You may or may not remember our journey with a random new symptom Kiran started exhibiting in January of this year. It started with a phone call from the school nurse. Since then, with lots of documenting with pictures and circumstances, looking at every possible reason, and working our way through Kiran’s pediatrician, cardiologist, neurologist, endocrinologist….
Today, we finally saw the dermatologist and had a follow-up with his neurologist. And, after the resident asked questions and saw pictures and discussed with the dermatologist, the dermatologist came in and immediately said “I think I have a diagnosis!”
And it seems we do.
At first, I was relieved and excited to have an answer, a name, a diagnosis.
And then, I kinda realized….let’s just add to the list, right? It’s a bit overwhelming. A bit grief-inducing. And of course, with another diagnosis comes a path that must be journeyed.
It’s a rare neurological disorder. It may have to do with his underlying genetic condition, or it may have to do with nerve damage sustained near the parotid gland during one of his surgeries…or some other trauma. Though it is not a serious concern since the flushing has been happening less frequently in the past several months, we do have to have some imaging done to rule out any lesions/tumors/trauma. We will also have to do some blood work and urine analysis…so, things to look forward to.
Ultimately, since it doesn’t seem to be bothering him, and we haven’t been able to pinpoint a trigger (sometimes with Frey’s Syndrome, a specific food can trigger the reaction)…as long as imaging doesn’t have any surprises for us, it could just be a totally benign condition. Just something to live with and not worry about, unless it changes in some way.
That is the journey my brain is choosing to take tonight. The totally benign, no-need-to-worry, we-finally-have-an-answer journey.