Hsp help

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My 10yr old daughter was told on Easter sunday that she has hsp. She has had really bad swelling in her hands feet ankles and knees since . The knee swelling has got better but feet end up like a balloon come late afternoon and the rash always rears its ugly head around the same time! Her temp keeps spiking to 38.7 to 39.1 yet blood pressure seems ok as does her dip test. She is in pain with her hips and complains her tummy hurts but that's not all the time. The other day she was complaining her right side /back was hurting her. She doesn't get a restful sleep but is happy enough to go to school for a few hours altho wheelchair is needed to get her there and back.

She is starting to get very frustrated at this and keeps asking how long it's going to be before she gets better!!

We are in the 4week since rash appeared please help with advise as the hospital just tell me it will take its course and she may get it on and off for life .

Surly something must help recovery. Driving us nuts now , just want my girl to be able to enjoy doing the things she loves without all the pain 😥

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  • Posted

    Our son (5 and a half) is also getting very bored and frustrated at home!

    He has had HSP since 1 April. 

    He is on cortisone which has helped the swelling and pain, and the rash has almost disappeared. He started on 10ml per day for the first week with the dose slowly reducing for a period of 6 weeks.

    He is taking an immune booster of zinc and vitamin C.

    He takes pain medication when needed (he still has tummy pain particularly at night).

    Our doctors have advised us that he is not to go to school until he is 100%.

    He is in good spirits now- just wants to go to school- but we are keeping him at home until he no longer needs any pain medication.

    Hope your girl recovers soon!

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    • Posted

      Hi, thanks for the reply, looks like they have got it around the same time. My daughters rash started around the 29th of March but swelling not til few days later altho complaining of joint pain before swelling, I'm going to go get some supplements to help boost her immune I think and maybe have another chat with doctors.

      They said she could go to school as long as she feels up to it and to be honest she is so fed up at home that I've said to her she can go if she wants but doesn't have to. Been doing half days which helped her frame of mind. The school have been great with her.

      Sorry to hear your son has it

      Let's hope they both feel better and on the mend real soon.

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    • Posted

      Yes, let's hope they both feel better soon. It has been so hard to see our very active son so sore and incapacitated.

      The first thing we noticed was a few spots on his lower legs and the next day he complained of a tummy ache before school. When I collected him he had severe tummy pain and swollen knees. It was then a good 10 days of swelling on different parts of his body- ankles, back, wrists- and severe tummy pain until we saw a specialist who prescribed the correct dose of cortisone. 

      Now, other than tummy pain (mostly at night and first thing in the morning)- I think until the next dose of cortisone kicks in- he also has slight continuous bleeding from his nose...

      Poor little ones! Glad your school has been supportive.

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  • Posted

    My 12 year old had HSP this past November for about 6 weeks. Her leg joints hurt & her legs were very itchy & swollen. The more she was on her feet the more they hurt. Elevating her legs helped a lot. She also had a lot of stomach pain & didn't sleep well for a couple weeks because of it. It was frustrating but our doctor told us that it would have to run its course. Make sure your daughter gets plenty of rest & stays hydrated.

    In about 30% of cases, HSP comes back in the first few months. My daughters came back in February. Her symptoms have been very mild compared to the first time & she hasn't missed any school. It is lasting longer this time though, as she still has it. I know if she runs a lot that her legs get red & itchy. I have her elevate her legs for a bit & she's fine.

    Sadly our children may get this repeatedly throughout their lives. It seems to me that since HSP comes back when their immune systems are low, that eating well & making sure they get rest (so they aren't run down) would help them.

    I hope your daughters pain subsides & she gets better soon.

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