HSP A YEAR ON PLEASE HELP !!!!!!!!

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Can anyone help I am literally at the end of my tether and feeling so helpless for my daughter. She was diagnosed last March (2017) with HSP had horrendous swelling and rash which left her in a wheelchair for 2 weeks. Luckily bowel and kidneys have not been affected. Since last March she has been so ill. The amount of time she has off is ridiculous. She tends to start with a sore throat, then a cough, then her legs ache, she becomes very vacant, gets a temp and will literally stay on the couch for a whole week and the only way she explains how she feels is just not right. This happens so often and she is fed up with it as she is only 9 and wants to be out playing. Does anyone have any advice ? Is there anything I can give her to try and boost her immune system ? I really am hoping this is going to end soon. Thanks in advance X 

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  • Posted

    Hi Danielle, My son had HSP when he was 4 years old about and he was put on a tapering dose of Prednisone for a few months. Have the doctors tried that medicine yet? I am so sorry you are going through this. My son's lasted a few months though a lot of the worst symptoms went away in a month or so and I was devastated just not knowing how long it would last. We found that the pediatric rheumatologist was the most helpful b/c she had dealt with several cases of HSP and knew more about how to treat it. Sending you strength. Take care, Jeanna

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    • Posted

      Hi, thanks very much for your reply. She hasn’t had any medication yet as when I have taken her back for her check up the drs don’t think her being ill all the time is related but it definitely is as she even gets a slight rash on her bottom. Do you think I should take her to the drs and explain it to them and see what they think ? It’s just such an awful condition and I don’t think they have much of an idea about the aftermath. How has your son been since he got better after the few months ? Thanks Danielle. 
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  • Posted

    Hello Danielle, my heart goes out to you! When you were relaying your experience it brought back very sad memories of our experience with our daughter. She is 9 years old presently.

    I agree with Jeanna, visit with the Pediatric Rheumatologist asap! Do not allow anyone to sway your decision. Most Pediatricians just do not have enough experience with HSP.

    My daughters experience was very similar to yours. We had to take the step and homeschool her because her immunity was so compromised that she was literally getting sick every week to every 2 weeks. One antibiotic after the other and tons of analgesics( pain relievers) which is not healthy for the organs when used so often. She has greatly improved. It has strengthened her immunity through hydration, rest , and decreased exposure to germs. We do take her out, we just take precautions like making sure she washes her hands frequently when she touches things like shopping carts etc,... You are in my prayers.

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    • Posted

      Hi, thanks very much for your reply I am going to take her and request an appointment with the paediatric rheumatologist. It is in a way nice to know it’s not just me that is going through this although I would never wish hsp on anyone it is nice to have someone to talk to. How long has your daughter had hsp ? I hope she makes a full recovery very soon. I have been considering keeping her in the house and never letting her out as that seems the only way of trying to stop her getting ill. Like you said numerous antibiotics and pain relief after pain relief to bring her temp down and stop the stomach ache none of this can be good. I am hoping that if I get an appointment that they may be able to help. I got told that it should be out of her system in 2 years have you heard anything anout this ? Thanks Danielle

      And thanks very much for your reply x  

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    • Posted

      Hi Danielle,

      My daughter has had this for one year come May. This disease is a form of vasculitis as such it also affects the lining of her stomach. When she has a tummy ache avoid all acidic foods, such as orange juice and tomato based sauces, spicy or over seasoned foods. Please avoid ibuprofen if possible as that will irritate her tummy even more. Lots of broth and clear fluids especially water which will also keep her kidneys functioning. She doesn't have to stay indoors all of the time, fresh air is very good for her, what you want to avoid is sick, germy people including family. Allow her to nap at least one hour a day. I hope this helps.

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  • Posted

    Hi,

     So sorry to hear about your daughter. My daughter got hsp when she was 11 and missed nearly a year off school. We tried a variety of suggestions on this portal from others and I believe that a few helped in her case. For one, initially being on a diet rich in vegetables and fruits helped. I also noticed that probiotic foods like Kefir, kimchi helped. As she got better, we have given her yogurt every day and also give her  vitamin, d, b12, probiotics. I do believe that these are helping her(I believe in the theory that these diseases to a good extent are linked to your gut bacteria). Btw when she had pain due to the hsp, we tried a variety of things and noticed that accupuncture (again suggested by someone) helped to relieve the pain. Hope some of this helps and that your daughter gets better soon. 

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    • Posted

      Hi, thanks very much for your reply. How old is your daughter now and is she completely better ? I am starting her on daily vitamins to see if this helps in anyway. She eats a lot of fruit and veg already so I will try and up that some more. I am really thankful of your advice as I am willing to try anything. I hope your daughter is okay. Thanks for your reply 
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    • Posted

      My daughter is fine now..So hang in there, it does go away (though during the hsp, it seems like forever). We tried everything when she was sick. For e.g. we tried bone broth, alkhaline water, different probiotics, keeping off diary, a2 milk, manuka honey etc and noticed that some foods made her worse and some helped...Over a period of time, she got better. 
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