Surprising is not the word

>> Wednesday, March 6, 2013

There was a bit of concern leading up to this latest appointment for the Bugster, it appears it may have been all for naught.

Why the concern? Because I hadn't heard from the good Doctors in weeks about treating Bug's FRa. We were left with: Dairy free and Leucovorin. Thanks, been doing that for a while now...let's move on.

So, we went in there thinking: we are going to head out of state. NOT an option anymore.

What we left with was everything we wanted and a little more.

Before each appointment, Glenn asks me: What is your goal?
And we work out the details. This time we decided that we wanted the following things:

An EEG - so we can begin the taper of Lamictal and have a baseline by which we can compare once the Lamictal is removed. His last EEG was somewhat interesting. The tech let it slip that it had never looked so good, since she had been taping him. Glenn and I were thrilled. Thank you Leucovorin? Or was it Dilantin? Now that he is off the Dilantin, we need the EEG to compare so we can openly say: Thank you Leuvocorin. Dr. F looked at the EEG notes and raised an eyebrow. He said: It does show a good improvement. Hooray! (The Hooray is me not the Dr.)

An LP - Once the EEG is established, the LP needs to be done to see where he is with his 5-MTHF production. You will recall, that is what was lacking in the Bug Man...he was low on that Neurotransmitter. It will be a year in May so we need to see if the Leucovorin has raised the level enough or if we need to up it.

FRa Plan - This one was not dependent on Dr. F...he is not a specialist in this area but we wanted him to light a fire under the specialist. She should have learned enough about it in the last 2 lets get on this already.

Those are the big ones. Here's what we were given:

An FRa Plan
Lamictal level (how did we miss this?)

We asked and he said: Valid ideas all. And how about we see what his Lamictal level is like now that the Dilantin is gone? Dilantin reduces the efficacy of the Lamictal so...he may be higher than he needs to be on the Lamictal now.

We were thrilled. Glenn and I got the kids out in the car and the FIRST thing I said: Holy crap that was cool.

He will be getting the EEG next Monday because we couldn't do it that day and the LP will be scheduled soon. We had the Lamictal level pulled (yesterday) and Dr. F is going to call the Neuro Rheumatologist and tell her to move forward with the treatment. Bug is doing so well, we need to take this one step further. He was very pleased with Bug's progress. Which is great because so are we.

Still saying it: Holy crap that was cool.

- Posted using BlogPress from my iPad


Jennifer March 6, 2013 at 9:19 AM  

So happy that you are getting what you want from the doctor and while most of this is over my head, I'm glad things are looking improved with Bug!

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