Almost 3-yr old girl with HSP - please help!

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Hello all,

So, so glad to have found this forum. My almost-3-year-old daughter has been diagnosed with HSP and I'm just trying to research as much as I can to get myself knowledgeable. Her leg pain started 5 days ago. I have a few questions:

* She experiences severe headaches in the mornings right after she wakes up for about 15 minutes and then it goes away. Has anyone seen this symptoms? I'm feeling so helpless whenever this happens .

* The dr ordered some blood work immediately after they ruled it HSP and everything is great, other than the inflammation. My daughter's joint pain improved - right now she's mostly pain-free all day other than in the evening right before bed time. The dr reassured us that she's improving and that we just have to manage her pain. The next day the rash developed into the darker, larger rash and her face started to swell. Does this mean that the disease was still developing and not actually in remission yet?

* Is it true that abdominal pain typically started 1 week after the rash? So far we are not having any abdominal symtoms and I'm worried that this is coming! 

Thanks for all your help. This is all very scary for my & my wife.

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  • Posted

    Headaches maybe due to another reason and not HSP. 

    Rash on face does not usually develop in HSP.  IT is generally on the abdomen and lower body ( legs). 

    Abdominal pain may or may not be present in HSP. It can develop months later in HSP. 

    Test for any kidney involvement, in HSP. 

    But this does not look like true HSP. 

     

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  • Posted

    First off, I will warn you that each diagnosis of HSP is different from everyone else's. Our doctor warned us that each patient has different symptoms and a different treatment plan. There's only about 200,000 to 300,000 cases reported worldwide. It's a rare autoimmune disease that is being studying but too many questions still unanswered!

    In my daughter's case, she only had the headaches when she was dehydrated. Keeping plenty of WATER in your child is inportant, especially when inflammation is involved. Furthermore, watch what your child eats, a lot of process foods can irriate the body. Though my daughter is in remission as of last month, I still make sure we keep her on a fresh produce, meat, etc diet as much as possible. If she eats processed foods, we allow very minimal. For example, one slice of pizza once a month is allowed...after that we have her pick out veggies or fruit.

    And not to make you worry less, the current blood work may be great now, but that can change in 24 hours. I spent 8 days at the children's hospital. Everything looked okay when we left after the first two days, and we were back in ER and she was admitted to PICU that night, and then they decided three days later to release her, but the night before her potential discharge, she took a turn for the worse and an emergency kidney biospy was scheduled immediately. I'm not trying to scare you, but the doctors do warn you that there's no way to know how the body reacts. Just keep a very good eye on your child!!! If you feel like something is wrong, head to urgent care or ER....follow your gut! HSP lasted about nine months with my daughter, but all time frames vary among patients.

    The best treatment is pain management. At home, OTC pain medications work great. Since the same case of only pain at nightime, I give my daughter pain medication at night when she feels like her ankles are bothering her. Though we are off all medications, our kidney doctor requires we monitor her blood pressure due to the high dosage steroids, but also blood pressure can be a good dicator in how the body is managing infections.

    The best remedy I found for the addominal pain is OTC pain meds and try OTC Ranitidine. The ranitidine did wonders on the days her tummy hurt her.

    I really wasn't trying to make you worry more, but please remember every person's case is different. My daughter was okay one day, and withing 48 hours, her body attacked itself. If you or your wife feel like something is wrong in any aspect, get help! If you have a good doctor, then they will understand your concern, and help you through this.

    Prayers to you and your family! Everyone here whether the patient with HSP or a parent of someone with HSP understands exactly how you feel! I'll be honest, even the word "Remission" last month was not enough relief to me to let go of the worrying.

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  • Posted

    My daughter is 4 and has HSP quite a severe case although she's been stable for 4 weeks now but it left us broken. Hers started just after christmas. It was all very scary. Hers started with the rash. Which was terrible looking. Then that calmed and the rash came back all over her arms and face, it looked swollen and like nettle stings but further investigation showed she was allergic to the HSP which brought on the face rash. She took really sore heads because she was really dehydrated so check for that. She then showed 4+ blood and 4+ protein. This had her admitted for 5 days as when she went to the toilet her urine was bright red with blood. All sounds very scary I know. But I'm telling you this not to scare you but to let you know ALL of that was normal! Although it terrified me and I was thinking the worst. you feel like it's never going to end but it will subside, it's just takes time. Keep her hydrated, rest her when u can (although that's difficult with a 3 year old) go to your hospital or phone them any time you want to, that's what they are there for. My daughter showed bleeding from the kidney and that terrified me but it cleared up after 6 weeks. It gets better. X

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  • Posted

    SO sorry you're going through this! My daughter (5) had HSP for two weeks with swelling off and on and lots of joint pain. She didn't have any abdominal pain, until one Tuesday morning she woke up crying saying her belly hurt and she began vomiting blood. We immediately brought her to our children's hospital and she had intussuception- a rare side effect of HSP. She had 28cm of her small intestine removed. Then had another emergency surgery two days later for a bowel obstruction. Very scary! So if you do notice any belly pain go in immediately. My daughter has been symptom free for two weeks now. We are still getting her urine checked every week for 6 months to keep an eye on her kidneys which are fine thus far. The good news is that I've read the younger they are the better the outcome. Hopefully your little angel will be symptom free soon. But I know it's a terrifying time! Pray and keep faith. I'll be praying for her.

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