years for her to fully recover. As in no more blood in her urine, tummy pains etc.

She is now a mother of a 9 month old baby and has never suffered HSP since back then.

She was hospitalised for 2 weeks due to extremely swollen legs and more scary very swollen tongue and lips. Her mouth was covered in mouth ulcers and her legs covered in huge deep red rashes. She would scream out in agony holding her tummy :cry: :cry: :cry:

Are you having to test your child's urine daily with the sticks?

Melbi x

7

Hi im from Ireland and my 5.5 year old daughter was diagnosed with HSP 6 weeks ago. She was hospitalized 3 times due to swelling and severe abdominal pain. She is back to her good old self now but still has the rash and it continutes to keep coming. Her ankles swell in the evening from playing around too much. Her urine still has blood and urine in it.

Its so horrible to see my little girl go through this. Is there an end to this.

8

Yes, there is an end. I was very sick back in 1967 and hospitalised for several weeks. I think they used steroid treatment when they worked out what it was (Great Ormond Street). In those days they didn't know much and initally thought it was Leukemia. My parents were beside themselves.

I am now 45 and have never had any reoccurences. My ankles have been a weak spot for me especially when I was a teenager and I bruise very easily but apart from that I have am great. Children of my own and a career. I wish you all the best - I am sure your child will come through this.

9

Dear all, i'm from malaysia, current 27 old. I conside a series HSP patient. this thing need to back to 7 years ago when i study at australia melbourne. it a winter time so starting my leg got small small little red dot, but don't had any abdominal pain yet. this little red dot will disappear few days later, but this carry on for one years ++ than starting abdominal pain than went for hospitalised for several time, than the doctor will sure give us injection prednisone/steroids. it really work to settle down your pain and this will give me normal life for few month. but later on the red dot will back again and abdominal pain again.

all this thing happen to me again and again like now, my tummy getting pain, so i plan going to hospital this coming week end because i don't want to interrupt my work and career. very stupid right... i can't do any thing because i need to survive. so current i using pain killer to settle down my abdominal pain.

I'm not sure when it will be end for me....

just for sharing, if you are the HSP patients. please don't take any seafood especially oyster. because oyster contant huge of protein.

because HSP it consider antibody hyperactive, so if we eat more food contant protein it will build up your antibody. try to reduce it... series

second, when the red dot comming out, please let you or your children take more more rest, better sleep at bed. remember don't ever stress your self also, it will make your antibody unbalance again.

the most significant way to cure this is to REST, but as you know i need to work, so i try to use others way. like think positive, rest more.

Like all of you say HSP mostly will att our kidney,yes right. Like now my doctor giving me other medication, without steroids. like etc azathioprine, myfortic. wht current i eatting myfortic it working to me.

i really got alot of knowledge for HSP because i look for more than 10 specialist doctor,Dermatologist,Gastroenterologist,Nephrologist ...more more... i read alot of HSP aticle.

anyway, all the best, i really wish all of us can come through the end of HSP

10

i am a 27 year old father, and my 4 year old son was diagnosed with hsp in jan of 2011. it started off wirh his legs hurting but we thought it was just from playing rough all the time. i then got a call from my wife who said he had red spots on his legs and his hands were swollen also. When i arrived at my house i told him to stand up so i can look at his legs, he then replied he could not stand up even for a few seconds, thats when i knew something was wrong and immediately rushed him to the E.R. They ran test and x-rays and then came and told us that he had hsp. HSP was so unfamiliar with us, we didint know how to take it. they explained the smelliness and aches it will cause. It started off minor then as weeks passed by it got worse. His feet would swell up and so will his hands and private area. We couldnt carry him or even touch him because the pain was so bad. As a father i felt helpless because i couldnt even help my son through this pain because i really couldnt hold him or anything. I then started to focusing on him fighting it, i would put my hands at the bottom of his feet while he laid down and i would press against his feet and told him to press back, and he would press until he couldn’t, and in my opinion that helped him stretch out his bones a little bit. Then i would put my hands above hos knees a couple of inches and i would tell him to hit my hands with his knees and he would even when they were swollen., in my opinion that would help him stretch out his bones a little and he would get up and start walking all day even if he was limping the whole time. Then He would walk and play all during the day until night time because that’s when his body would be tired and the aches would get bad. So i then started to plan out his night time so he would get rest with no aches. I would take off his socks so if his feet swelled up it wouldn’t leave a bruised ring around his ankles. I would lay him on my bed because thats where he was more comfortable, then prop up his legs on some pillows so that his legs are leveled with hi body. He wore a lot of sweat pants and wind pants or anything loose just incase his stomach would swell up. and of course we gave his medicine (ibprofen) for his pain. I would put on his favorite movie and he would just watch it until he drifted off, and by morning he would be better and would do the same thing the next day. Its crazy because his hsp started to cooperate with his schedule. He would do everything normal during the day untill night time, then sleep it off and be better in the morning. He wasnt fully better but his will to walk even if it hurt him made him fight it off. Almost about a month he wouldn’t even acknowledge the pain or the willingness, he would just let us know what was swollen or where it hurt so we would know to tell his Dr. and continue like a normal kid. I know its hard in some of your cases but he did have it pretty severe and that why im telling my story. It is april 2011 now and he has no red marks, swollenness or aches anymore and is going to school and has returned back to his normal self.smile

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11

hi there, thank you so much for your inspiring story, like you I am a father for my 9 year old boy, 4days in after an HSP diagnosis. 

