Henoch-Schonlein Purpura (HSP)....is very uncool.

After a fun filled summer, we were all getting back into the routine of school...literally three days into the new school year. First grade for me and first grade dual language for Luca. Lots of changes for everyone and big adjustments. The first Sunday after school started Luca was playing in the yard and came in complaining that his feet hurt. When he took his shoes off I noticed that the soles of his feet were bruised. I thought this was odd, but I attributed it to him wearing shoes that didn't fit properly to play football with dad that afternoon. We had him rest for the evening, and sent him off the next morning for his 4th day of school. When he came home from school, he was limping a little and when I checked out his feet I was surprised that his ankles were swollen. I assumed it was an injury, but it seemed weird that it was both feet and ankles. I had him ice his ankles, and I noticed some red spots on his legs that looked like bug bites. I didn't think much of it because he had been in the yard all weekend and bug bites were not uncommon. By the time Santi got home from work we were getting concerned because he wasn't putting weight on either foot. Santi took him to urgent care, and I was shocked when he texted me and told me the doctor there thought it was an autoimmune issue and wanted bloodwork right away. He had done a urinalysis there in urgent care that thankfully came out fine, so he said it would be okay to just wait and do the bloodwork at the pediatrician's office the next morning. We were completely freaked out, but trying not to let Luca know. The doctor in the urgent care center had given us a diagnosis of HSP, but we needed the pediatrician to confirm. Sure enough, the pediatrician was convinced that it was HSP. It was a relief to have a diagnosis and a relief (after lots of research) to find out that it was something that would go away on its own. BUT...it could be up to 6 weeks or more before he is symptom free. And literally the only thing we can do for him is ice and Motrin for join pain and swelling. After the initial diagnosis, the next week was pretty rough. He missed two and a half days of school due to pain and swelling (and doctor appointments), but he toughed it out the rest of the week. By the time he got home each day he was really in pain, and it was heartbreaking to see him go straight to the couch after school, barely able to walk. His knees and ankles would be huge, and the rash was spreading to his arms and all the way up to his stomach. We are now at the end of week 2 with this illness, and I would like to believe it's getting better, but it may just be that we are managing his pain better. This past week we made sure to communicate directly with the nurse at school so he could go lay down in the afternoons and get ice when needed. His teachers have been super supportive too, but I know he doesn't like to complain so we have had to have them encourage him to take a break and sit out from recess. Which is also very difficult for him. Probably more difficult than being in pain. We also started giving him Motrin first thing in the morning before the pain and swelling start rather than waiting until after school when he is already suffering. It has also made his school day much easier and he's been able to enjoy recess again. Today we tried to skip the Motrin since it wasn't a school day, but he was in pain by the afternoon again. No swelling this time, so I am hopeful we are headed in the right direction. I hate seeing him in pain, and bummed out when he can't get up to run around and play. And I hate seeing him covered in this angry red rash with the bruising and discoloration. He even had bruising on the back of his ear!!! Besides all the obvious frustrations of this illness for everyone (especially Luca), there is a constant worry that new symptoms could appear or he could have kidney issues as a result. There are complications we could run into that are rare, but we have to watch out for them. There is also the frustration of knowing there is literally nothing we can do for him but wait it out. No "cure". Steroids are an option if it gets too unbearable, but we don't want to go that route. There is also very limited information out there regarding HSP since it is so uncommon. This has also made it feel very isolating. So, here we go into week 3 and I am praying that we see relief within the next week. I will be so relieved when he is symptom free and back to his normal self again. And I decided to blog about our experience with HSP, because one thing that has really helped me through this is to read a couple of blogs by other moms who have been down this road with a child who is now fully recovered. But there were literally only 2 blogs I found. I am hopeful that this blog post may help someone else who is struggling through this illness, or if you have any experience with HSP I would love to hear some encouragement!!! I will continue to update on his progress, and I am hoping to soon write a post saying that he is 100% better and we are off to ride Go Karts in Indy (which is our plan when he is fully recovered)!!