Two months for my 13 yr old with HSP. Going crazy!!
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Hi everyone. I'm writing from the U.S. This is the only discussion group that I've found on HSP. There have to be more people suffering from this but they haven't found where to vent yet! 
My daughter, 13, was diagnosed with HSP on Feb. 3rd. Previous to that, she had the flu and a respiratory infection and was given an antibiotic. The rash showed up first on her palms. They were like little cuts covering the whole palm on both hands. Later that day, her legs, ankles and butt were covered as well. It kept coming and coming. The rash on her legs lasted about 2 weeks, with just a handful here and there on her legs and ankles. The rash on her hands still come and go.
In addition to the rash, she had severe joint pain in her knees, ankles, elbows, and hip, as well as nausea, headaches and abdominal pain. The joint pain is better but she does still experience it frequently in her knees and ankles mostly. She is still having headaches too. Nausea is the biggest complaint now. It’s been two months and she is still miserable. She hasn’t done a full day of school for over two months. At this point, the rash keeps showing up in her hands and it bothers her to hold a pencil!
I feel awful for her and wish I could help her. Ibuprofen and Tylenol does not help but she does sometimes get some relief from Alleve. Sometimes I wonder if a lot of it is nerves or her reacting to the stress of it. If I mention this, she thinks that I think she’s faking. I know she’s frustrated. I’m frustrated too. The nurses at her school are losing patience with her showing up there every day even though we have a doctor’s note. They don’t get it. When is this going to go away??
0 likes, 23 replies
barber883 Beanie926
Posted
dowieslovechild Beanie926
Posted
My 12 year old son developed the rash on 18th march, diagnosed 20th we've been backwards and forwards to the hospital ever since. His rash is predominantly on his legs, his ankles are affected the worst by the swelling, he has had abdo pain and vomiting ( this appears to have settled) he even had a couple of spots on his eyelids and a bloodshot eye. He's had blood and protein in his urine thankfully further tests revealed there is nothing serious going on. A couple of times he's had to have morphine to control the pain.
As others have said it has been an extremely mentally and emotionally draining time. Its devastating as a parent to watch a lively, sporty fun loving child deteriorate in to a frustrated and angry shadow of their former self. It is a comfort, having read some other experiences, that it does get better with time and plenty of rest.
May I wish you all the speediest of recoveries xx
Beanie926 dowieslovechild
Posted
HSP is a tough thing to experience made even worse because people don't know anything about it. It sure is a long road but there is a comfort to know that other people know what you are going through.
Sending good thoughts your way that your son is feeling better soon.
LyndaLou7 Beanie926
Posted
My daughter had HSP for the first time in Thanksgiving weekend & had it until the second week of January. She had severe joint & stomach pain & our doctor had her alternate Tylenol & Motrin every two hours. It didn't eliminate all her pain but she did feel a lot better. He also stressed for her to keep her legs elevated & lots of water. I hope you find something that helps her!
My daughters HSP came back in the middle of February but the symptoms were not nearly as bad. She had some joint pain but didn't miss any school this time. She still is showing some blood & elevated proteins in her urine but that is her only symptom now.
I hope she feels better soon!
Beanie926
Posted
Just an update. My daughter seems to have slightly turned a corner. I don't even want to say it because every time we think she's doing better, she goes backwards again.
This past week, she went to school every day and stayed all day. This hadn't happened since January. She seems to be able to focus on other things other than her HSP finally! She has enjoyed time with her friends and has done some clothes shopping with me. A month ago, this never would have happened. She seems in better spirits (most of the time) too.
What is still going on.... She does still have nausea a lot and still is eating a bland diet. Greasy foods or foods with a lot of fat and sugar make her feel sick. She is also still having joint pains but just not as much. She takes Alleve and that usually helps her. The rash... She is still getting spots on her legs and the palms of her hands daily. Again, not as bad as before but still frustrating. Her biggest complaint is the spots that show up on her feet all of the time. It's mostly on the bottom of her feet with a lot on the toes. These spots are painful. When she does any kind of physical activity, there will be more spots and her feet and ankles bother her. The walking itself is better, it's the after effects that are the real problem. That part is still lousy because she finally wants to do more and she loves to take walks.
She is now complaining of a feeling like something is caught in her throat when she hasn't had anything to eat. She is also having a little pain in her chest area sometimes when she breathes in. I'm not sure if either of these are related to the HSP but they are now something else to watch. The doctors are still checking her urine through August.
All in all, I can finally say my daughter is "a little better". It's scary to say that when I've thought it before and it has come back in full force. It's been almost three (long) months since she was diagnosed. I'm praying that she is on the road to recovery.
I am am also hoping and praying that you all find some better days soon. This is such a tough and strange disease.
LyndaLou7 Beanie926
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My daughter's legs still get red & itchy if she runs too much but thankfully when she puts them up for a while they have gotten better.
Praying your daughter continues to recover!
Beanie926 LyndaLou7
Posted