6 days ago he was playing football, today he can hardly walk. 

your experience has given me courage to work with my boy and kick HSP out of his body

12

Our son who is 5 and a half is in his third week of HSP. It started off with tummy ache and swelling of the knees and a few spots on his lower legs.

He is now covered with the typical purple welts on his legs, arms, buttocks and ears. No kidney involvement but severe tummy ache and leg pain.

He has been on corisone for the last 10 days as well as constant pain medication. From yesterday he seems to be in better spirits. Last night was his first night without waking up (I gave him some pain medication before I went to sleep at 10pm).

I have noticed that bathing seems to increase the flare up of spots- we are only allowing him to shower.

it helps to keep his legs raised (when possible).

He is also on an immune booster containing zinc and vitamin C.

He will be on corisone for another 5 weeks- his dose slowly decreasing.

I am hoping he is on the mend and that the symptoms won't persist like some of the cases I have been reading... 

Wishing everyone a speedy recovery.

 

13

My daughter liked to take lukewarm oatmeal baths because she thought it made her legs itch less. Weird the way it can effect everyone differently.

Hope your son gets better soon!

14

My 5 year old son was diagnoses with HSP at the beginning of the year.  His main problem during the illnes was joint inflamtion mainly in his ankles, knees, and a hand.  He is doing fine so far, but since that every couple of months he has some days with high fever and he says his legs hurt.  But he shows no other symptoms.

Has anybody else experience anything similar?

15

Hello,

my nearly 4 year old son has been in hospital this weekend with suspected HSP, just waiting on a few more test results. So far though he has only had swelling and bruising and is unable to walk... No other symptoms, similar to your son. He has said every now and again for about 2 months that his legs hurt. I was just wondering about your son, how's he doing now? I just find it odd that my boy has no other symptoms... The doctor said he'd put money on it being HSP. Thanks

16

Hello, your post was over a year ago and i wanted to know how your daughter is now? I have a 12yr old boy going through HSP and this is his 6th week now. Are her symptoms resolved now? does she get flare ups? Your insight would be helpful. I appreciate your time and i hope your daughter has made a full recovery,

17

Colleen,

My son is 9 years old and was diagnosed with HSP last week. The symptoms were severe stomache pains, the rash and swelling in his joints. HE was hospitalized for 4 days and given IV fluids, tylenol, morphine (which was later stopped after 3 doses). Befire the hospitalization he couldn't lift his hands over his head and his back hurt to the touch. Since we've been home we went back to the ER because his stomach pains were severe and now they have him on steroids and another pain medication. Today he can barely walk. My son is a star athlete and the most positve vibrant kid you could ever know and this is the most  heartbreaking thing we've ever been through. His urine test today showed protein in his kidneys so we are going to the nephrologist on Thursday. We have an appointment with the rhumetologist today. He slept well last night for the first time in over a week but every day seems like a new pain, however the stomach pain is always there. He can hardly eat. Ive been told that this takes 2-6 weeks weeks and I pray every second that this horrible virus leaves his body. Please keep me posted on your son's symptoms. 

18

Today my son stayed home from school because the joints in his ankles were hurting him so much he could barely walk. He is at home keeping his legs elevated and has taken some ibuprofen and tylenol. Fortuately, he has not been having the stomach pains lately, those should diminish within a week or so. I can tell you that every day his rash looks different. He mentioned this morning that his legs felt like they were burning. The rash is mostly dominate on his lower extremities. The rash is thankfully not itchy but it looks to be dry and flakey. I will continue to keep you posted. This is comforting to have support from other parents that are going through the same thing.

19

Colleen,

Thank you for responding so quickly. It is comforting to speak to other parents who are going through the same thing. My son doesn't have school this week but I'm starting to worry and wonder how  we will deal with school going forward. I guess we'll take one day at a time as this seems to be par for the course with this virus. I'm told not to give my son ibuprofen right now. I'm sorry you're going through this. I wish never heard of this damn thing. Please feel free to email me anytime day or night and please keep me posted on your son's condition. Best of luck to you and your family. 

20

My daughter is 5.5 and was diagnosed 5 weeks ago. She was not great for 3 weeks, huge bruising rather than the rash, had a week clear then it came back with the rash and bruising. She's now suffering with headaches. I find the whole thing so stressful as there is nothing we can do for her. I have another appointment at the gp today as calpol doesn't seem together headache, I also want too know how long we anise calpol for, over use won't be good for her liver.

It is encouraging to see that it does get better, but leaflets given from the hospital that say it lasts for 4-6 weeks should be updated, if as a parent you are told months then at least you prepare.