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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!!
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