On Monday morning Zane had his first EEG since starting the Ketogenic Diet. It was a four hour test this time that required us to keep him up late the night before and get him up early that morning. He was apprehensive at first but soon came to terms with it. He never fell asleep during the test. He read books with Daddy, played his Leapster and watched TV. Daddy took him to play at McDonald's afterwards to burn up some energy and as a reward.
I was not expecting this EEG to come back normal. I had already come to terms with the fact that there might still be some things going on "behind the scenes" despite the fact that he has been seizure free for two months (as of tomorrow). However, we met with Dr. Crisp today (follow-up appt) and the EEG did come back clean. I was pleasantly surprised.
On the other hand some things were spelled out at the appointment today that were difficult to swallow. Like the fact that the 2 years on the diet will start from November when he became seizure free, not August when he began the diet. And after that 2 year mark we will begin weaning him off the diet which could take up to 6 months to do. So we are looking at May of 2010 before this is all done with. But I guess as long as it is working and we can truly be done with it then, it will be worth it.
We also discussed weaning him off his Keppra. Although I would like to get him off his meds ASAP, the doctor doesn't see any reason to rush it. So Zane will go back to Dr. Crisp on April 8th and as long as things are still going smoothly we will begin weaning at that point. It sounds like it will be a slow process but the doctor thinks Zane will respond well to it. We aren't really seeing any side effects from this med, so I guess there really is no reason to rush into it. It's just a nuisance more than anything and I'm sure the crushed up pills mixed in water have to taste really nasty to Zane. But he continues to drink it down without any fuss, so we are very lucky.
I'm not sure that I've kept a good record of Zane's growth since starting the diet. So I want to start now. And I may even get his older stats from the doctor or his dietitian. Today he weighed 39.2 pounds and his height is 40 inches. I know those numbers are higher than when he began the diet which is comforting as one of our concerns about the diet was that he might not grow because of the restricted calories.
So all in all Zane is doing super! We are still so very thankful that we have a doctor that is so open-minded to the ketogenic diet (many aren't). Without it, who knows where we would be today.
7 comments:
Sounds like an awesome visit to the DR!! I'm so happy for Mr. Zane! I am not sure how tall Payton is but Zane weighs about the same as Payton, seeing as she is a girl and not too much older than him it sounds to me that he is right on the money! YAY ZANE!
2 years is nothing for a lifetime, fingers crossed, of no seizures! Yeah 2010!
Give the little guy a hug from us.
I am so happy that the test came back clean and that he is responding so well to the diet. I know it is hard on all of you. Zane is such a little trooper despite all he's had to go through! You must be so proud mama! 2010 will be here before you know it. :)
Yes, before you know it 2010 will be here. Now I know there is a lot of preparation on your part getting the diet in order for him, but this is certainly very good news. Keep plugging along and know it will certainly be a huge celebration when the time has passed. mb from tc
It's great that he's doing so well. I agree with everyone else, I'd take two more years over a lifetime of trouble. All that hard work is paying off. Congratulations, Mr. Zane! J~
That is great news for Zane! Good work mom and dad, too! JR
See, you guys are doing a great job. And Zane too! I definitely think you should document so that when he is 18 and running off with girls you can remind him of all the pain and suffering...hahaha.
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