What we know for now

Lucas, as always, was a super champ for the EEG last week. He, thankfully, fell asleep soon after the tech began placing the leads on his head (a process which he does not enjoy). We kept the activities pretty minimum, no real therapy stuff, due to having a "ponytail" of wires coming off of his head connecting to a receiver in a little "back pack" that wasn't long enough for him to stand without me picking it up. That was then connected to another wire that lead to the wall. We had one more wire that we had to keep close that was the button I had to push any time he had a seizure. It was easy to get tangled and complicated to move much, so we didn't. :)

Thankfully, they were able to gather a lot of information and we now have a new diagnosis (Dx): Lennox-Gastaut Syndrome. Basically, this has to do with his age and the type of seizures (sz) he has. They said that his sz are "tonic", meaning they involve an increase in the muscle tone. They said that though his sz look the same way suggesting (outwardly) the possibility that they are located in a single location in the brain, they are, in fact, diffuse, involving the entire brain. They said that there is actually always some level of sz-like activity in the brain, even between sz. (I did not get a lot of clarity on this, but hope to when we follow up with Dr. Burris next Thursday.)

Typically, I was told in the hospital, Lennox-Gastaut is treated with drugs that have more severe side effects, liver and bone marrow damaging side effects. Last month, however, a new drug hit the US market called Banzel. It has very mild (known) side effects including dizziness and fatigue, the same kind of side effects the other meds he's tried have. Being that this is a brand-spanking-new drug, it is not easy to get. We had to go to a special pharmacy about a half hour away to get it, but it finally came in today so we will start him on it tonight. They said that we should see results pretty quickly and we are hopeful that they will be excellent. :)

If you decided to read up on Lennox-Gsataut, then you may have read that it is uncommon for children to grow out of sz disorders all together, though they do "grow out of" Lennox-Gastaut. Typically, sz change and new Dx are made. This, of course, is not news that we prefer, but our faith remains in God Most High and we know that He has Lucas' best interest in mind, always. One tiny example is that if we had scheduled the EEG just 2-3 weeks earlier (as I was anxious to do and rather frustrated in waiting), we would have only had more harsh drugs as our options. As it worked out, though, we now have a much preferred option. A nice reminder of how God is always in control even when we try to take that control from Him. :)

We had the wonderful gift of watching Lucas begin his adventures in walking that raised our spirits immeasurably high. We hope that the video does the same for you. (I also apologize for the sometimes annoying pitch my voice takes as I squealed with excitement.) Her also are some pictures for your viewing pleasure.

January/February 2009

Thanks for your love and prayers. We are certain they make things far better. :)