My daughter is six and has had HSP for 8 weeks. She has ...
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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.
[i:5197abd5e6]This message was automatically imported from the original Patient Experience[/i:5197abd5e6]
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Guest
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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
Guest
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worried
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Guest
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shell09973 Guest
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How is he doing...we're on week 11
Guest
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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
Guest
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Its so horrible to see my little girl go through this. Is there an end to this.
Guest
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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.
Guest
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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
severe2009
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david57031 severe2009
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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
kacy89887 severe2009
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nina45586 Guest
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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.
LyndaLou7 nina45586
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Hope your son gets better soon!
linnettrieger Guest
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Has anybody else experience anything similar?
liz07441 linnettrieger
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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