Hsp nephritis with proteinuria 13year old 6 weeks in
Posted , 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?
1 like, 14 replies
steph24830
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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
kc4tea steph24830
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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
steph24830 kc4tea
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
steph24830 kc4tea
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how do i find contact details for them please? ive tried searching net for info numbers etc but that you suggest sounds worth while xx
kc4tea steph24830
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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!
steph24830 kc4tea
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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
gina66256 steph24830
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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
!
steph24830 gina66256
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hi hun i cant just keep her in hospiyal it doesnt work like tbat she has to be admitted we are back tbeir fuesday & depending on reaults & bp etc they decode to admit or not its so frustrating xx
steph24830 gina66256
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what do you mean internally? is that why the kidney are infected because they burst internally? thank you! X
kc4tea steph24830
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the action of hsp is that the bodys immune system produces immunoglobulin a which is a normal part of the immune system - but it gets stucks / attacks the smallest blood vessels in the body and they rupture. this causes the rashes on the skin and allows the blood to flow straight into the urine. also in the gut leading to gut disorders.
gina66256 steph24830
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the kidneys are in result of high BP . yes the blood vessels in the intestines are bursting which case inflamation in intestines that is painful . my son had a blockage once .
if gastro problems i recommend imaging . the morphine constipates as well
steph24830 gina66256
Posted
morphine constipates? x
steph24830
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urine!
steph24830
Posted
im sooo upset & annoyed , she was finally given the kidney biopsy which shows their damaged - shed been left that long its no surprise