The thing with HSP is that it is elusive. It can go away and come back. Intussusception can recur. It’s scary and frustrating, and it’s impossible to know how each day will look. Friday night, the first night at home, LD complained of a tummy ache. But I held my breath and he slept (though somewhat fitfully). The second night, MM slept with him in his bedroom. When I woke up, they were both on the couch and MM looked stressed. He told me LD had been throwing up again. We were going to have to go back to the hospital. MM had to go to work, and I just prayed, “Okay, if he throws up again, I’ll take him back.” And he did throw up again. But it wasn’t bile (which he had thrown up when he had the intussusception) so I prayed again and said, “One more time, and then we have to go.” But he didn’t throw up again, and by early afternoon, he was eating and drinking. I finally let out the breath that I’d been holding all morning, and thanked the Lord for His help.
That was Sunday. Monday through Thursday were okay (we had doctor’s appointments and some running around, but thankfully friends were bringing dinners and I only had to watch the kids (forget trying to homeshool)), so I thought we were doing well. We had a very sedentary week, lots of DVDs, lots of books, no running or energetic playing, etc. Thursday we even went to CC, though poor LD fell asleep in class! Every evening, LD’s feet would be swollen and he would be unable to walk after dinner, but by morning, they were always a little better so I thought things were improving.
But by Friday, LD’s rash was coming back all over his legs and his feet were swelling up. (The rash had never disappeared, but appeared to be fading all week.) By evening, LD was crying in pain that his feet hurt him. He had not once before cried that his feet hurt, but this evening he was crying and whining in pain. I gave him his medicines and some Tylenol, and thankfully he fell asleep. He seemed to sleep okay, but Saturday morning, his feet were even more swollen. I called his pediatrician. He ordered some blood work (more pinches) and prescribed a steroid cream to rub on his legs. The dr. did not want to prescribe any more oral steroids (LD had been tapering down on one all week and was now done) because of the side effects of oral steroids. He told me that depending on the blood work, we would be sent to a specialist.
Sunday seemed a little better and then Monday seemed a little better, too. Tuesday was AWESOME. The swelling in LD’s feet had gone down each day, and by Tuesday, there was no swelling all day! He looked great, had a lot of energy, played with the other Littles, and never had any swelling after dinner at ALL. His rash was faded, all signs pointed to HEALED!!
Until Wednesday hit and he started complaining that his tummy hurt. By mid-morning, he was thrashing around and whimpering, not eating or drinking. We hadn’t taken him to get the blood work done yet, but took him to the lab that afternoon. Then I called his pediatrician and he said we were going to need to see a pediatric GI. But when I called the surgeon, he said, “Go to the hospital and have an ultrasound done to rule out a recurrence of the intussusception.” We waited to see if the pain would go away, but when 4 o’clock hit and he was still complaining and whining and crying about it, we knew we couldn’t wait any longer.
MM took him to the ER on Wednesday evening. This time, he did not get a quick pass to the back but had to wait in the ER waiting room for 2 hours. When he finally did get to the back, he had to wait to get an X-ray and the ultrasound. But while they were waiting, they swabbed LD’s throat and found that he had strep throat. Again!!! How that is possible after he was on oral antibiotics and IV antibiotics for 10 days, I don’t understand. But the x-ray and ultrasound came back normal (thank you, Jesus), so the belly pain was blamed on the strep throat. (Yes, strep throat can cause belly pain.)
Since Wednesday (I’m writing this on Sunday), things have been “good.” Swelling has been minimal, there has been no belly or foot pain, rash seems to come and go without rhyme or reason. LV did complain Thursday of a sore throat and had to leave CC in the morning, so once again he is on antibiotics, too. But there have been no other throat complaints, and everyone seems well-ish.
I’m hesitant to proclaim this episode over, as I don’t want to give myself a false sense of security. One of the nurses’ helpers at the hospital told us unofficially that her daughter had had HSP and had ended up in the hospital twice (not with intussusception, just HSP). She said she ended up giving her benadryl, and that seemed to fix it for her daughter. So, we have been giving LD Benadryl since the Sunday after he came home from the hospital. When I tried to stop it, that was when his feet swelled up badly. I don’t know if there is a correlation or not, but we give him two doses a day, morning and night. Besides the strep (which of course Benadryl can not cure), he seems to be doing better. I put this out there for any other parents searching for some solution. I don’t know how long we’ll keep him on it, I’m thinking at least until his rash goes completely away. But if 2 doses of Benadryl a day can keep him from suffering aftershocks of HSP, it is worth it. (I also give him a teaspoon or so of colloidal silver a day, but I’m sort of addicted to that stuff after my Lyme disease. I know for sure that it doesn’t hurt, so whatever good it can do is an added benefit.)
Well, that is our ongoing story of HSP. Thank you to all our friends and family for your prayers and help. I have definitely had to refocus my priorities once again to center around just being thankful for our many blessings, and not putting my “negative” glasses on and only seeing the things that I wish were better or different or easier. Being a mama is hard work, being a homeschool mama is hard work, but as long as I have these beautiful blessings surrounding me, it is worth all the sacrifices.