Well my long day has turned into a long evening sitting at the computer researching all the new terms thrown at us throughout the day. I should get to bed, but I wanted to give everyone an update on Zane. He was hooked up to the EEG around 1pm and immediately had a grand mal seizure. I guess he was hoping that by giving them what they wanted right away he could get disconnected right away but they still want him recorded overnight. He took a 2 hour nap and had another grand mal seizure shortly after waking up. That was around 3:30 this afternoon and he hasn't had any grand mals since then. He has had a few myoclonic seizures throughout the day, as well.
Dr. Crisp is suspecting that Zane has Lennox-Gastaut Syndrome and hopefully this EEG will give him more clarification on that (actually I think it already has). It is a form of epilepsy that includes many types of seizures and can be resistant to medication. Dr. Crisp would like Zane to try a new med called Keppra along with the Zonegran he is already on for about a week. If that doesn't work he believes Zane would be a good candidate for the Ketogenic Diet. This is a very strict diet that is high in fats and low in protein and carbs. He would be hospitalized for 3-5 days while beginning the diet and would continue on it for approx 2 years. If all goes well he will come off the diet and be seizure and medication free. If it doesn't work (which can be determined in 2-3 months on the diet) there are still more options to include Vagus Nerve Stimulation. The doctor suggested we check out the Charlie Foundation for more info on the diet. I found this essay (written by Charlie's father) particularly interesting. I believe it probably rings true for all kinds of medical issues, not just epilepsy.
They gave Zane his first dose of Keppra intravenously so that it will build up in his system faster. They want him there for observation on this new med but the doctor said that if he responds well he hopes to release him tomorrow. I really hope that is the case. Whether he lets on or not, I know being in the hospital is really stressful for Zane, as it is for anyone. I'm probably leaving a few things out, but I'm having difficulty thinking straight. I am off to bed.
4 comments:
I told you tonight on the phone, and I will say it here again....y'all amaze me. This is such a stressful time, and surely all you want is a major freak our session, but you and Abe are strong for your kiddo. And as you told me...you do anything for your kids.
We love you. Your family is strong, resilient, and will come away with knowledge, love, and all that you need to deal with this trial that has been put before you.
And....what helps...Zane is a Super Hero!
Dear Ones,
I'm here. And I thank God for having each one of you in my life. Beth, Abe, Zane, & Brody, you are blessings in my life and enrich it every day. I'm reading everything you are sending,EVERYTHING and so grateful you took time to send it. I'm so proud of each one of you on Team Jacquot There is a lot here to digest as I read. For now, I just want you to know that I'm here with you, and I always will be, and I care so very much. I'll be back to try to reply if I can word it. Until then, know my love surrounds you...Granny
Hi Beth! Keeping you all in our thoughts and prayers.
you know i'm here for you guys if you need ANYTHING. i'll be down there in a heartbeat. i love all of you so much and i'm so sorry you guys are having to go through this. i know it's hard on you and abe as well as zane! i'm proud of how strong you are and hope that one day i'll have kids and will be as great a mom as you are Beth. i love you!!!! please let me know whatever ya'll need.
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