4 year old daughter HSP, please help

They haven't given her anything, they keep telling me she needs to get better on her own

Doctors won't give her anything, they are saying they don't want to intervene with her incase she suffers side effects. I feel like nothing can be worse than what she's feeling right now though

Hi there

We are in Glasgow Scotland.

I cannot believe the hell you are going through. That is unreal. It's just so hard, I feel no one knows what they are doing.

My daughters kidney function at the moment is ok they tell me. I've just tested her urine this morning and it's 4+ blood and 3+ protein. She has woken up with a sore tummy. I don't know what to do for the best. If I go to hosp they won't do anything anyway, so do I just keep her here until her next appointment on Tuesday or do I go up and sit there all day for them to test her and send her home anyway or worse keep in her and test her every couple hours.

I am worried sick as clearly u are aswel. I wish this was just a nightmare and wasnt happening

We actually found out why my daughter haD been vomiting well before HSP showed it's ugly head, she suddenly became alergy to yeast and yeast extract. It took my family to work that out as the doctors weren't interested. See if there was something in the padtop few months that you daughter had before HSP, cough, colds, immunisations etc. With the problem at the moment steroids are the only relief from the tummy pain.

She's only just started tummy pain yesterday and the vomiting started yesterday.

She's flushed looking this morning. I need a doctor to step in and fix her but they just keep checking her BP urine and blood and then not doing anything. Are they waiting for kidney failure before they act?

I'm just so scared. I'm terrified I'm going to lose her. She's my middle child and have a boy on each side of her. I can't live without her. She has never been the best eater but loves fruit and yoghurt. I really wish I could help her. She's had no rash for 6 weeks, no joint pain. She looks terrible tho, like she's lost weight, she looks grey in colour, she's so tired. Can she die from this? A million doctors tell me a million different things. I can't stop crying because I'm so terrified.

It's such a confusing situation to be in and I can't imagine how terrifying it must be to have your daughter going through this.

I'm not sure if anyone has ever died from this but it is very unlikely that will happen.

The internet is full of people's stories and a large proportion of the ones on patient are people who have suffered with the most extreme cases which is why they tend to be reaching out once they go past the time period quoted on the internet as a normal length of time to have it .

If you look at the vasculitis websites, the vast majority of cases spontaneously resolve within the first 3 to 6 months.

If her symptoms get worse or persist, there are a number of options for treatment which she will be able to have that will protect her kidneys.

The positive thing is that the doctors only want to monitor at the moment. Is she being seen by a rheumatologist or a specialist who regularly treats patients with vasculitis.

There is a Facebook group called Vascultiis UK that you can join and everyone there has a range of types of vasculitis and are very helpful. John Mills runs Vasculitis UK and they have a helpline you can call with advice on getting referrals and second opinions if you feel the doctors looking after your daughter aren't doing enough.

There is also a Facebook page called Young Vasculitis UK which has a large proportion of parents/patients with HSP who are happy to offer advice and share stories and tips.

Hang on in there! Wishing your daughter relief soon x

I do hope you too get better and this horrible thing goes away for you and my baby x

Sam,  I'm not surprised they have not given anything yet due to the age of the child.  It seems like it is more dangerous the older you are.  However, I personally wouldn't accept that either.   My doctors would not give me anything and I went to other doctor and asked for prednisone taper and that immediately stopped my case of HSP.  Every case is unique. Eventually I went to an immunologist and he was good at understanding at least what HSP was and agreed I should take Prednisone (for my specific case).  However like someone else mentioned above, mine must be of an allergy type.  They discussed suddenly developing an allergy to yeast and in my case I suddenly developed an allergy to chocolate so until I figured that out and stopped eating it, I would get worse each time I ate chocolate.  I have no idea like most people what causes them but at least we know a Type of cause is a sudden allergy response to something you were not allergic to before.  To be extra cautious just read up on what types of foods can be allergens and just avoid as much as you can while she gets through this.  I don't think an allergy test (of the skin type) may correlate to what the body treats as allergen in HSP response so it comes down to trial and error.  Again, this is only for one of at least 3 or more types that are HSP.  HSP is really just a category of symptoms in which the overactive immune system destroys various body systems due to it's reponse.  That is why the prednisone which suppresses the immune system worked so well in my case.  I suppose it is like a benadryl for allergies as it seems to immediately stop the body reaction.  I have to reiterate again that mine is just one example and unfortunately no doctor knows what works for patients as their are no real documented causes specifically to my understanding.   As stated, at least she is young so odds are this will pass and since she is young, she is also less likely for it to reoccur later in life.   Please research the web for prednisone hsp study and you will wonder why more doctors aren't recommending early treatment with it.  Yes it is in the steroid class but it's not body building, it is kind of the opposite but you are supposed to take a taper which goes like high dose that trails off smaller and smaller each day (and never suddenly stop taking it as it is a shock to the body to do so).  If it doesn't work at first, then just taper off and not go back on it.  The people that use it long term would have bad effects as the break down of the muscles will lead to having more fat, depression, etc.

