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5 year old with HSP

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donna_05556
donna_05556

My son is 5 he was diagnosed with HSP on 31st October 2014 it started with a rash to his feet then it spread to legs,bum,hips,arms,hands,face and ears. They became clustered and purple and look terrible he gets swollen ankles, feet, knees, hands. He also had swollen testickles and a swollen penis his blood tests and water samples have been ok. He had an ear infection just last week he woke up and his head was swollen I contacted the hospital to be told it is no it HSP related contact gp so I made an appointment to be told off my gp it was probably his jaw swelling there for HSP related. we had a follow up appointment Friday gone and his appointment was for 3pm we did not see a doctor till 5pm having to wait in the waiting room for 2 hours made my sons feet swell double there size and he was crying it still made no difference they made him wait. They put him on a ward and they said they were not happy at sending him home because of this we told them it was because of waiting and we elevate his legs at home then a nurse came and took a swab of his toe instead of his penis my husband and I just looked at each other in shock then we had to tell her what she was doing wrong. I feel like I can't help him its one thing after another I give him paracetamol and ibuprofen to help him and lots of TLC but I feel useless. Any advice would be appreciated

0 likes, 4 replies

4 Replies

  • terri27731
    terri27731 donna_05556

    Posted

    HSP often occurs after an infection. More common in children and boys. It is rare and there is no treatment unless complications occur. The best thing is rest and plain food. Be persistent with the medics making sure your son is monitored regularly if you do not trust your doctor change them. HSP is an autoimmune problem, the immune system has been triggered and is overreacting and attacking the body's own tissues.Try not to worry children usually recover within a few weeks.
    • donna_05556
      donna_05556 terri27731

      Posted

      To be honest I don't have much faith in any doctors because of personal reasons. Its so hard not being able to do anything this morning his left eye is swollen the doctors and reading I have done just says joints his top of his hands his head at the side around his ear and the back of his head has all been swollen I feel silly ringing the hospital all the time getting worried about new swellings to be told oh yes this is all part of HSP I don't think there is enough info on it.

      Thanks for your reply Terri

  • terri27731
    terri27731 donna_05556

    Posted

    Donna I could be wrong but what you describe does not sound like HSP to me.If this was my son I wouldn't worry about being a nuisance. Ask them how they can be sure of their  diagnosis, have they done a biopsy or a blood test? If you think he is worse or there are any new symptoms I would contact the hospital. All the best.
  • shaywalker1
    shaywalker1 donna_05556

    Posted

    Hi Donna,

    My son was diagnosed with HSP at the age of 10, he suffered from the desease for 2 whole years! he was in and out of the hospital for pain management and iv steroids. You may want to take your child to see a GI specialist and reumetologist. Between those two doctors they were able to treat my son with steroids and a medicine called celcept.

    Praying for your child to have a speedy recovery!

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