"Suffering the Slings and Arrows of Outrageous Fortune"

At the moment, we are more or less in limbo, trying to make progress but only able to take baby steps towards the goal. It is a little like swimming in molasses – you just don’t get very far!

On the vitamin D issue – still trying to decide which way to go. We need a new pediatrician, who can be our partner in dealing with all of the crap Em is dealing with but it is a matter of deciding where to go. I am leaning towards leaving the practice and finding a new group altogether, but we have to find out who is covered by insurance. We need to move on this issue but I have to find someone who takes Em’s bone health as seriously as I do and that may not be an easy thing to accomplish.

Still waiting on the scooter. It will be four weeks since we talked to the rep and made the decision to go with the scooter. I have no idea how long it should take to hear from insurance, but I am getting impatient – surely a decision will be made soon. A scooter would make a big difference for Em and we are getting tired of waiting. I will contact the rep if I haven’t heard from her this week to see where we are.

We have two upcoming doctor appointments that are on my mind:

October 26 we see Dr. Abonia, allergist/immunologist and mast cell expert at Cincinnati Children’s. We have waited a long time to get to someone who knows about MCAS and, from all I hear of Dr. Abonia, he will be the one. I am cautiously optimistic – I think he will be able to help us, but I am not counting my chickens yet! We have had too many rotten experiences to  go into this one blithely. And yet, I am hopeful that real mast cell treatment will be offered. We shall see.

On November 6, we go to the motility clinic at Cincy. I am barely cautiously optimistic about this, to be honest. I know we need to a GI specialist and, since poor motility is the issue, seeing a motility specialist makes sense. Ideally, we will find a sympathetic ear and help maintaining her weight and general health. I would like a referral to a nutritionist – I could use some help making sure Em’s diet is as complete as possible, within the parameters of all of her food sensitivities and restrictions.

BUT… I am not looking forward to the testing they will need to do, I worry they will not take her problems seriously because she is maintaining (at the moment) and I KNOW they are going to want her off of most of her meds, since many of them can contribute to the problem. We have already started switching her to Tramadol in place of Norco, not sure it is going to help with the GI issues, but that is one easy switch we can make. I am fine with considering reducing (but not eliminating) some of the others – maybe the amitriptyline could be carefully reduced. I am pretty worried about this. Taking away her pain relief is just NOT an option.

I am also worried that they will push for Em to go gluten free. I don’t think gluten is a problem for Em and I am really concerned about removing another group of foods from her diet without evidence it will help and not hurt. Many, many of my friends have gone gluten free and I know it is the current thing but also I know it is not something to do without very good reason. So, I will not do it on my own and I will be very, very hesitant to go along with this recommendation.

I guess I am worried that 1) they will not take us seriously, blowing us off and then where will we be? and 2) they will take it too seriously, ordering invasive, unpleasant testing and throw unnecessary, unhelpful solutions at us. So, pretty much my usual new doctor worries but the stakes are pretty high on this one. We will hope for the best, being prepared for the pitfalls that we may find. It would be lovely if this appointment was awesome, but I will just hope for ‘ok’ and be happy with that, if it happens.

It seems like so much of what we do is wait and that is terribly frustrating. And yet, we are in the process of making progress – one little step at a time. That is something I should be thankful for and I need to remind myself of once in a while!

 

 

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Comments on: "One step at a time" (2)

  1. Going gluten free is no easy decision. Our daughter Abby is not allergic to wheat. But her GI issues were so out of control we opted to remove gluten since it is considered “difficult” to digest especially for GI’s that are compromised from disease processes. It did help a lot to reduce some of the GI symptoms and better then that, has allowed her to absorb more nutrition. As she is healing(almost a year now) we see maybe at some point next year allowing some gluten back in to see how she does.
    If you do go gluten free, we were horrified to read the labels on some of the prepackaged gluten-free foods, they exchanged gluten for chemicals I cannot pronoun. 🙂
    Lots of great recipes and websites out there though which it gobs easier.

    • It is no easy decision – you are so right! I am surrounded by (successful and happy) gluten free folks, so I have access to a lot of resources, info and help if I need it.

      But, I really don’t think gluten is the root of my daughter’s problems. She has a lot going on, for sure, but I just don’t see gluten as a big part of the picture. For one thing, she has no increased symptoms after actually eating gluten. She doesn’t eat a whole lot of gluten, but then again, she doesn’t eat a whole lot of anything these days. From my point of view, poor motility and, likely, gastroparesis are the problem. Personally, I see the vagus nerve as the culprit in these issues and others, but we will have to see what the GI doc thinks.

      So, I am not against going gluten free, but I think it is something to undertake very carefully with a child who is already so ill. She is better than she was this spring and is maintaining her weight right now, so the situation may not need much, if any intervention right now.

      Anyway, I appreciate your comment. I checked out your blog and it looks like you have a lot of gluten free resources. I will keep that in mind!

      Beth

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