Wanted to give a bit of an update, since it has been awhile since I last posted.
On the mast cell front, we see the allergist again on February 8. In the meantime, the tests have been negative – still waiting on the results from one test. We are supposed to get some blood work done during a severe flushing episode, with the goal being to catch an elevated tryptase level. But we live 45 minutes from the hospital so it is a challenge to actually get to the lab in time. For the last three weeks, we have been trying to trigger a convenient episode so we can make it to the hospital lab in a timely manner and get a solid result. Over Christmas, when we were out of town and couldn’t get the test done, Em had several severe episodes. Since we have been trying to trigger an episode, she hasn’t reacted at all. It is getting a bit ridiculous, tbh. Foods that normally would trigger a bad episode after a couple of bites are doing nothing, even when she eats a lot. We will try again come Monday and see what happens. I like to think of myself as a fairly intelligent person, but I am being consistently outsmarted by my daughter’s mast cells. She thinks it is hilarious and we are entertaining our friends and family on facebook with our regular posts about our failure to get a reaction.
I dropped some articles off to the allergist – including a copy of the Driscoll Theory. I feel certain that she will read them, but have no idea if the info will sway her to understand where I am coming from. I am still hopeful that this doctor will work with us to get this stuff under control.
Em has had several days of bad headaches – the last 3 days her headache has been an 8 out of 10. That is concerning. I initially thought that it was the weather was causing the worsening headaches – 2 bad weather systems went through at the same time. But, the weather has passed on and the headaches haven’t, so I am thinking she needs to have her Diamox dosage adjusted. I am keeping an eye on her but I think I will be making an appointment to see our favorite physicians assistant and see what he thinks. Her dizziness is a bit worse and her vision is blurring again, so we need to figure out what is going on. We also see the opthamologist in Feb, so we can get his input on whatever is up.
So, we are back in a holding pattern, trying to figure out what is going on and make some progress. Just the way EDS goes.