We saw Dr. Abonia for a follow up yesterday and, he was just as nice as he was the first time we saw him. If he seems a little preoccupied with the possibility of EoE and seems to be not at all focused on MCAS, I am able to tolerate it and give him time to, hopefully, get on the same page I am on. After all, we are delving into the strange and rare in either case and EoE will need to ruled in or out before we can even start to address the possibility of MCAS. He seems to be not really considering it at all and I remain convinced it is the problem, so we shall wait and see. (Although, in our report, it still mentions investigating both MCAS and EoE, so maybe it is still in his mind more than I think.)
He confirmed that Em’s bone scan is normal, by the standards Reid uses. So I interpreted that to mean he just had to accept their reading of it but could not verify the accuracy himself. He was as shocked as I was by the fact that Em’s vitamin D level has increased as much as it has (from 6.1 2 months ago to 25.9 now) but is still concerned and feels she needs a higher dose of supplementation. He said to mention both her bone scan results and vit D levels to the new GI doc we see on the 10th, but I think I will see what I can do about it before then. [Apparently, the only pediatricians on our insurance are in the office I am currently unhappy with. But, our other option is to go with a family doc and I am willing to take that step at this point. Andrew has one in mind that he trusts to manage a complicated case like Em’s, so he is going to try to talk to him. So, that issue is on hold but is being dealt with.] He also suggested that she get with a dietician, through the GI doc, to help figure out the vit D deficiency and other food issues.
Dr. A was pleased that the hydrocortisone cream and vaseline has improved the rash on her neck. He suggested the vaseline and I later suggested the cortisone cream because that is what we used to use on her eczema when she was young and it worked well. At some point a couple years ago, Em decided that the cortisone cream was pointless and stopped using it. At which point, the rash got worse and worse. When she grudgingly tried it again at my suggestion after Abonia made a big deal of the rash, she was horrified to see how quickly it worked. But, beyond being aggravated that she could have kept the rash in check for the last couple years, she is happy to be rid of it and to have a way to manage it. He is tentatively labeling it as eczematous – which, from what I have read, just means it is a rash related to plain old eczema. I think that is likely the rash she has had on her face, but, since it is gone for now, couldn’t get an opinion on. He wants her to keep on with the vaseline and limit the use of the cream as much as possible.
One thing I liked was that he wanted to know what we wanted out of this visit – my first thought was to say that we were just following orders to follow up. Apparently I have had too many doctors not feeling the need to make an appointment worth our while to understand the concept of ‘let me do more for you’! He is still convinced that the flushing is likely caused by EoE and not MCAS, but he pondered out loud as to what else we could try to help address the flushing. He suggested Singulair, which I was happy about because I knew that was the next MCAS treatment. That was actually the one thing I wanted to get out of the appointment, but was tiptoeing around. He talked about the really negative side effects (ie – suicide risk) and I was not thrilled with those. But, it seems logical to give it a try and we can just keep a very close eye on her as she tries the new med.
He wants to see us back a week or two after we get an endoscopy, which hopefully the new GI doc will order. It all feels very up-in-the-air which I don’t love, but at least we have a plan going forward and he was great about suggestions and listing things we need to talk to the new doc about.
One funny thing is that he started muttering about us doing things before he could even suggest them – like the Zyrtec and Zantac and the hydrocortisone. What made it funny was that I wanted to try Singulair before he suggested it – it was on the list of questions I had written down. So, I tried to make him feel better by not mentioning I thought of it before he brought it up and let him think it was his idea. 🙂
So, it was another good visit and we have a plan going forward, and we feel good about making some progress.