This is my first time ever joining a support group, but I need some advice and suggestions.

Hi

Sorry to hear your daughter has HSP, how old is she? From what I have read on this forum the younger you are the quicker recovery. It's more common in 2-11 yrs but my son got it last November aged 15 & is still battling through it.

When joints hurt best to rest & keep legs elevated, we have found ice packs can help. Blood in urine suggest kidneys are affected so no ibuprofen just paracetamol. You basically have to take each day as it comes which is easier said than done. My son was very sporty & has finally just got back in to it & can now walk to & from school, something he hasn't done since getting this awful illness.

If you want help with anything else I will try by best.

Helen

Hi Kylea so sorry to be the bearer of bad news. My daughter is now 13 months into this horrible virus and sadly the doctors are useless. There is no cure and most seem to wait until the kidneys give up as Nephrotic syndrome is on their computer with instructions how to cure it. With regards to HSP we have been through 3 hospitals all more incompetent than the last! They say time is a good healer, if you child is under 8 you might be lucky. HSP needed a trigger to wake up like cancer, the question is what triggered yours. Our's we think was either Glandular Fever or a sudden allergy to yeast and yeast extract. We see no light at the end of the tunnel!

Hello Kylea,

My daughter who is 15 has had HSP for nearly 3 years and I remember how very worrying and stressful it was at the beginning. Thankfully they are referring you to specialists. No two cases are the same of course and sometimes it takes the doctors time to work out if it is isolated or something else is going on too. But what I can tell you in our case was I just stopped believing it would get better because everytime I did after a few days of improvement she went backwards and it was like being on an emotional rollercoaster. Instead we decided to think about it long term and whilst the improvements have been slow they have definitely come. Our daughter like yours was very athletic - she used to play tennis competitively and be in all the sports teams but it stopped overnight. Last month after nearly 3 years she hit her first tennis ball with her brothers.  So don't lose hope there looks like no light at all at that end but I really hope for you things improve and you find a fantastic specialist.

Hi Kylea, I am very sorry to be reading these posts of new cases of HSP and that your daughter was hit with it.  My daughter is 10 and was diagnosed 2 months ago also.  She has had symptoms for nearly 3 months.  If your daughter has blood in her urine, High BP and trouble breathing it is her kidneys.  She should be seeing a nephrologist immediately!! In the meantime drinking at least 64oz of water daily to keep kidneys functioning best. Since she is having these symptoms she is probably feeling too tired to play and and run like my daughter as well.  This disorder is extremely hard on a childs joints and even if they aren't swollen they are probably still feeling some pain or tightness at least this is true for my daughter and many other posts I have read about children with the same issue.  Zoey was enrolled in dance, tae-kwon-do, and just finished fall ball softball.  However, she is unable to do any sports now because the swelling and pain is just too much.  She now also needs to rest at recess with her legs elevated to keep swelling down.  You are not alone, I am also a single mom.  It is the hardest thing not knowing how to help make them feel better. The only thing I know to do is to hug her tightly and let her know I am sorry she is going through such a terrible thing and that I am praying for her to get better quickly.  I encourage her to continue to be tough as she has been to do all she can and make her feel as comfortable as I can when she is in a lot of pain.  They will get through this difficult thing as we will with them!  Stay strong Momma! If your daughter is old enough to read or type/text I am happy to let my daughter share her side of this as well I believe the support for them could bring some comfort to such an uncomfortable disorder.  You are both in my thoughts and prayers! I hope to hear back from you soon.

Hi Kylea, I was diagnosed with HSP when I was 8 and I am now 18. Symptoms may come and go throughout the rest of her life or it may go away all together.

Personally, I have been dealing with excruciating arthritis pain since I was diagnosed and at this point I don't think it's going away. When I was diagnosed I also had blood in my urine for about a year and that was when they discovered I was in kidney failure, (saying this only to help you, not saying to scare you) this could also be what your daughter is experiencing. Luckily, I was put on a strict diet and medications ( I believe a certain kind of steroids) and my kidney function resumed to normal. Of course I am still constantly monitored because there is still active disease in my system. The disease had worn down my immune system and I do get sick more often than I would like, but at least I am no longer in kidney failure. The tiredness is completely normal, it wears you down and honestly I really reccomend the rest. I cannot say anything about the nose bleeds or blisters. But I had also experienced the trouble breathing and high BP, I believe it was because of the beating my kidneys and immune system had taken so I suggest it may be side effects from that. 

My low patch with HSP lasted for about a year and a half. Once I started getting better I was better for good and returning to school and my sports. I currently play volleyball on my University team, so once her condition gets better expect her to be eager to return to her sports. Besides the arthritis and occational red tinged urine I am just fine. Of course I am now a woman and not an 8 year old so I don't freak out that often when my urine has blood in it, but I do question it if it comes at an odd time and make sure to look at a calander. If it continues I am always sure to visit a doctor just to make sure my kidneys are all in shape. Of course I am almost always wrong, but it's better to be safe than sorry. 

As for your specialist I cannot even think of where to begin. I live in Canada and was referred to a specialist only 2 hours away and I was lucky. Of course be sure to have a doctor check out her bowel and kidneys because those are two main problem areas that are CRUCIAL when dealing with HSP.

Your daughter mostly just needs your support. She is feeling worn down and most likely in a ton of pain everywhere. She doesn't understand and needs you to fight for her to get the best medical care for her condition. I remember my mom crying and praying every night for a new kidney to magically appear when I was at my lowest point, constantly on the computer trying to learn more, booking appointments and researching treatments for my condition. She is probably really scared, she needs you to assure her everything will be okay.

I hope I at least helped some.. 

Kenzie.

I have had hsp for over a year now, I'm 32, it's been very frustrating for me, I get the rashes bad, and bad stomach pains, along with joint pain, I'm on alot of medications.. I see alot of specialist.. I lost my kidney function a month after I was diagnosed. meaning I have dialysis 3 x a week, they say to me live day by day but never have any answers, everytime I seem better, I go do stuff that day and then I'm sick again, I'm always going backwards, blood infections, getting sick, severe pain, blood clots, etc... feels like it's gonna never end, very hard to stay positive at times, I also used to be very active and now I barely can do anything

My daughter, 3.5 years old, was diagnosed with HSP this past Sunday.  It has been so bad as of late I just feel completely helpless.  It started out with large bruising and swelling around her feet and ankles and then progressed from there.  Now it is all the way across her back, stomach, and chest.  The only thing left to not be impacted is the face, arms, and hands (although the hands have definitely had the swelling).  Multiple times a day it is like she comes under attack.  Last night it was so intense she was yelling out for the doctor to help her.  My daughter does NOT like the doctor. There is nothing they can do and I give her Tylenol, but it seems to do very little for her.  

I am so sorry for everyone who is experiencing this, whether it be you yourself or a loved one.  I am so very sorry for you kylea84979 and I hope to read that things have improved for you in the near future.  It is hard to take hope when it seems like forum after forum is not about recovery in the 4-6 week time frame, but managing this as a chronic disease with a question mark in place of an end date.  As I read these posts trying to understand, it seems there is a reoccuring theme, the duration and severity is far underestimated by the medical profession.  It is an eye opener just as the severity of the pain has far outweighed what I anticipated and what I was lead to believe would occur.  

Thank you all for listening and helping me put into perspective what is happening.

Oh my I'm sorry to hear about your little girl! My son has also been diagnosed with HSP. What kind of specialists have you guys been referred to? Nephrologist?