I am… happy.
Unfortunately, not my usual feeling after a doctor visit, but I can honestly say today I am pretty happy. We saw the allergist today – a follow up to continue the discussion about mast cell disease and to talk about the results of the testing we had done.
First of all, I had previously dropped off several articles, including a copy of the Driscoll Theory, for the doctor to read before this appointment. I really think that helped – she seemed much less skeptical and more on the same wave length as we are. It was definitely the right decision to share the information I had, so we could have an informed discussion about a pretty nebulous subject.
So, her feeling is, that she doesn’t have enough information to make a good decision and that the whole issue of mast cell disease is out of her area of expertise anyway. Without a positive tryptase level, she can’t really do much. Gastrocrom is very expensive and she feels she just doesn’t have the evidence to fight insurance. And, she doesn’t want to add another medication to Em’s long list of medications if it isn’t necessary. She wants us to go to a mast cell expert to really get some answers.
Also, she wants Em to go to a GI doctor – she was a bit surprised that she wasn’t already seeing one. The abdominal symptoms/ food sensitivities are real and she wants to make sure we aren’t missing anything. She specifically mentioned Eosinophilic disorders. I, unfortunately, am familiar with that, having read about it in several posts on the EDNF message boards. I hope that is not what we are dealing with, but I agree that we shouldn’t necessarily make assumptions that it isn’t. She mentioned a scope to rule things out, which I am also not thrilled with. However, I am fine with the idea of a GI doc. A) we will be able to rule things out, which is always good. B) I feel very good about our chances of getting to try Gastrocrom, if we actually get to a GI doc. I hear good things about one down at Cincinnati Children’s and would like to give her a try. So, I am very comfortable with the track we are on per the allergist.
The other interesting suggestion came from the 24 hour urine test. It was meant to rule some nasty stuff out and it mostly did. However, apparently there were some odd results. She said they were nothing to get worked up about, but she is concerned enough to have the test repeated. If the levels remain elevated, she will refer us back to the pediatrician and said seeing an endocrinologist would be a possibility. I am ok with the idea of seeing an endocrinologist because I think it is evident that Em’s has some adrenal issues and maybe more. I would be shocked if we don’t find that she is dealing with adrenal fatigue. Of course, it will only be beneficial if we get a specialist who actually is up on such things, but we have to start somewhere. I told her we would see if Dr. Tinkle wanted to refer us on to all of these specialists within Cincinnati Children’s and she thought that was a great idea.
Let’s see, what else… In addition to doing the urine test over, she wants to do some allergy testing, so she ordered some blood work to start with – will check for allergies for eggs, milk, soy, wheat, beef, chicken, pork, turkey, peanuts, pecans, oranges, and latex. We will see what that shows. Again, I am not opposed to doing some testing – I think it is a pretty good idea in fact. She said the test is only partially accurate but it is a start and it would be good to know if she has any real allergies – if not, that leads us back to the idea of mast cell activation syndrome causing the abdominal symptoms.
Finally, she happily agreed to give us a script for an Epipen, for the latex allergy. I think we will all breathe a little easier now – it certainly will alleviate some of Em’s anxiety over having a bad reaction.
So, all in all, today was a really productive day and I felt heard by her. She was very compassionate and is going to try her best to help us get some answers.
Feels good to actually be happy after a doctor visit! Doesn’t happen too often, so I am going to enjoy it!