7 weeks and counting

Posted , 6 users are following.

My 10 year old daughtet is still suffering  from this awful disease. 

Her swelling on the ankles and knees has gone down although ankle swelling does come and go! The rash is still appearing on a daily basis  mainly on face, thighs or arms now and she is so pale looking all the time  

I think one of the worse things is the pain she is in. She is constantly in pain in the hip joint,legs ,wrists fingers and complains  of a headache quite often. 

We went for a check up on the 5th week from being discharged  from an over night stay in the hospital  and to be honest i came away quite deflated and upset when the consultant  said ah its fine call me at the end of may if she hasnt improved  but in the mean time carry on with pain relief which might i add seem to do absolutely  nothing  sad  

My poor girl  can't  walk up the stairs she has to drag herself up by sitting  on her bottom and pulling herself onto the next step and on a bad day myself or my husband has to carry her up the stairs which as you can imagine  is some weight to keep on carrying.  

our gp  said he feels she hasnt made any progress  over the last 3 weeks so we should consider maybe steroids to help and advised me to call the consultant  which i did do. apparently  he is sending her to see the rheumatologist  specialist  for symptoms  of juvenile  arthritis . 

She clearly has this going on as she is hunched  up in pain when walking.  My question is has anyone had the arthritis if so how long did it last? We were told there is a very slim chance that this juvenile  arthritis  could stay with her throughout  childhood. Has anyone else had long term arthritis  since this. 

Thankyou for taking the time to read this long winded post . We are going out of our minds watching and not knowing if this will get better. 

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  • Posted

    Just my opinion but at this young age not sure about steroids, but Prednisone did it for me.  Just don't listen to people talking about taking it a long time.  If one goes on it for HSP it should be a taper, meaning large dose, then working down smaller smaller each day (don't ever go suddenly off it or it will mess up your system).  I see results typically within a day or two at most.  Had intense joint pain and it almost immediately cleared up, but the longer you have the pain likely it will also take longer to clear (If it is indeed due to HSP).

    Second thing I would strongly advise is rest, rest, rest.   The body needs plenty of rest and sleep and any exercise with HSP can make it get worse again.  With kids, this is extremely hard to convey to them.

    Third is I suspect many cases have a strong correlation to some type of allergy, which is why I think Rheumatologist is wrong and instead you should be seeing an Allergy and Immunologist.  When I went to immunologist he know right away what I had and how to manage it.  However, what nobody seemed to figure out, but I am fairly certain of in my case, is there is a perfect corrolation to chocolate.  If I ingest any amount of chocolate, no matter how small, the spots start coming on and I have another episode.   

    I am not saying chocolate is responsible but I do strongly suspect that in many cases, people should be careful about tracking what kinds of foods they are putting in their body and try to cut out and alternate especially allergy sensitive foods just to be sure they aren't at least a trigger, just like sore throats are a trigger for this.   Anything that invokes the body's immune response basically throws it in uncontrollable hyper drive leading to the HSP conditions.

    In this group I have heard that alcohol, coffee, milk products, and now chocolate could all be potential triggers for people.  We won't know until more people with HSP report on their own usage and results based on foods they stop taking but it's certainly worth cutting a bunch of suspected things out until one gets better, then slowly introduce them to see what effect it has on them.

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  • Posted

    My 4 year old son suffers with hsp and Evan a cold brings it out his feet and ankles  get very swollen and he can't walk and in a lot of pain I found nothink worked only steroids I don't like him haveing them but that's the only thing that gets him better. Hope she gets better soon .
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  • Posted

    Hi. I'm sorry your daughter is still feeling lousy. I wish I had some magic words for you but I only have my daughter's story..

    Her doctor also sent us to a rheumatologist to make sure we weren't missing anything. She had already diagnosed HSP but wanted a second opinion. The rheumatologist agreed and did bloodwork for everything under the sun. It was all negative so we knew it's HSP and unless she had other issues or did not begin to improve at some point, we won't see her again. Her primary doctor will check her urine through August but up until now, it has always been clear.

    In my last post, a little over 2 weeks ago, I said that my daughter had slightly turned a corner. I was afraid to say it because we had thought that before and she went downhill again. Well, she is still in school full days and the rash is better.

    We are now at 14 weeks of HSP. Her biggest complaints now are nausea which she has all of the time and dizziness which is very frequent as well. She has a little rash still on her feet but it doesn't really bother her much. Her stamina is still very low and she's not able to do much physical activity. She does have joint pain at times in her knees but not too bad at this point. Again, she's not doing much now anyway.

    A big concern of mine at this point is the stress and anxiety level she is at. This whole thing has been so frustrating and exhausting. It has effected the whole family. I feel like I still can't help her and I can get aggravated which, of course, turns to guilt. I decided to have her talk to a counselor and she seems to be liking that. I hope that helps her get through what I am hoping is the last part of this. She's a 13 year old girl who feels out of place. It breaks my heart.

    I am hoping that some of my experience with this may help you in some way. It seems like forever, I know. I also know how frustrating it is when they say "it has to work its way through her body" and be patient. Easier said than done.

    Good luck with your daughter. Keep us posted.


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  • Posted

    Steroids are a horrible thing to take. I'm 45 and have been battling this off and on for 15 years without drugs. I got it again first of January and it just now seems to have run its course this time. It won't last forever. But it may take another few months. This time I had pretty significant swelling and joint pain. I don't think steroids fix the problem, they probably just treat symptoms. I know they don't make the spots go away.

    Hope your daughter feels better soon.


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    • Posted

      Oh, and I don't know if kids get it again after they have it once. Adults do or can and I certainly have. But I can go years without any symptoms.
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