Childhood epileptic encephalopathy (Lennox-Gastaut syndrome [LGS]) is a rare and debilitating form of childhood-onset epilepsy. The syndrome is characterized by frequent seizures and multiple seizure types, a resistance to medications or therapies, regression, and an abnormal EEG with generalized slow spike-and-wave discharges. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.

Tuesday, June 15, 2010

Michael's Progress 6-15-10

Craig here. Susan gave me permission to post to this blog from my own computer so hopefully I will be able to make more frequent entries.

We are now on day 65+ of no seizures. It is so wonderful that we've basically lost track of the days seizure free. I for one though remain cautiously optimistic. Given what we were lead to believe from the original doctors, what Michael is experiencing is miraculous. During this time frame we initially weened him from Clonzapane (which was an addictive anti-seizure medication); then, over about 5 weeks, weened him down to 1/2 the Banzel he was originally taking (another anti-seizure med) . Last week (per doctor's instructions) we stopped one of the anti-virus medications. Other than 1.5 pills of Banzel/day (vs. 3) and one anti-virus med (vs. 2) Michael is not taking any other prescription meds (other than supplements, B-12 and vitamins). I still give him a B-12/B-6 shot every morning and he takes it with NO fuss. He sometimes laughs when I stick him like "it that all you got". I realize he should mad as hell about getting shots every morning in the booty but I can tell you his attitude, for whatever reason, makes my job much easier. He also has ALWAYS taking his meds like a champ and for that we are very grateful. So in summary, no seizure and taking very little medications. Michael is rockin'!

It is weird, it is though he never had seizures and it is like that entire chapter never happened. I hope that book, chapter, whatever, stays closed forever. Wondering what Michael's and our lives would be like today and maybe forever if we had not met Dr. Stewart and his crew a mere 9 months ago. These thoughts makes me almost cry. We are so blessed and Michael, in light of what he has and is going through, is also very blessed. I cannot tell you how many folks tell me they are still praying for Michael. Keep 'em coming!

Michael makes cognitive improvements everyday. Though hard to tell and he does ebb and flow, overall he is certainly improving. He does things he never could before, plays with certain toys appropriately (or at all) that he glossed over before, interacts with his brothers (and they in turn interact with him...very cool to watch). Matthew should be careful though as he has a tendency to play rough with Michael and at 42 lbs, Michael is catching up fast and I am afraid that before too long he will be able to whip Matthew (or at least push him around) . I keep warning Matthew but he does not listen. He may learn the hard way sooner than later.

As a result of Michael's progress, we've gone from watching him 90% of the time to watching him maybe 50-60% of the time. Boy what a difference this makes. He was constantly on the go, climbing on the counters, sitting in the sink turning on the water (drenching himself in the process), hanging from the stair banister, turning on the water in the tub then leaving, pulling stuff off shelves and furniture, etc. This was constant. If he was not sleeping or in his high chair secure, he was on the move and needed adult supervision. He has not climbed on the counters in weeks (YEAH!). He still is on the move but more calmly, more purposefully and without so much collateral damage. We just need to make sure he is in the house or the backyard and we are good! While his cognition is getting better, he stills does not talk or listen or understand about leaving the house, the street is a dangerous place, drinking the neighbor's water fountain water is disgusting and he still has little fear so we are still vigilant.

Michael's focus, awareness, listening and eye contact improves everyday. He is such a happy little boy. He has a great laugh that went MIA while he was having seizures. It is SOOO nice to hear him laugh. He as the best belly laugh. You can now tickle him and he will laugh (I just to tickle him and got nothing (very depressing)). He also sometimes laughs when I sing to him. I know I stink as a singer but to hear him laugh it is worth my embarrassment to sing to him.

Please know he still has a long way to go but he is headed in the right direction. While is not yet talking and I cannot tell if he understand much yet, I keep waiting for him to say "Dad, I'm hungry, I want some pizza" or something. In addition to some of the examples above, he is now opening doors he could never figure out how to open. We had installed a keyed lock on our pantry but he now knows that he can turn the key and then use his other hand to open the door. This is all great (though we had to hide the pretzels (one of his favorites)). He goes into the backyard about 50 times a day and enjoys being outside and playing. He still keeps to himself most of the time but has routine and things he enjoys out there like climbing up the slide and sliding down, flipping over our hammock and picking up sticks and touching them to the ground. To us he is just being a boy in the backyard and it is great. He and I spent some time the other day sitting in the grass and pushing the ball back and forth. It was awesome and he was having fun and seemed to understand what we were doing.

All of Michael's progress has made everyone's lives much easier. Looking back we were on constant alert and that heightened sense of protection and caring and related stress was probably harder on us all than we knew at the time. I guess you just prepare yourself for the long haul and deal with it as it comes but looking back, it sucked and was tiring and stressful (especially for least I could go to work, she was always at work and on call for Michael 24X7). Today is still tough but to a much lesser degree. I think Susan would certainly second this. We've been able to come up for air and I know Michael has to be relived too. I wonder what he thinks about?

Before the seizures stopped we rarely went out to eat as a family, we took the other boys out of extracurricular activities (no basketball, baseball or soccer) we were just solely focused on Michael and getting him any assistance and help we could find. Everything else which was "extra" was put on the back burner. I hope that John and Matthew did not realize they were getting slighted (they certainly never said anything. It just was and we all rolled with it. Susan and I made efforts to spend time with John and Matthew together and individually as much as possible. Movies, bike rides, working the cows or riding horses, swimming or running to the store just to name a few. They also got really good quality time with their Grandma and their Nana and each got a few special trips to New Mexico or the ranches. It all works itself out I guess. God must have a plan!

Until next time, thanks for reading this far down and thank you for caring about Michael.

1 comment:

Melanie Raine said...

Wow! What fantastic progress!!! I will keep those prayers coming for sure. Your doctor really does sound like an angel right here on earth. You guys take care:)