Anyway, if it's a different type maybe dapsone or many other types that people have discussed here could also help.   Please, research, research, especially these forums and be overly cautious with eating a careful balanced diet.  One needs plenty of water and rest because putting extra strain on the body just makes things worse.   Clearly anything that triggers the immune system will elongate or cause relapse.   Keep us posted and stay positive giving your child lots of close attention.  We suspect that our bodies respond positively also to optimism and closeness from others.   Good luck and keep us posted so we can all learn from your experience as well.

It is very rare that they would affect other organs like lungs and heart, but theoretically it is possible in very rare cases. 

Rocky, yes, that is why seeing an immunologist is so important.  They specialize in this area as mine did.  The scary part is that knowing that you can see what is happening on the skin makes you wonder what is happening inside the body which is why the testing is so important and the checkups.   In my case I had mostly the rash, and feet really sore, but also it just wiped my whole body out and I was exhausted, when the rash got really bad a couple times, my joints got really sore and I was unsure what happened internally.   When I first had this happen over a decade ago, I say a skin doctor and they told me they had no idea but it would likely cause me permanent scars.  It didn't.  It is so frustrating because not many doctors know about this so you need a specialist that at least knows what HSP is.  As I have noted in previous topics, even accidentally putting a piece of cake in my mouth with a tiny chocolate ball and spitting it out caused a rash episode after I knew I was allergic to chocolate.  When one doesn't know the cause and it can be due to so many things it is frustrating, especially when HSP just describes symptoms and causes aren't really discussed or documented.  I just read the Prednisone study again and see what others say and it just upsets me that drugs like this aren't recommended earlier, especially when it shows that early treatment leads to better outcomes.  Again, each case is unique but when comparing the symptoms of the disease against any side effect of taking them especially only a short time, it needs more consideration and studies done by the medical socieity.

They do not even know how to test HSP. Everything comes out normal, when you dont have any other health condition. The only diagnosis is made by a biopsy of the skin or kidneys, if affected, and that too this special biopsy called immunofluorescence should be performed within 48 hours of the new skin lesion.

Nope she's had nothing

Good luck.  The biggest challenge I had is that Doctors do not like suggestions or research being given to them by patients.  In my case I had given them all the information I knew and they even said they would research it (they did not even know what it was) and further they would not prescribe me Pred and instead prescribes some useless topical agent which I did use and did not work.   So just be really careful how you present the findings to them.  It may even help to just print out the prednisone HSP study paper and just hand it to them for their viewing pleasure  

Here is a snippet of the second publication on it "RESULTS

Of 201 articles retrieved from the initial literature search, 15 were eligible for inclusion. Corticosteroid treatment did not reduce the median time to resolution of abdominal pain but did significantly reduce the mean resolution time and increased the odds of resolution within 24 hours. Early corticosteroid treatment significantly reduced the odds of developing persistent renal disease. In addition, although the results were not statistically significant, the prospective data suggest reduced odds of both surgical intervention and recurrence." from Effects of Corticosteroid on Henoch-Schönlein Purpura: A Systematic ReviewPamela F. Weiss, MD,a,b,c James A. Feinstein, MD,c Xianqun Luan, MS,d Jon M. Burnham, MD, MSCE,a,b,c and Chris Feudtner, MD, PhD, MPHb,c,e

Thanks very much for that, it's really appreciated

You are welcome.  Please keep us posted.

And to reiterate one more time because I almost forgot myself how important this statement was,

" Early corticosteroid treatment significantly reduced the odds of developing persistent renal disease."

I'm writing that down exactly how you have said it, so I don't forget. Thanks