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
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.
0 likes, 6 replies
harleycw Renmarsh
Posted
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.
david57031 Renmarsh
Posted
We are now clear 5,months on and life returns to normal.
Its a long haul. How your daughter recovers soon.
Regards
carrie05610 Renmarsh
Posted
Beanie926 Renmarsh
Posted
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.
Maureen
karen1737 Renmarsh
Posted
Hope your daughter feels better soon.
karen1737
Posted