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Trial and error - think I've found something

Posted , 4 users are following.

lucynewas
lucynewas

My daughter's rash started to flare up again and she became very fatigued - so I tried nurofen 200 mg and an antihistamine - which resulted in her feeling better with increased energy levels.  May have been a placebo effect, but worth a try?

My rationale was that if this is an autoimmune reaction, then by suppressing the immune response with anti-histamine and reducing the inflammation with a low dose anti-inflammatory might help - and seems to have done.  I shall keep a log from now on as my own study.  Like dealing with a crying baby - it helps to keep busy trying something new.

0 likes, 8 replies

8 Replies

  • donnie99
    donnie99 lucynewas

    Posted

    Any results?
    • lucynewas
      lucynewas donnie99

      Posted

      Seems to be working in terms of keeping the rash at bay - absolutely no clincial evidence - but even if it's just placebo, it's improving her quality of life.
    • pelhamed
      pelhamed lucynewas

      Posted

      I am going to start trying benedryl with my son. Dealing with hsp since early december. We are tpering of the steroid (not sure if it ever worked). If anything the benedryl should make him sleepy and maybe allow him to have a night of rest without pain or throwing up.
    • lucynewas
      lucynewas pelhamed

      Posted

      let me know how it goes - the steroids are really to prevent further pressure or kidney damage - they don't really address the rash.  The antihistamine we use is loratadine or cetirizine.  They cause less drowsiness.  The NHS website in the UK reports that antihistamines are known to help with eczema (which is auto-immune) so maybe this is why they are working?  Keep me posted with your progress or PM me.
    • pelhamed
      pelhamed lucynewas

      Posted

      It's too early to tell but the first night was pretty good. He slept through the night. In my son's case the sterioid is for the belly pain.

      In his case the belly pain has been the hardest simpton to deal with. When it started the first time he was in a lot of pain, in the emergency room they were giving him morfin in the IV (they were pretty clueless btw) eventually his pediatrician figured it out. It has been up and down since then. First week was pretty horrible not being able to eat or drink for 5 days and lots of pain, then he had a relatively normal week, he even went to school 1 day and he started another week of fun vomiting 4-5 times a day without being able to eat or drink, the following week agian pretty normal (with managable pain). Now pain comes and goes pretty randomly. 

    • pelhamed
      pelhamed

      Posted

      Didn't work. back in the hospital

      IV, more steroids, morfin, ...

    • lucynewas
      lucynewas pelhamed

      Posted

      Oh I am sorry to hear that.  Steroids are unusual for abdo pain.  Have they tried mebeverine?  it's much less aggressive?
    • ciara94952
      ciara94952 pelhamed

      Posted

      Or buscopan could help too? I was on morphine, steroids as well as buscopan and paracetamol when first diagnosed
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