I'm not sure if I am posting in the right place as I haven't had much time to learn the ropes on this site. I was so grateful for all the support around my horrible visit with Dr Afrin. He has since kind of redeemed himself in a roundabout sort of way.But that is a story for another day.

I mentioned last time that I was going to try and consult with a good immunologist in town and try to get Dr Afrin to consult with him despite dr Afrins dim view of the possibility of success . And dr Afrin did stay true to his word in a very limited way. We finally had all the testing going round and round trying to get the right tests and make sure everything was on ice and shipped ASAP to the right labs. The test results were read by Dr Afrin and he said if this were his patient he would definitely diagnose MCAS. But it was not his patient (he reiterated for the thousandth time) and he was not able to diagnose a pediatric patient , nor does he have any pediatric colleagues at MUSC that would work with him to diagnose her. That seems very telling to me that none of the drs at Musc will work with dr Afrin, but I'll say nothing!

OF COURSE,that was not enough for my immunologist. He said at this point that some drs acknowledge MCAS as a diagnosis, and some don't but that he was on the fence. GREAT! I wish he would have mentioned that before. ANYWAY, as a result, he wanted to start another whole round of testing and repeat the previous tests to rule out the other horrible things that could produce such elevated chromagranin levels. SO we did ALL that and had her poked and prodded some more. Same results this time while ruling out horrible tumors and cancers.

At this point, it seems he is finally coming around. He just can't understand why the levels would be so high if she doesn't have pheochromacytoma or carcinoid tumors. It seems we are almost on the verge of an MCAS conversion and diagnosis but he wants to talk to Dr Castells and see what she has to say since Dr Afrin won't commit to anything involving a pediatric diagnosis. He says if she backs up dr afrins diagnosis, he would be willing to concede that my daughter may have MCAS and therefore start a treatment protocol where she might be able to get some relief.  

So...... my immunoligist tells me last week that he has a scheduled conference with Dr Castells on Tues. I am so excited, I stalk his office dropping off copies of articles discussing the connection between elevated chromagranin levels and misbehaving mast cells. Then I wait.. and I wait...finally I call the office this week and he says that he has been calling Dr Castells repeatedly and that she is not getting back to him.
So I don't know what else to do. I am appealing to all of you. Perhaps someone has an in with Dr Castells or some advice. We have come so far and jumped through so many hoops. We feel so close to getting a diagnosis. Whatever that really means. But that is also a conversation for another day (whether the diagnosis will really lead to any real solution) I would be so grateful for any thoughts. If I should start a new thread or post this somewhere else, please let me know. Thanks!!!!
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