Hsp nephritis with proteinuria 13year old 6 weeks in

Edited , 3 users are following.

my daughter has hsp again this time her kidneys are leaking for 2 weeks shes had 3+ protein & blood shes also got coco cola urine & her PCR levels at 259 anyone no at what stage the kidney biopsy will be done? apparently her kidneys can leak for weeks yet! she had this also in december shes been admitted to hospital during this episode with drhydration & high bp also had iv glyids and got cellulitis whilest in hospital & gastro meds shes had every complication going and still no chamge im going out my mind constanly weekly hospital visits for bloods & urine, how long or what stage does she need to get before renal take over her care?

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  • Edited

    noticed i put same image up- first time on here sorry

    also the rash was covering her body including soles of feet & palms of hand, i have

    never seen it spead so bad

    imageimage

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  • Edited

    are you in the uk? can you call the vasculitis society? they are a great resource in asking for the correct consultants and how to get seen by the right people. please do give them a call.

    keep a food and activities diary and find out if there are any key triggers. for me it was wheat, sugar and high impact exercise. as well as stress. keep taking photos of the rash. its a great tool to get times and dates of flares and when they go away.

    your daughter needs treatment.that is a significant rash and perhaps they wont need to biopsy if they feel diagnosis can be made another way. kidney biopseys do carry their own risk. i had one to confirm my illness of hsp but only because they couldnt diagnose it in another way.

    good luck x

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    • Posted

      hey yes im in the uk, my daughter was a fit healthy girl, september ahe has ruptured appendix & got sepsis. she first got the hsp in november/december it went after 4/5 weeks her joints swell up so she couldnt walk but no protein & blood in urine, she was well for a month then got a troat infecton in febuary then this in march - all her discharge notes state if protein & blood shows on dip stick for 3consevugive days then seek medical review & if uri e coca cola colour then shed need to be seen so it just baffles me tbey are waiting for the PCR to be hightdr . i thought the next stafe was midney biopsy? we no its hsp with kidney & gut involvment but how ling can i child eak from kidneys before shes really poorly? tbank you for comment xx

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    • Edited

      https://www.vasculitis.org.uk/

      they are are a great resource. amd some good information on how hsp works.

      please dont think there is nothing you can do in the meantime. be as healthy as you can. get your daughter 5 to 10 portions of fruit and veg a day and move as much as possible in a kind way to the body. remove as much stress as possible. there is nothing as disempowering as being told to wait for a doctor to see you. even if being as healthy as possible doesnt fix the hsp it will make the body stronger so it can rebound better. try looking up functional medicine practitioner s im your local area and find out if they have experience of inflammatory disease. do research. there are books on vascular issues available in the library - hopefully we can get back to there soon!

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    • Edited

      ive been intouch via email didnt realise he wasnt a doctor sent him a whole load of her info from hospital he

      did however recoment a lady at alderhey hospital so i found her email online & mailed her  xx

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  • Edited

    please keep her in the hospital . her kidneys need to be watched carefully. my son has this and at 13 wwnt away after a month then came back at 19 now hes 24 . he gets a urine rest every month and his gastro problems are horrible . he quit college and is homebound .

    i am so sorry the blood vessels burst externally and internally as welll

    !

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  • Edited

    image

    urine!

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  • Posted

    im sooo upset & annoyed , she was finally given the kidney biopsy which shows their damaged - shed been left that long its no surprise 

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