by Sharon Loichle
My six-year-old son, Sunshine, started having weird rashes around two months of age.
Originally his doctors told me it was viral, then later they told me it was a normal reaction to vaccines he’d been given.
As a parent in the medical field you want to listen to what the doctors say untill you disagree and get tired of the simple answers.
Sunshine started having swelling and fevers associated with the rashes. Countless antibiotics and routine doses of Benedryl or Hydroxazine and Prednisolone became the norm. I swear I should have bought stock in hydrocortisone. Ten days before his third birthday he started to develop another bad rash. The following week he became extremely sick and lifeless, and the fear of losing my son kicked in.
I am very happy a doctor thought outside of the box and the treatment for Kawasaki Disease was started. Unfortunately, that wasn’t the end of our long journey. After seeing 14 doctors, enduring 3 surgeries, and recieving 4 wrong diagnoses (including lymphoma). I found a pediatrician that wouldn’t take no as an answer.
He sent me to a children’s hospital almost four hours away, and at age five he was finally diagnosed with Familial Meditteranian Fever Disease as well as Systemic Mastocytosis. He was started on colchizine. Untill recently the joint swelling, rashes, fevers, and abdominal pain has been at bay. His Rheumatologist now believes he may have another disorder that is causing him to have severe hives for no reason weeks at a time.
Apparently, it is rare for a child to have more than one rare disease, but he said “It’s Sunshine, with his history everything he has had, has been a mystery and rare.” Next month we will be going to a pediatric immunologist for more testing. He is currently having home instruction. Because of the rashes he is unable to attend school.
I am writing our story to encourage other parents. If you are not comfortable with what they are telling you about your child, keep looking. I fought for five years for someone to pay attention to the bigger picture, not the current symptoms. I was being pacified by most doctors and some came out and said they had no idea.
Sooner or later you will find that doctors that will listen–and like me, it will make you cry with relief!
You’re not crazy, I promise.