"Suffering the Slings and Arrows of Outrageous Fortune"

Monday we saw our Neurology PA, Brian for a follow up. A pleasantly boring, uneventful follow-up compared to past appointments.

There was nothing pressing to discuss. No big worries to hash out. Just mundane things like renewing prescriptions. He asked if I had anything new of interest from the internet and I was shocked to be able to say that I really didn’t. First. Time. Ever.

We did talk about how the Pain Management NP was reluctant to increase Em’s Neurontin at our last appointment, saying the dose was maxed out for a pediatric patient and that Lyrica was not approved for peds. (Which I am pretty sure is nonsense but it wasn’t worth arguing about at the time.) Anyway, she told me to talk to Neurology, which I finally had the opportunity to do at this appointment. Brian basically said there is no reason we can’t try Lyrica and that it very well might be beneficial but we made the decision to not switch her meds right now, with the play and everything going so well. He gave us a script that we can fill when we decide to make the change. Maybe after the holidays?

He was, of course, pleased to see her doing so well. We told him how she is doing well enough to actually be in a musical at the theatre and he was impressed. We invited him to come on the night that the hospital has special tickets for the employees and told him that Em would be able to say hi afterwards if he stuck around. Of course, this is one of the benefits to having doctors at home instead of hours away!

He ordered a Vitamin D test and we were able to get the thyroid test at the same time, with one stick, so, all in all, it was a good day.

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Comments on: "Neurology Appointment" (2)

  1. Melissa said:

    I stumbled upon your post when doing some research on Ehlers Danlos, so I’m not familiar with your while story, but is she already gluten free? There is a lot of information about gluten causing the symptoms you described. You can just google “gluten and (whatever you want to read about” and see what you come up with. Gluten free (for at least a year!) is definitely worth a try, if you aren’t trying already! Casein (milk protein) free too, if you can manage it. Here is just one sight about damage from gluten – there are many, many more out there. Hope this might help!

    http://celiacdisease.about.com/od/GlutenAtaxia/a/Gluten-Ataxia-Symptoms.htm

    • Hi,
      Thanks so much for commenting! I know gluten is a big issue for a lot of people – particularly in the EDS community. My daughter is not gluten free – she has so many food intolerances that eliminate so many foods from her diet that I am reluctant to remove yet more foods without guidance from her GI specialist. I have many friends who are gluten free, so I am familiar with the whole process. But, I am rather doubtful that gluten is my daughter’s issue, although I could be wrong and at some point in the future, we might decide to pursue an elimination diet.

      Thanks for sharing your information – even if it doesn’t directly help my daughter, it very well could help someone else who is reading!

      Beth

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