Saturday, January 30, 2016

A Fat Lot of Good Intentions

Life continues to sweep me away with it and I continue to not update this blog. I'll try to throw out another six months worth of life now, likely scattered, much out of order and missing large chunks. ;)
We were told last year that the CBD oil would be available "in the fall". It wasn't. We then heard "by the end of the year". It wasn't. Next we were told January. That didn't happen either. The latest is that "production should be beginning in February". As far as when the end product will be available, we don't know. My guess is March, at least. It is a little frustrating, but I'd guess we aren't as frustrated as the two local suppliers who are trying to get on their feet. They have to jump through a lot of flaming hoops and they are working hard on doing so. We will wait and, in the mean time, we are trying other things.

We have seen the seizures (sz) grow in severity over the past several months. When we switched to Dr Goretzke (Dr G), we tried increasing the ONFI, but it didn't help, so we dropped him back down to his previous dose. Our next medication attempt was adding Depakote to his other medication repertoire. It didn't seem to help much either and with possible side effects such as sudden liver failure, we weened off that one. Without knowing how long we'll have to wait for the CBD (and there is nothing that says it will help either, though there is some evidence that it might), Dr. G suggested we consult with an epileptologist. Dr. G is a general neurologist whose practice covers a multitude of neurological issues. He thought it might be beneficial to speak with someone who just works with seizures. We met with Dr Fenton early last week.

After going through a brief history, we began to talk options. We settled on one med and then realized it is a sulfa based med and Lucas is allergic to sulfa. We then took a few more minutes and Dr Fenton suggested another med, one, surprisingly, we've never tried. It is related to Tegretol which Lucas took many years ago. This one is called Trileptal. We began it last Thursday night and then increased it to a morning and bedtime dose as of last Saturday. He's only been taking it for a week and he is at only one fourth of the dose Dr Fenton would like to reach based on his size, but we have already begun to see improvements. The sz seem to be decreasing in both frequency and severity! Until last night, I was beginning to get a little hopeful. Marc and I have been talking about possible vacations for the kids spring break. I wasn't so concerned about the wait for the CBD, because this seemed to be helping.

Getting Lucas into pajamas last night, I noticed a slight pinpoint rash on his torso. My heart sank a little, but I thought it might possibly be related to his wearing a new Benik vest, a tight-fitting vest with metal supports in the back to encourage his correct posture. (We got this after meeting with Dr Anderson, the orthopedic doc, in late November. We were concerned about Lucas developing scoliosis. He does not have actual scoliosis, but does have postural scoliosis and slight kyphosis. Dr Anderson felt confident that we could correct both with the Benik brace.) I thought that the rash might simply be a heat rash. This morning, however, it has spread from torso up his neck, and down onto his arms, hands, legs and feet. This is not a heat rash. We will be stopping the Trileptal. Monday, I will call Dr Fenton and figure what to do from here.

I cannot deny my heart has dipped a few feet below the surface of the water. I always am hesitant to raise my hopes and ever mindful that my true hope does not lie in medications, doctors or procedures. My hope lies in the Lord Who made Lucas and loves him more than I do, but still...

There is much more to say, but rather than wait for another opportunity for me to sit at the computer for a few minutes, I'm posting this. I'll try to get back to it soon with updates on what's next and tales of Lucas the cowboy (he rides Cappy, the wonderful horse every week!) and maybe even some pictures and video from him on the horse, Thanksgiving, Christmas, the school fashion show and more. :) Blessings, dear friends and family. We love you and thank God for your support!

1 comment:

Susan diaz desantis said...

Hi ill prayer for you all.God is good. Hugs and kisses.