six year old daughter diagnosed HSP two days ago

Hi Sarah,

My 8 year old daughter has had HSP for almost a month. I have found this forum so supportive as We have felt very alone with the Doctors and Hospital. After the first 2 weeks my daughters Co ditions cleared completely, the rash went, the hospital then passed her care over to our GP. Then 2 days after the rash came back, worse than the first time. Terrible stomach cramps, aching joints, hardly eating, cold hands and feet.One day good the next terrible. We have taken each day as it comes. She goes to school when she can manage it 1/2 days mainly. We hired her a wheelchair and it has been a godsend. She uses it only when her legs swell and ache, but it has brought us some normality back to her life and has enabled her to return to school. She eats little and often mainly very bland food as anything else sparks of the stomach cramps. I have also been keeping a daily log to see what triggers the rash. Sofia's initially was on her legs. Now it's everywhere apart from her face, and 2nd time around it's raised and more aggressive than the 1st time. She has regular urine tests and blood pressure checks + regular pain relief. I wish I could tell you that it goes as quickly as it comes but unfortunately it doesn't. Stay strong and positive xx

Hi Sarah,

my son is also 6 and started with HSP last December. He had horrible abdominal pain and also the rash, he didn't have any of the other symptons (no kidney issues so far). With the first 2 flareups we spnt a few nights in the hospital, since he could not eat or drink for 4-5 days each time and got dehidrated. For the pain he was getting morphine. In his case the abdominal pain would present first and a few days later the rash.

He is still taking steroids. The first time I think we tapered them to quickly and pain came back. The second try with steroids we are tapering them off much slower. He is almost off them now. He complained a couple of times of pain, but we are hopeful that it is unrelated.

My recommendation is to go to a doctor that has experience with HSP cases, HSP is not very common so most doctors don't have a clue, the only thing they know is the same couple of pages you can read on the internet on webmd, etc. My guess is that if you posted a question here you already went through all that.

Hopefully your daughter is one of the lucky ones and you can forget about hsp already, but if it comes back it is better to have the support of good doctors that know your history and also know what they are doing and not have to find a good doctor while you are at the hospital.

 

Hi Sarah

My son is 15 and was diagnosed with HSP at the end of Nov 2015. It is a rare condition & normally occurs in children aged 2-11, so he's "old" to get it but reading other people's situations on here it happens to older children too.

He's had a severe case of it, been hospitalised 4 times due to abdominal pain & sickness not eating & becoming dehydrated. He was rushed to another hospital with bowel intersuseption but fortunately did not need surgery in the end. He's had it for 15 weeks now, still has rash on legs & arms this sometimes looks like it's going but then comes back. Joint swelling & pain is most days but I think he's come to accept it & get on with things. Abdominal pain is the worst for him but he doesn't get this as much now. Does half days at school, he's year 10 & is trying his best to get in when he can so not fall behind. He can only take paracetamol as ibuprofen not good for stomach or kidneys (he has protein & blood in urine).

My advice would be to let Sophia play when she feels like, it's important for her to feel "normal" whenever she can. Her body will tell her when to rest. No spicy foods as this can set off stomach pain. Feet up when joint pain is bad. There's not really anything you can do you just have to let it run its course but from reading on here it can take a while for it to go.

It's an awful illness & you feel helpless as a parent. Just being there for Sophia is the only thing you can do, be positive when talking to her. My son is normally really sporty and this illness has made him sometimes feel very down.

Be strong & positive.

Best wishes

Helen

Hi Sarah - I'm 32 and have dealt with HSP for over 15 years. The biggest factor in helping me manage this disease is fish oil. I take 4-5 grams a day. This will help reduce the inflammation in the blood vesselss and reduce the rash. I take a brand that had high EPA and DHA. About 1.5 grams of EPA, 1 gram of DHA. You can also find a burpless brand, so your child doesn't have to deal with the fish aftertaste. Take with meals to reduce stomach pain. Hope this helps.

Ask for a scan of her kidneys. Regular blood pressure and urine checks - weekly and then fortnightly and then monthly for up to a year or when the blood pressure is normal and stable and the urine test is clear of protein and/or blood. Keep us posted. We're a caring group.

HSP is only a description of how the body is reacting.  To my knowledge they can't tell you the root of what is causing it.   In my case there is a very strong correlation to chocolate being the cause.  So one category might be body overreation to types of allergens.   There are likely many others, but many relate to the immune system not behaving correctly.  That's why corticosteroids work in those cases and doctors can tell you about other possibilities.   Make sure you are seeing a specialist.  General doctors send you to all kinds of specialists not able to determine what this is, dermatologists, phychiatrists, ,etc.   but you should see rheumatologists and immunologists.

You certainly need to have her tested to make sure it isn't causing any internal damage and likely since she is small it will only be temporary.

I would recommend plenty of rest and start experimenting with avoiding as many types of things that could aggravate the body like allergens (in my case it is quite likely linked to exposure to chocolate).  

You must have seen the doctor already by now.  How did it go?

It's been close to two weeks now... our doctor didn't seem super concerned. She said we needed weekly urine checks and that she wanted to see Sophia every two weeks to check her blood pressure. Sophia has had daily swelling and pain somewhere on her body - usually worse at night. Her first round of spots faded but are now back and bigger than before. They look like giant mosquito bites and then turn into big bruises. She even had a burst blood vessel in her eye which was unnerving for me but the doctor wasn't concerned. Her spirits are good but I am struggling to stop obssesing over every spot and ache and pain she has!

Hi, my 8 year old daughter was diagnosed with HSP 2 and a half weeks ago and she is still experiencing the rash, swelling of the ankles and knees and intermittent stomach ache. She has also had some nose bleeds. Doc has said she is not worried about her as last BP was normal and bloods and urine were too. I'm not sure if it will just run its course or if I should be pushing them more. It's a horrible condition! I hope your appointment went well X