4 yr old girl with HSP (Australia)

hi Erica, my daughter was also 4 when she was diagnosed with hsp, after 8 long hours in a&e with suspected meningitis and very confused Dr's we finally had one student dr come in who had luckily just done about it at uni! we were sent home with advice to go to the gp in a week for another urine test and assured her swelling would go down within two weeks and told it was VERY rare to cause implications. we went to the gp as advised and her protein in her urine was 3+ on the dip test so we were rushed into hospital where they discovered it was very high (3+ means over 300 and we were told hers was over 10,000!!) they decided to monitor it for a few weeks in the hope it would come down but she spent the entire time in agony, we were told by all consultants DO NOT GIVE IBUPROFEN so it was horrendous not being able to help her at all, we ended up having to carry her everywhere her limbs were so badly swollen and painful. this all started in November. ..by January she was booked in for a kidney biopsy as her protein levels hadn't decreased at all, she had many overnight hospital stays, blood tests weekly and was on medication to help her kidneys which she was on for a year and it made her very sick, she was monitored for a year on that every two weeks then last year the protein had finally gone and they decided on annual check ups saying it's incredibly unlikely for any more problems to occur but she will need lifetime monitoring as she is now prone to kidney problems later in life....two weeks ago she complained of leg pain so I took her to the gp who tested her urine and sure enough it was 3+ again! we're currently waiting on the hospital test results. we had to keep her away from anybody infectious with anything as this stops the body fighting the hsp so I would advise against school for the time being, if my daughter just had a cold her symptoms massively worsened, she missed around 5 months of school and is now top of her class, be sure to liase with them and get work for her to do at home and I truly hope your daughter doesn't end up with it turning into hsp-nephritis like mine did, I wish her a speedy recovery and send you big hugs! there is a light at the end of the tunnel and my daughter is still fine in herself despite this set back, they're tougher than we think!! I hope this hasn't worried you but just thought you should know the extreme end of the scale.

Dear Erica

Your daughter should be monitored for protein in the urine and blood pressure for at least 6 months.  Protein is a sign the kidneys are working too hard.  Treatment is steroids, but because of the risks associated with them, they are only used if the protein in the urine can't be controlled.

We have found that anti-histamine helps with the rash and fatigue.  Try nurofen or paracetemol in half usual doses for the abdominal pain.

Lots of fluids and TLC, and let her have a rest when she needs to - so I would say, go into school for an hour or so, but come home again or have a rest, so she can build up the friendships.

Thank you for your replies

Hi Erica,

I higjly recommend you to find a doctor that has experience with HSP cases. We saw a few doctors that did not have a clue how to react/diagnose and made mistakes.

For myson it has been a 2 month long jurney already and whoever tell you that it will resolve in xx time most likely hasno experience.

best of luck

 

Hi Erica, we tried both ibuprofen and acetaminophen (panadol). the acetaminophen is not effective on him and ibuprofen works ok.

Unfortunately that alone did not work so his doctor started him on a steroid (prednisone)