HSP

Hi Nicola, I really feel for you, that's exactly how my daughter started. We are now 6 weeks in and during that period of time we have had many ups and downs, unfortunately mainly downs. All of your daughters symptoms are apparently normal with thus condition. After the first week, Sofia's symptoms and rash completely disappeared, and we thought we were clear, but then 3 days later the rash came back, only this time it was horrendous. Bright red but raised like hives, stomach ache couldn't walk because of the swelling and pain in her legs. We have been back numerous times to the hospital, Sofia has not passed blood in either her urine or stools, so that's good. We have let Sofia dictate what she can and can't do, she has only been going to school when she feels strong enough, we have kept her food very bland as anything else triggers off stomach pains, I have also been keeping a log of everything she eats to see if anything triggers off the symptoms again. The thing that has become our life saver has been a wheelchair, it gas given her some normality back into her life and she managed 3 full school days last week. There unfortunately is no time limit to this horrible condition, also someone suggested on this forum fish oil. We have started Sofia on it, but too early to tell if it's working yet, but her rash is calming down. Things will get worse before they get better. Make sure your daughter has regular check ups and don't take no for an answer. We refused to go to our GP as they knew nothing about HSP and it was a complete waste of time, which in turn stressed me and my daughter and trust me you will feel like you are living in a bad nightmare so adding stress is not a good thing. Let your daughter do things at her pace, inform everyone around you with as much information as you can especially her School. Stay strong, this Forum has been my lifesaver xx

Hi rachel & nicola,

Really feel for you both. My daughter then 12 developed hsp...14 months ago and we are just coming out now of the worst relapse. She has had 3 weeks off school and can still only manage half days. Today is a bad day so again she isn't able to go on. The worst bit this time is the excruciating stomach pains. In week 4 and feeling desperate for her ...and me. Wishing your children well. X

I really feel for you, it's heart wrenching to see someone you love struggling. My sister in law is in paediatrics and she advice us to keep her as mobile as possible, we still have the wheelchair but now have crutches too, as they said that not using her legs will just make the swelling worse, it's been hard as her feet and legs are so painful, I notice that when she rests her rash seems to be worse especially at night, we make her sleep with her legs raised which helps with the swelling and the redness seems to calm, apparently it will get better, so we just hang onto that. X

Oh Rachel that is awful for you and her. It is devastating to watch your child suffer. We are 5 weeks into this relapse and actually it has been worse than the original onset. The cramping has been relentless for 5 weeks...she has managed a couple of mornings at school in 5 weeks which has been awful as she is more depressed missing her friends and I dread the mornings as I have no idea what her level of pain will be that day. There seems to be such little help or advice available...she continues to suffer and i continue to tey and reach the consultant!!!! Right here, right now....the light at the end appears to be a very long way away. :0((

Oh Bren, I am so very sorry to read about your poor granddaughter....how absolutely horrible. Stay strong.....it will get better....you sound like a really good support for her and that is what she needs. Wishing her and you all the best for a speedy recovery.

steph, I feel your pain, we ask ourselves every day, when is this going to end and nobody seems to have any answers. We found getting her the wheelchair and crutches a massive help and she has been able to cope with school, 4 full days she managed this week!!! She does suffer in the evenings. The second relapse has been far worse than the 1st, I have been giving her Calpol and Nurofen, when it's at it's worse, the swelling in her feet and legs has been dreadful and they are so cold, we make her walk around to help circulate her feet, but who knows if what we are doing is right. Xx

Hi Rachel and other suffering parents, what a journey we are on! We now appear to be on rash no 3. I thought rash no 1 was a shocker but rash no 2 was angry and showed much larger clusters, rash no 3 is even more widespread, (feet, soles of feet, ankles, lower and upper legs, buttocks, knicker line, arms) and is bumpy, painful and at times itchy. Calamine lotion is helpful as is nurofen, paracetamol & multivitamins. Plenty of rest appears to be most helpful with daughter feeling at her best first thing in the morning. We have experienced chronic fatigue, chronic tummy pain, sickness, complete loss of appetite for a foods or fluids and inflammation of joints. I have been following these discussion forums closely now and have taken the lead from a few people to acquire a wheelchair, I was hopeful that we wouldn't actually need to use it, however, we did take it for a test drive this afternoon as daughter couldn't even manage a short walk without being crippled in pain. Sleep quality and appetite is slightly returning but I wonder how long for, I am now more prepared and feel I better understand the complexities of HSP and realise that I am not alone. X

Hi Nicola

I'm sorry to hear your daughter is suffering with this awful disease & wonder how old she is & how long she has had it? My son is 15 years old & has had it for 17 weeks now. Rash is still as bad especially on legs, up to lower back, comes & goes on arms. He is still struggling with joint swelling in legs & has to rest with legs elevated when bad. He has been making it into school more over the last couple of weeks, going in everyday even if it's just been for half days. But then I think the more he pushes himself it just brings on the swelling. Still has protein & blood in urine. Has not had severe abdominal pain for a while now & hopefully this will not reoccur. He has lost two stones over this time but think he is starting to put weight back on, he is also having multivitamins & has an actimil drink everyday to protect his stomach. We take each day as it comes.

I wish you & your daughter all the best and hope she soon makes a full recovery.

Helen

Hi Nicola and others following this forum.  Our 7 year old is in her third week of HSP.  She has good and bad days. She has been trying so hard to do the things she would normally do, but at times she just can't. I have been trying to read everything I can find on HSP so that I can help her in any way possible.This forum and everyone's participation has been very helpful. I think just knowing we are not the only ones struggling with this disease helps.  When I was first told she had HSP, I was clueless to what it even was. Then being told that there is no known cure and no known cause, I felt helpless. For anyone just beginning their nightmarish journey with HSP, don't let it overwhelm you.  Learning all you can about the disease is the best tool to help you understand what your loved one is going through and how to help them get through it.