6 year old daughter still suffering with HSP 4 years on!
Posted , 3 users are following.
hi, i am new here just desperate for some help or advice after getting nowhere with docs. my daughter was diagnosed with HSP nearly 4 years ago. she is still getting leaky blood vessels in her legs i dont know what is triggering it but its mostly at night when in bed, she wakes up in pain and i have to massage her legs for an hour to get her back to sleep! is this really hsp? the docs and online info states it only normally lasts a couple weeks or months at the most. Has anyone else had this experience or worked out if its linked to an allergy or something as it flares up completely randomly! please help, we are waiting for some more blood results they said her vit D is slightly low right now.
0 likes, 2 replies
melanie11724 annam45704
Posted
hi sorry to hear this my daugther had this 1 year ago very bad, she is now better although gets aches and pains in her ankles and feet and has patches come up in diff types of weather, i went on the great ormond street website and spoke with a man on there who helped out alot try there sorry cant be more help hope shes better soon its awful and especailly when no one seems to know much about it
kc4tea annam45704
Posted
are you still seeing a consultant? they should know about the intensity and regularity about any flares an treat accordingly. keep a diary of flares.and symptoms, try to scale them from 1 to 10 to give some idea of how bad the pain is. keep photos of the rashes. they always went before if managed to see a doctor and these were the only thing i could show him. you may need a chamge in mediciation lifestyle and or diet if the symptoms are recurrent. permanent damage to kidneys and other tisssues can happen if hsp is not brought under control.
it also might not be hsp. misdiagnosis can happen. go and soeak to someone asap! if you are in fhe uk the vascultis society uk is a vreat resources and has a helpline to call.
good luck!