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!!

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10 Replies

  • Posted

    Are the doctors reluctant to give her Prednisone? I think it will alleviate the symptoms, and definitely help the swelling in the kidneys.
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  • Posted

    Thanks for your reply. They haven't mentioned any other medication but steroids, they said steroids are literally last resort though and the enalipril is working (albeit slowly) so they're wanting to keep on that, but at the same time they keep saying how long the protein and blood has been ++++ so it's starting to get worrying about long term kidney problems. The enalipril is purely for bringin down the protein levels, they haven't said anything will alleviate her symptoms and basically said its a case of grin and bare and ride it out. Not so easy to explain that to a 4 year old who is getting more and more depressed about it.
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  • Posted

    Because she is a child, I am not sure. But steroids ARE NOT the last resort for adults. They can really help... and can even prevent scarring in the kidneys.... Yes, they have different side effects in people, but based on what you described, if you balance what she's going through now and side effects (like weight gain, insomnia, etc) it is definitely worth it. I would advocate for steroids. You can always stop it if you chose to. As far as I know, Enapril and Quinapril etc are medications to lower blood pressure that are suggested to help the kidneys- but only SUGGESTED, not confirmed to. I wish I knew more and could help you, as I have a 4 year-old myself. I took steroids on and off, and I had a good experience (less symptoms, inflammation, protein, etc) but did gain weights and had tons of energy. Good luck and keep us posted.
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  • Posted

    BTW, are you in the US?
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  • Posted

    No UK, yes the enalipril is purely for bringing down the protein levels apparently. They said she would need to have steroids intravenously so it would mean a very long stay in hospital which is why they want to avoid it. She's lost lots of weight so weight gain would actually be a good thing but they said she would be incredibly ill whilst on the steroids and couldn't be near any other children through risk of illness.
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  • Posted

    Why would it have to be intravenously? Even so, I think I would take a chance and see how it goes, b/c she seems so miserable right now. I have been hospitalized for IV steroids twice and I felt great (3-4 days in the hospital). But again, this was my experience.
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  • Posted

    They said it would need to be that way because she would get so sick on them. rolleyes She has another appointment on wednesday I think I will discuss it with them again, it's getting silly now, 4 months of misery for her and not much progress. I've asked numerous times about other meds and just get told no these are best but maybe if i really push it something will be done. Automatically I assumed they were doing all they could but after looking on here I see people talking about loads of different medications...feel like she's being used a guinea pig tbh because they're always aking me questions like they're unsure of what should be happening and what her side effects will be on these meds and always always always have student drs come in to ask questions and ask to have a look at her, it took 5 drs to give us a diagnosis after 8 hours in a&e and that was purely by chance because she had seen it before, not one of the others had seen it before and her renal consultant was asking if we would wait several extra days for further biopsy results so she could look at the biopsy too "as it's all terribly fascinating" I'm sure it's great for them having not seen it before but in the mean time my daughter is suffering whilst they pussy foot around stronger meds and proper treatment. Thank you for your help and advice, I think 3/4 days of feeling unwell on steroids would be better than another god knows how many months on enalipril and her feeling like she does.
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  • Posted

    I'm sorry to hear of your terrible experience.

    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.

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  • Posted

    Hi Nichola

    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

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  • Posted

    Hi there, I'd like to share our experience as it's been and still remains a very stressful time for us. We're based in Rome, Italy and our 5 year old daughter started displaying symptoms on 13 Jan (spots on her legs, painful limbs) so the wife insisted we take her to the A&E where she was immediately (well, after a 3 hour wait) diagnosed with HSP. Our girl is also coeliac so we were initially worried it might be related - we've been assured it isn't. I'm thinking it's just very bad luck. Twice. Anyway, her symptoms come and go, she goes to pre-school for a week and then is home for a week or so when the symptoms flare up again. We're been checking her urine with these urine sticks at home as internal bleeding in the kidneys is a risk but luckily she's fine. Three months on and we're still in the middle of it. She's been off school again now for two weeks, her hands and legs are still full of spots, painful and swollen. We've given her nurofen for the pain when she complains of it. And that's that, very stressful not knowing what caused it or how long it will last. How is your little one?/How are your little ones?
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