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Five year old with hsp

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brittany08747
brittany08747

My five year old daughter just got diagnosed with hsp about four weeks ago. It's been a nightmare ever since. Every part of her body has swollen, including her head and spine. She couldn't walk some days because of the pain. Then, one day she started vomiting blood. We rushed her to the ER. They found her hsp had caused intususseption, so she was rushed into surgery and had 28cm of her small intestine removed. She began vomiting 18 hours after that surgery and they did a Ct scan and found her intestines were twisted. So, she was rushed in for a second emergency surgery. I'm so worried about her and worried when this will end! Has anyone experienced intususseption with hsp? When can we sleep and know our sweet baby will be okay? So far her kidneys are checking out good so we are very thankful for that. We are relying on faith for the rest.

1 like, 4 replies

4 Replies

  • rocky31676
    rocky31676 brittany08747

    Posted

    In theory, hsp is supposed to be self-limiting disease. 

    However, if there are complication, like kidney inflammation, nephtitis, or intussusception, then it will take long. 

    Have they given her prednisone ? 

  • angeAU
    angeAU brittany08747

    Posted

    Hi Brittany, 

    I am so sorry to hear you are going through this. My 4 year old was diagnosed with HSP a week ago and we have had alot of abnormal swelling all over her body as well including her head and spine too. They have put her on the prednisone and the swelling is still happening but the peadiatrician did more blood tests and said that they are all good so we are still going on the diagnosis of HSP and let us come home. I have been checking on her constantly as its very bizarre. 

    My other daughter had intussuception when she was 11 months old  and she also had to have surgery. She then had an adhesive bowel obstruction 6 months later.. another emergency surgery. Its very scary stuff but she is now 2.5 years old and is thriving.   I am starting to think there is a genetic link between HSP and intussuception  as my sister also had HSP it 15 years ago.  Its too much of a freaky coincidence. The peadiatirician said that there isn't enough people in my situation to do a study on it. Do you have anyone else in your family that has suffered with this?

     

    • brittany08747
      brittany08747 angeAU

      Posted

      Hi! Sorry you have to go through this too! It is very bizarre. My nephew also had intussuception this last summer. He was two. He was lucky though because they were able to use forced air to correct his. There must be a link. For it to be so rare and happen to two family members. So far none with hsp besides my Coop. I hope your little one feels better soon!!!
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