KOLTER'S STORY
& HIS DIAGNOSIS WITH HSP
KOLTER'S STORY
It all started on September 1st, 2020. Kolter was at Kidz Club where they help him with distance learning. His father (Kane) picked him up to notice he was limping towards him. When the teacher and his dad Kane examined his legs they found that the left one was swollen. By the time I came home he was unable to walk on it. Rushing him to the ER that night was nerve racking. Did he break his leg? his ankle? But there was no bruising! After some x rays the doctor told us that there were NO broken bones found but a osteolytic lesion was found on his femur. (googling that will scare the heck out of anyone). The doctor concluded that Kolter must have torn a part of his achilles tendon and needed to take it easy for a few days.
September 2nd, everything was fine. His leg was better but he did develop some random bruises overnight. He went to school as if all was normal. But on September 3rd everything changed. I received a call from his Kidz Club saying I needed to come get him because his hand is very swollen.
Driving like a bat out of hell to the school I picked him up and his hand was MASSIVE. I have a photo to the right. Instantly I took him back to the ER where we spent the next 7.5 hours. They ran countless blood tests, urine tests, xrays, and ultrasounds. But everything was coming back normal. Within those 7.5 hours he developed a bruise on his inner ankle and within minutes it was 3 times the size of the other. WHAT WAS GOING ON!
The next morning I received a call from my husband that the rash had showed up and they were going to start treating him for HSP. This sparked them to also run tests for any and all other autoimmune disorders as well. My heart sank but at the same time, we had an answer. He had gone through so much and now we were getting somewhere!
He was finally released on September 6th, 2020 where he was so excited to come home! But a whole new struggle came about. This is what they call a flare. And they can last for a month or months. The doctors don't know what bring them on and the only way to help is to give him anti-inflammatory medicine and try to help him work through the pain.
HSP is a blood vessel disorder where they swell and being to leak. The blood vessels in his skin, intestines and kidneys are affected. This causes them to swell and become painful. The kidneys are not able to filter properly so we have to keep him super hydrated and his intestines swell causing major stomach aches and pains.
The rash will fade and he will get better. But through this whole process he has kept a smile on his face. Been super nice and respectful to the nurses and doctors, trying to help him. He is so strong and he will get through this flare up. All we can do is pray it will not come back and he can live out his life without this horrible process happening again.
The local ER ran out of tests and ideas to try so they decided to transport us to Downtown Sacramento Pediatrics in hopes we may get answers from them. Kolter and I got to ride in an ambulance with two AMAZING Emergency Medical Technicians that took great care of Kolter. Photo at the top! And yes the bear in his arms was from the great staff at the Emergency Room.
We got to Downtown Sacramento around 9 pm where the EMT's parked and waited for Kane to come say Hi to me and Kolt because with COVID-19 we weren't sure they would allow him in at anytime. Once we said hello to Dad they wheeled us in and immediately started more tests. Drawing blood from a 4 year old... NOT EASY!
The doctors and nurses worked tirelessly to try and figure out what was going on. All the while Kolters limbs would swell and shrink back to normal then bruise as if he was breaking bones. Let me say this, watching your kid be in pain and not know what was going on.... Is a form of hell I would never wish upon anyone.
A few days of being in the hospital I started to do my own research. Sitting in there I read so many different medical diseases, allergic reactions, bug bites. ANYTHING. I then came across something called Henoch- Schonlein Purpura, commonly referred to as HSP. It is an autoimmune disease. Reading that my heart sank because he was swelling, and bruising which is common with HSP...
When the doctor came in next I started asking questions like crazy trying to figure out if it could be it. His response was "He doesn't have the kidney dysfunction or the rash. So we haven't truly considered it." Feeling completely frustrated I called my husband and asked if we could switch off for the evening. He drove down to the hospital that night and stayed with Kolter while I went home to our 3 month old to research some more.
