What you find when you aren't looking

>> Tuesday, August 21, 2012

You find that no one around these parts knows how to treat Folate Auto Antibodies. Huh, really?

Yep.

So this is where it gets super cool and reaffirms that we finally have a great team for Bug. His Immunologist called the other day and left a message that, true to form, Vonage transcription service screwed up but the gist is this:

What dosage and of what medication will help him the most? I need help so I can help him.

Cool, right? Hearing a Doctor say: I dont know but I want to find out, can you help me?

Truly, I have NO idea. And after a morning (who are we kidding I have been looking this up for a few weeks/months) of searching, I found only anecdotal evidence of advanced therapy, meaning MORE than the folinic acid. Bummer.

So, I called Captain Doctor Cool's office and they said: Bring in what you want him to look over and we will give it to him. Great.

So I did that. And while I was there, himself walks out and says: Oh, there she is. Now THIS makes me nervous. I ended up giving some paperwork on Folate Auto Antibodies to Dr. Dan and then Spencer and I discussed the remaining stack of paperwork.

Back and forth, give and take, agreement and more agreement and a plan of action that was little more than: I'll email him and you call her and we will see what we can come up with.

Still hadn't given up, either of us, and I went to Bug's school, gave him his meds, marveled that he picked the Ear card when asked what we hear with (it was 50/50 so really, is it THAT impressive yet?) and then left for home. Trying to be tough. I ache to help this child. I really want my Bug back! I miss him a lot lately. It may be watching Ava develop and do the things he used to do that has me missing my first born. I try not to dwell, but for some reason, today was a tough day. Not all are like that, but this one...was.

AND THEN...

The Captain Doctor Cool emails me and it says: "In addition to folinic acid therapy, a dairy free diet and 5-10mg prednisone per day could help bring down the titer. IVIg infusion has a transient dilution effect."

Well now, that was fast. Again. Wow. Ya see, the whole key here is getting the right people in the game. Methinks, Bug has an AWESOME team now.

Thanks Spencer! You are a King among men. But don't get cocky. I am pretty sure I can take ya.


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