When does it stop????

Posted , 6 users are following.

My daughter is 12, Aug diagnosis was hsp. I was told that they will go away in a couple weeks then maybe reappear and we will never be effected from this. Now we are in Dec and new rounds are appearing before the faded are half gone. We are on our sixth round back to back. Joint pain is getting worse and now the bottom of the foot. All blood and urine test are normal. When is the "clearing" of spots going to happen. She's missing school with spirts of activity. Please help

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  • Posted

    Hi Kari

    My daughter is 15 and was diagnosed in october.  She is still recovering from the first bout.  We've been told that it will flare with infections and anything else that overstimulates her immune system.

    Try regular half dose anti-inflammatories like nurofen (or the gel on the joints) and roll on products like biofreeze.

    Probiotics can help to reduce systemic inflammation, so I've got my daughter some pharmaceutical grade ones from a specialist health store.  And a general tonic like melatone may help.

    Do keep in touch.

    The spots will clear up when the inflammation starts to go.

     

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    • Posted

      Thank you so much for your information :-) Sorry for the delay, iWork a lot.

      I'm really confused about the part in which the cause of this is due to a virus then HSP can develop. My daughter was perfectly healthy all this started. We have to go to the UW Madison Children Hospital in a few days to be treated due to the condition being beyond what her Dr's have seen.

      Once again, we missed school today. It's almost as if two active school days is all she can take then four to five days down. I see her getting depressed and she's so tired of this. Do you see patterns like this with your daughter? We are going on week 17.

      Currently they have her on 2Alive twice a day,ice and rest.

      How is your daughter recovering? What complications does she struggle with most? Do you notice a pattern in her cycle of everyday tolerance?

      Thank you so much for responding! :-)

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    • Posted

      Dear Kari

      My daughter is 14 and has linked up with another teen on facebook and they support each other - if you like, we can link your daughter up to - PM me if your daughter's interested.

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  • Posted

    I was 19 when I was first diagnosed, which was last December. I've still got hsp and have regular bouts. I've tried steroids (which I'm still reducing off) and immunosuppressants as well as dapsone (which it turns out I'm allergic to) and I'm currently on colchicine. I saw no real improvements until this August and now I do get days where I can do 8/10 hour shifts and be completely rash free as well as go out and drink alcohol like a normal uni student.

    I've realised that the steroids and immunosuppressants never helped, just made me more susceptible to infections and therefore flare ups. I've stopped taking the pill as well.

    Moving to a more natural diet including loads of fruit and veg, taking probiotics and avoiding too many inflammatory foods like red meat and sugar has helped massively I believe. And I'm hoping that I'm slowly getting better with this.

    The stomach pain only really lasted the first 2 months or so and I was hospitalised 4 times during that period for a total of 3/4 weeks.

    I developed iga nephropathy but my recent urine dipsticks have shown to be clear which is really good. My kidney biopsy showed that although the hsp was there, there was no scarring or change to my kidneys/kidney function.

    Joint pain only lasted the first 2/3 months although up until April this year, I'd develop the odd swollen knee or ankle.

    It's mainly the rash now which is normally only brought on my physical exertion or stress.

    This isn't to scare you, but I naively believed this would only last the 4/6 weeks I was told as well. It's just to make you aware it can last longer but it won't always be awful and it will improve. I'd also advise drastically changing diet before trying any of the stronger medications that doctors will no doubt offer.

    My case has been quite severe and I am slightly older which probably made it worse. Mine was also triggered by having my hepatitis b vaccine for my nursing studies. If you have any questions, I'd be happy to answer. I've spent the past year living and breathing hsp, and reading every journal article and study done on it and the medications for it. Hope your daughter keeps on getting better xx

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    • Posted

      dear Ciara

      Sorry to hear about your experience.  I'm a nurse too and interested that yours was triggered by the hep b vaccine - my daughter's was triggered by HPV - but so far the medics seem completely unaware of any relationship.  

