Anything more that can be done?
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My daughter is 4 and was diagnosed with HSP on december 2nd after coming out in the rash and swelling of legs. She had a month of the rash and swelling coming in waves then on one of her check ups they detected protein and blood in her urine, within a week this had gone through the roof and she was then transfered to a renal consultant, she had a kidney biopsy which showed little swelling to the kidneys but the protein was still massively through the roof so they started her on enalipril tablets, she has gone from 1.5mg a day to 7.5mg twice a day (the highest dose she can have) she is on a salt restricted diet as well as fluid restrictions (to prevent swelling) the protein was dropping VERY slowly but last week increased again and now her potassium levels are too high so now also has to have potassium restricted diet too. Her appointments are fortnightly and we just keep getting told they'll see how she goes with another 2 weeks of the enalipril, I've asked if there are any alternative pills she could have as these don't appear to be doing much but they're reluctant to try other things due to her age. Her wee is bright red 3 out of 7 days a week, shes incredibly tired, always nauseas, sick several times a week, joint pain daily and rash flare ups once or twice a week. She has had nearly 4 months of endless appointments, pills, blood tests, she's picking up every bug under the sun due to her immune system being so low and had numerous hospital stays due to being so violently sick on occassion so I just want to help her! is there ANYTHING more that can be done????? It's heartbreaking to see her so poorly all the time and the Drs just don't seem bothered! Any help or advice greatly appreciated!!
0 likes, 10 replies
YoungMom
Posted
nichola32658
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YoungMom
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YoungMom
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nichola32658
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YoungMom
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nichola32658
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YoungMom
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1st: with children it shouldn't be so intense, therefore the doctors must do something since it is not normal that it has been going on like this for 4 month...
2nd: go for a second opinion if you can.
I don't know why all the medical people involved are so surprised b/c this is supposed to be a common vasculitis in children...
I don't know what to say, but I do think steroids can help. At least with symptoms. And try to see a different doctor...
Best of luck. I hope she feels better.
laura96716
Posted
I would worry about steroids in children and trust the consultant with it. Look into the side effects in children compared to adults. There are other side effects to consider other than weight gain such as the affect on growth. Discuss with the consultant why they hold off with the steroids, they have to balance if the side effects will cause more problems than the condition. The enalapril is aimed to minimise the risk of renal deterioration, I know it gets used routinely in adults for this.
My daughter was diagnosed in December too, she's definetey not been affected as much as your little girl. I know I found it distressing to watch my daughter , I can't even imagine how hard it is to watch what your describing.
We'll keep toes and fingers crossed here that the HSP starts to resolve. Xx
deep48021
Posted