Wednesday, October 5, 2011

Henoch-Schonlein purpura

So, I'm sure you had to look up the name to find out what in the world it is that my son had been diagnosed with! haha...Believe me, so did we! I'm sure others have wondered how we discovered this so I thought I'd give a little back ground...

Wednesday night Jayden came home from church complaining that he didn't want to walk to his room to get ready for bed. He complained that he was tired and had to run at church for class and didn't feel like it. Now if you know my son, he is the king of pain. "Go clean your room", "I can't my arm hurts sooooo bad!". So when he started complaining I could tell he was really in pain but we thought it was growing pains. We had also noticed two red dots on his leg. Stephen said they didn't look like spider bites so we didn't think anything of it.

Thursday morning Jayden got up and went to school. He said he still felt a little yucky but once he got going he seemed fine. By 11:00 his teacher told me he was complaining that he didn't feel good, looked a little pale and was complaining that his legs hurt. So I brought him home and he took a good long nap.

We had already planned to go on a camping trip and when he got up he said I feel better so we took off. He slept a little in the car and still said his arms and legs were hurting. When we arrived up to the camp grounds he wanted to just sit. It was 9:30 so we basically went to bed still thinking that it was just growing pains.

It wasn't until Friday morning we started to wonder. We got up really early and when I tried to help him dress I stood him up and he fell and said he couldn't stand. He didn't want to move his arms at all. He sat by the fire for a few hours before he went to fishing but we took a chair for him to sit in. Stephen ran to the small store and got him some medicine to give him since it didn't seem to be going away. When it started to warm up I had him take his sweater off and it took him a good 3 minutes just to get it off, he didn't want you to touch him or help. When he got it off he turned white and said he didn't feel so good. He threw up from the pain of moving his arms.

We also discovered at that time his dots had multiplied as well. This photo is when he was going home from the hospital. Some have already healed...
It was Friday around 5pm that we took him into ER because after talking to the Dr.'s nurse, he thought Jayden might have the beginning of meningitis. The meds had kicked in so he wasn't in much pain, was more chatty so we thought he might be getting better. The crazy thing was we had 3 different people looking at him and they didn't know what it was...finally a Dr. came in and diagnosed Henoch-Schonlein pupurpa (allergic purpura). At this time we had no idea what we were dealing with but they did a urine test and his kidneys came back with 1 protein (normal is 1-9) so they said he would be fine, just use meds to help with the pain, otherwise it would run it's course.

We were released and went back to the camp grounds to go to bed. Saturday morning he woke up at 4:30am sick and was sick all morning. It wasn't until about noon that he popped his head out of the tent and wanted to walk around. He would limp and not use one arm and then sat to watch everyone play. (This photo is of him watching the kids play from our tent...poor guy). We packed up camp and left just after dinner. We noticed on the way home that his hand was swollen but he seemed to be better otherwise.

Sunday morning he woke up and took a bath, ate breakfast, seemed to be better. But around lunch time he complained again of stomach pain and by dinner was sick, his knee was swollen so he was having a hard time walking, his arms hurt and he didn't want to be touched all over again. We gave him some meds again since he had gotten so bad.

When we took him in on Monday morning for the pediatric appointment. He could walk but didn't want to. I was pushing him in a wheel chair. He said he was hurting still. We had to go to the bathroom and from walking so much he got sick in the office. Before the urine test even came back the Dr. had spoken with the kidney and intestine specialist and they decided to admit him into the hospital. There was trace blood in his urine, which I hadn't even noticed.

Only a few hours after being on the steroids and IV fluids he was able to eat, keep food down and the pain was gone. It's amazing how fast he has turned around. His urine was red when we got to the hospital but that was the only time. His protein was at 100 and we will find out today where he is at since he's been home.

We had thought it would be a 6-8 week recovery but he seems to be doing better than we expected.

It is so great to see him moving around since he had been laying around for so many days. He is eating and keeping food down after not eating for days as well. At this point we have to see a kidney specialist for awhile to keep an eye on his kidneys, probably for a few years. But otherwise Jayden is doing much better.

I thank all my friends and family that prayed for my little boy.
He has made such a great turn around.
Thank you God! :)