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On November 7th 2019 Owens school called to say he had a stomach ache- we weren’t really sure what was up, but he came home early. That weekend he asked to go to the doctor instead of to birthday parties- so I took him in and we were sent to the ER to check for appendicitis. He had his first CT scan there- which didn't show anything and we were sent home. The next day his symptoms got worse- he started vomiting green and was in a lot of pain, so we went to the ER at another hospital, had another CT scan and were admitted for observation. They were calling this intussusception- a painful disorder where your bowl telescopes over itself causing lots of pain. The next day Owen was eating and seemingly doing better so they sent us home. The next day his symptoms came back and we went back to the ER- we were transferred to the University of Iowa Stead Family Children’s Hospital anticipating surgery.
In the ER at the University we noticed little spots on his feet and elbows- they ruled out surgery needs for intussusception and admitted us for follow up. We stayed there for 14 days. During that time his symptoms got worse- he was vomiting and in constant pain. He was put on a morphine drip, he stopped eating and a feeding tube was put in. We learned that he had pancreatitis first- and they were daily ruling out other diseases. his little spots on his feet and elbows got bigger, and started to spread. They did a biopsy and that is when we learned he also had an autoimmune disease called HSP- Henoch-Schönlein purpura. A simple explanation is- his body is sending little fighter cells called IGAs to different parts of his body- once there they attack the blood vessels, cause those vessels to inflame, and then explode/leak. This was happening in his skin, and in his stomach- which was what was causing all the intense pain.
Generally HSP doesn't require much treatment. But, one area it can attack is the kidneys. We started to see signs that it was attacking his kidneys and he was sent for a biopsy- which revealed it was indeed in the kidneys. He started on steroids- which helped stop the pain almost immediately. Once the pain stopped he was able to start eating again- and we were given a discharge plan. We were released 2 days before Thanksgiving.
Owen was put on a medicine that is given to transplant patients to help stop his body from attacking itself. Along with long term high dose steroids, and some other medications that were thought to help with HSP. We were hopeful that soon we would get him back and this would just be a bad memory. Unfortunately his kidney numbers got worse- we were in almost daily contact with the peds nephrology department at the university. His kidneys continue to spill too much protein into his urine- way too much- and not keep enough in his blood too. After several tests it was decided that starting a low dose oral chemo treatment was his best course of action.
HSP does not have a cure. It is an autoimmune disease. They don’t know what causes it, and usually it’s a minor 6 week illness. Unfortunately for whatever reason- Owen got some bad luck and we are in the small percentage that will be dealing with it for a lot longer. All we can hope for is the medication stops the body from attacking the kidneys and it goes dormant soon. You can read some general information about HSP here-
https://kidshealth.org/en/parents/hsp.html I started this carebridge page on day 4 of his chemo treatment because so many of you have asked questions, and it’ll be an easy place to make updates for you all to see. Can’t wait to share all the successes we have
Selfies 🤣
Passed out after a long day of appointments at the children's ...