Kiran likes to keep us on our toes.  Always.  Can’t get too comfortable over here.

Over the course of the last few weeks, he has developed a new symptom for us to wonder about: On the right side of his body, noticed after physical activity or overheating, he is getting periods of redness on his cheek, ear, arm, and hand.  Not always all of those areas but always on the right side.  The spots are warm to the touch, blanch normally, and eventually return to his usual beautiful skin color.

Since due diligence is always the name of this mama’s game, I have kept on top of it.  It was first noticed at school after physical therapy, about a week and a half ago.  I got a phone call from the nurse, we discussed it, and we chatted about it a little more in person the following morning.  She was baffled – as was I – but after I noticed more of it that same first afternoon and had another incident over the weekend with the same symptom, I called and chatted with his pediatrician Monday.

She didn’t seem overly concerned since it doesn’t seem to be bothering him and no other symptoms are present.  Her hypothesis – a good one – was that perhaps his heart physiology made it so more blood flow went to those areas on that side.

Except it just started happening – but he *is* getting more active.

Then later in the week last week, I noticed it again – and school noticed it the following day.  Time to email Kiran’s cardiologist to see if our working hypothesis holds any weight.

It doesn’t.  He is concerned enough that he feels we should follow up with a neurologist and maybe move forward with an MRI of head and chest to make sure everything is okay.  There are some syndromes that can cause this uneven, one-sided flushing, due to nervous system damage.  And some of the things that cause that damage are quite worrisome – like masses, tumors.

I am not getting ahead of myself, but I am continuing to do my due diligence.  Dr R is putting in a request for a neurological consult appt with the neurologist Kiran saw after his first MRI in 2018.  He said he would request we be seen in the next four weeks but can’t guarantee that.

And then we go from there.  Because this journey just keeps pushing us into unexpected territory, and there is no way to plan for what life might throw at us.  I hope it turns out to be nothing – just the way Kiran’s body is working right now.  But if it’s something, it’s important for us to know.  So.  It’s a long road ahead, but we journey together.