      My daughter has IBS, which on further digging appears to increase her risk of auto-immune response - I'm keen to research this further.  

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    • Posted

      Hi Lucy!

      Yes it took a while for them to realise but they have actually linked it to the hepatitis b vaccine and I have written confirmation of that. Many medics I tell don't want to believe that it could be a vaccine that is being promoted for everyone to have.

      It's only recently that I've researched autoimmune diseases and realised many of them seem to be linked or stemming from similar causes. I find it really interesting and eye opening.

      How is your daughter doing at the moment?

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    • Posted

      Thanks Ciara!

      This is our story, we are going to the UW Madison Children Hospital in 4 days due to the 3 doctors that diagnosed her have never seen it "this far". Maybe some insight before walking in to the appointment will help my understanding.

      One summer day she takes a shower and bam....spots. She had been complaining of joint pain prior...but she's a growing girl. Took her to ER, Dr dx her with HSP, hospital head Dr dx her with HSP. Took pictures for their records. Primary Dr say's she thought dx was far fetched, she looked at pictures and agrees. Says it'll go away come back and go away. Not to worry. Her pain continued went back, dr looks at her and says I can't help you. Never seen a case like this she needs children hospital. So waiting for appointment for children hospital pain gets more and more frequently, UW hospital nurse says something vascular in joints are common with HSP. All she can do is try because the pain is real and painful. Rest and Alive. Poor kid i

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    • Posted

      We are on week 17. It's two days on her feet then its like she can't do it anymore. Four days off her feet her spots fade, she feels better, ready to take on the world. Then two days of school and she is out of business...

      She was perfectly healthy when all this started and has yet to catch a cold or bug

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  • Posted

    I was diagnosed with this illness when I was 11 and I'm now 18 you can go threw stages of this i cooks be clear for a couple of weeks and go bad again. I have been clear from the rash and mager aches in my joint and kidney problems for about 3years now it can be a long process but hopefully it will leave you're daughter soon enough
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    • Posted

      Thank you for your support! We have yet to see any breaks from the rashes in 7months. She has an dermatology appointment this week for biopsy. It seems like she has about one week a month she is so fatigue and extreme plain she hardly can get up and be motivated. Hoping for some answers!
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    • Posted

      It's so difficult with it as so many do not know! I found great help with dapsone, although it turns out I'm allergic to it and caused a horrible reaction called DRESS syndrome. I know that other people who have tried it have had great improvement on it. Or maybe something like colchicine. It's colchicine that I'm currently prescribed although I rarely take it as I'm not sure of how much it helps. I try to modify my food and see if there's any triggers there and also my activity.

      It may be worth asking the dermatologist if it's unbearable for the rash but those two drugs will only really help the rash I believe.

      The initial stomach pain was only alleviated by steroids for me although they helped with nothing else, and coming off them took a year which I hated!

      I also seem to get certain weeks in the month where it's so much worse, I'm wondering if hormones have a play in it.

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  • Posted

    Hi Kari

    I have a 12 year old son that is in week 5 of this horrible condition. With all the reading I have done I have discovered it could last up to 12 weeks however it could last longer. My son is an active hockey player and he doesn't let this condition affect him. I have found that when he is in pain I give him tylenol and Ibuprofen AS NEEDED. I am concerned about the long term effects of given these and will be talking to the doctor shortly about it. In regards to the rash, what a mysterious rash it is! i have never seen anything like it and i had every childhood rash known to man; from chickenpox to measels. I think the good thing about the rash is that it doesn't itch very much but my son tells me it's more of a burning sensation. I do give him anti-histamines that seems to resolve that problem. In my opinion the best thing to do is give plenty of love and support and don't let this thing run your life. Keep her interested in her activities and encourage her to be active when she is feeling up to it. Let me know where she is at in this endeavor as i see your post was from two months ago. Best regards to all parents out there dealing with this issue that are looking for answers.

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