hsp in children - doctors just guessing

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my little girl is 3 and a half. She has had tummy pain for over six months. In June we noticed some small spots - minor - the tummy pain was backgound - she was just slightly off par..the doctor just said virus and that it would pass. He didn't add the pain to the spots. The pain seemed to be persistent without the arrival of the spots. We were conccerned and went to a consultant and he suggested a tummy ultra sound scan. We couldn't afford that privately and the NHS wouldn't do it.

n september she was ill with a flu and then presented the classic HSP symtoms from the feet to the buttocks - sometimes her feet were so sore she had trouble walking.

Registars and Emmergency doctors didn't diagnose only the consultant did are a third visit to A&E. The other registrars and doctors really don't understand HSP and probably last studied it at college. Since then she has had rolling bouts of tummy pain and spots.

THe origninal private consultant said that the tummy pain can come without the presentation of the spots - and he said that it appeared to be recurringing HSP.

Every visit to casualty is different with different doctors pronouncing verdicts - I just want a scan to eliminate any other cause of the tummy pain. I just brought her in over Christmas - more tummy pain and diahorea - the registrar was annoyed I brought her in. She said that diarohea is not a symtom of HSP. SHe would not recommend any scan or examination and was dismissive. I read that other victims has Colonoscopies to check for bowel damage - how common is that kind of examination...I really think that you needed to be treated by a HSP specialist. - interested to hear your thoughts?

D

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  • Posted

    You sound as though you've had a terrible time with your daughter. I think you're right, there seem to be very few doctors who have any direct experience of HSP or how to handle it.  My daughter (16) developed it in October 2015 and although the rash has not reappeared, the original bruising remains and she has been left with severe joint pain, stomach pain and fatigue.  We are now having to treat this as Chronic Fatigue syndrome following the virus. We were advised to rest a lot when she had the HSP diagnosis but that's harder to monitor in a 3 year old.  What are the doctor's doing to alleviate the symptoms?    If the tummy pain is the most serious symptom then you could ask for her to be checked for coeliac as this can also develop following HSP.

    Hope things get better for you soon- it feels grim now but it will improve- honest!

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    • Posted

      So sorry to hear about your little girl . My grandson who is almost three has just been diagnosed with HSP . The first signs we noticed was when he contracted  tonsillitis  he was quite poorly then shortly started to get a rash  which started on his back then spread all over his face ears chest and legs  some came up like small blisters ( though this doesn't always happen )  the doc at local out of hors surgery said it was viral , didn't give antibiotics  , but a liquid steroid for inflammation and sent him home , and instructed to give calpol for temperature . He recovered in a week and the rash subsided , then about two and a half weeks later  he complained his foot was sore , and he couldn't walk on it , by the time we went to local out of hours again , his other foot had started to swell . We couldn't see a doctor as we hadn't phoned before we arrived . We saw a nurse who couldn't under stand why he had an injury without  an obvious accident . She gave him ibuprofen and waited for half an hour to see if swelling subsided , but it appeared to get worse . She said we needed to take him to Exeter A and E  as she didn't think it was a sprain or break . After going through triage with another nurse ( who seemed to think it was a suspicious injury ) and then a houseman  both who seemed to be puzzled , we then saw a registrar who asked the right question , and found out about his previous rash ( the rash is the obvious indicator in HSP )  and he was sure it was HSP . By the time we saw the consultant  who confirmed HSP he'd had blood  and urine  tests . The Urine test is essential to make sure there is no Kidney involvement .. My grandson had blood and protein in his urine ( undetectable by human eye )  which indicated that his kidneys were under attack as well as his ankle joints by which time had developed into large bruised spots . He was kept I. Overnight  and his blood pressure and urine was monitored . The next day he was allowed home as no protein present in urine . We were told ibuprofen should not be given if there is kidney involvement as it can make it worse . But  give calpol  for pain . They sent him home with dip sticks to test urine with every week  and if protein present or blood in faeces or urine to take him straight back to hospital . The  HSP can lead to kidney and or  bowel being attacked ( not always but in a small number of cases )  so close monitoring is essential .  He still has small flare ups , and so far has lost a little bit of weight . I can see your post was over a year ago . How is your daughter now ? I hope see is over it with no further side effects 
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  • Posted

    So sorry to hear about your daughter. HSP specialists don't exist moronic registrars and junior doctors with no experience do in abundance! If not at Northampton General where my 14 year old was vommiting for 8 days solid and all the registra wanted to do was send her home ir cure her by telephone. There is NO cure or medicine for HSP. Steroids can ease the pain in the stomach but that's it. It really is time, tonsalls removed if it was triggered by tonselites or with my daughter food allergies/tollerence tests. The kidney side is easier to treat with known meds. Whishing your daughter a speedy recovery.
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  • Posted

    It does seem that most medical staff do not know what HSP is and this is really hard if you are suffering from it as it seems you need to know everything about it to explain when you have to go to doctors/hospitals. I hope you get your wee girl sorted
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  • Posted

    I agree with you I find it hard having to explain myself each time I go to the hospital not many have heard of this illness so I really do feel for you
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