We saw Dr. Crisp yesterday. We had a lengthy (better part of an hour) discussion with him so we walked away with lots of information (thank goodness for the voice recorder). In a nutshell we are continuing with Keppra but at an increased dosage, discontinuing the Chlorazapate (which was only a temporary med), continuing with the Zonegran and adding vitamin B6 to hopefully help with Zane's irritability. We will do this for approximately 2 weeks unless we determine before then that it's really not helping and we need to move ahead with the diet. Next Tuesday Zane will have some lab work done at their Killeen location and it will take another week to get those results back. Amy, the nutritionist, is out this week because her daughter is having her tonsils out, so we don't have any appointment set up with her yet. The doctor speculated that if we go ahead with the diet we are looking at starting it the week of the 20th or the 27th. We also left his office yesterday with a phone number for the parents of another little boy that was in similar shoes as Zane a couple years ago and had great success with the diet. His parents are willing to talk to us about it. I called last night but didn't get an answer. We also took some time looking into books on Amazon that might prove to be valuable resources when it comes time to start the diet. In fact, I am about to order one as soon as I get done here. It can't get her fast enough in my opinion. I am so ready to learn I can't stand it. If we had a better library system here in Killeen I would try looking there but I don't expect they have anything useful for us. I'm still sleeping with Zane and he had another seizure yesterday morning around 5:20am. He had a seizure this morning after waking up but it was hard for us to determine what it was. It was either a more intense and longer myoclonic or a really minor and brief grand mal. It only lasted like 5 seconds. He had some other myoclonic episodes within the half hour following it. He is carrying on like normal now though. As we review our recorded conversations with Dr. Crisp in the near future I will share more info with you guys. Right now it is all just swimming around in my head and I really need to hear it again to be able to repeat much of it.
Home Sweet Home! by The Pioneer Woman
6 years ago
2 comments:
Beth, GOOD FOR YOU!! About the digital voice recorder!! You got on top of it now with a record of what the doctor is saying. These days, any patient HAS to be involved in the cure as much as the doctor is and Zane is too little to know. So you and Abe need to be into it . ANY patient needs an advocate in this day and time!! Meaning every patient needs to be informed themselves about their problem. Doctors don't intend to do that...but they say too much, too fast and without the recorder it just becomes a big whirl in your mind. It sounds as if Zane's seizures are either less often or less severe. I hope I am right. I cling to your blog reports and keep praying and keep on loving you every one. God bless. Love Granny
The voice recorder was definitely a great idea! I agree with Granny, you have to be your own advocate for health care today...and to do that you need knowledge. I hope the UPS man delivers your books extra fast!
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