>> Monday, June 18, 2012
Because of the Bugster's BAD days...I got on the phone. Well, on the Internet and THEN the phone.
First, I searched for Specialists in CFD and FRa and all those new TLA's (Three Letter Acronyms) we use in our house. Time and again I saw the same few names. The one that JUMPED at me was Dr. Stephen Frye. So I set out to find a contact email/phone/Ouija board for him.
I found a phone number and I called.
HE answered. The Doctor HIMSELF answered. Buggar me again! I stammered and then I picked myself up and talked about Bug. I told him what we have found that is new, and what is not so new. What we were trying to understand and then: Can we come see you?
He validated our research and thought we could come see him or we could try another Doc at UofU. I called Glenn after I hung up the phone, IMMEDIATELY called Glenn after I hung up the phone, and he agreed: Let's got to Little Rock!
The appointment desk is closed at the moment so a very nice lady, Sharon, with a beautiful accent gave me the correct numbers and tomorrow..I call.
So, let's detail his suggestions. Suggestions, he was careful to say he was not advocating OVER THE PHONE. It really was everything we had been reading about and then some.
1. Take him to 25mg of Leucovorin 2 times a day (he is doing 10mg 3 times a day now). 30mg is too low. It needs to flood the blood stream to get through the blood/brain barrier and he doubts that enough, if any if getting through. Although SOME has to..he is just too happy.
2. Discontinue the Dilantin and try Keppra IN THE PROPER DOSAGE. He said that 5ml twice a day was too low. (jury is out on this one since we tried it before with no luck...although...if the dosage was too low...)
3. Talk to an Immunologist and see if he needs IVIg to suppress his obviously overactive immune system.
And that's where we start. We can make some of the changes immediately and the others will have to wait for Dr. Spencer. Who, I will be giving Frye's phone number to. He will get a big kick out of it. I think.
We have only seen two seizures so far today...but he is VERY jittery and having a tough time walking. Could be the sickness. He has been tugging his ear as well. Hello, Otoscope...where are you?
Again, we wait. Ugh. But...HOORAY! What a cool day!