"Suffering the Slings and Arrows of Outrageous Fortune"


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!



Comments on: "So…happy?" (3)

  1. Michelle said:

    It is a relief to heat that you had a good visit. It is refreshing to hear a dr say “This is beyond my area of knowledge” rather than just bluff their way through.

    I do want to mention, as a mom dealing with alot of the same issues, that I have been very unhappy with the gi division at Cin Children’s. After 18 months of treatment there my daughter is no better gi wise- they have run out of ideas and are sending her to Nationwide in Columbus. Nationwide has a much larger, more equipt gi division. I wish I had known in the beginning and just started her there. I have spoken to one other mother who is dealing with the same situation.

    We are pleased with cardio and genetics at Cin and feel confident in the care she receives. I really wish I felt the same with gi- but I don’t. Meg will have one last test done at Cin next week (ordered by Nationwide) and then we will be done with them. It’s a relief.

    I wanted to give you information so you can go into it with full disclosure when making your decision. You can message me on Inspire (KYMama) and I will give you the names of the dr/nurse we are particularly having issues with.

    A child with EDS is considered to be “high risk” for gi scoping and he just looked me right in the eye and said “I don’t want to do it”. After 6 days of bright red blood out of her bottom. Sorry- I’m starting to rant…

    Praying for you to have the strength you need today. (and me too) We’re off to our local hospital for blood work, iv fluids, and observation.


    • Hey Michelle,
      I will definitely message you for those names and I appreciate your help. I have found that our care down at Cincy is hit and miss. We tend to have better care locally, but we don’t have many pediatric specialists Dr. T is great, everything else is a toss up. Mast cell specialists are pretty hard to come by – if they are all out of network for us, we may as well try the one at Cincy. I have my doubts that he will be able to help, but we have to start somewhere! I have heard good things about one GI doc down there – we can exchange names. I think it is so powerful that we parents can communicate about who is helpful, who to avoid and are able to be prepared for what would otherwise be unpleasant surprises! I guess I am hoping that, because Em’s GI problems are not nearly as severe as some, a GI doc will just give her Gastrocrom and be done with it. I am probably living in la-la land but, hey, a mom can hope. I know that the GI doc I am thinking of gave Gastrocrom without blinking an eye to a girl with similar mast cell symptoms (but much more severe GI issues than Em), so I am really hoping!

      There is so much to worry about and deal with every day! We will have had 4 doctor visits in less than 2 weeks. It is so draining! Good luck with your stuff today – will be praying for you!

  2. […] So…happy? « Our Life with Ehlers Danlos Syndrome. […]

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