December 16, 2009

And much hair pulling ensues...

If I could sum today up in one word, it would be "Arghhh!"

First off, I apologize for not putting up a Bertrand video yet this week; it'll have to be tomorrow. I took video tonight, but since I waited until too late to take it, Bertrand is just falling asleep in the video. Don't get me wrong, he is adorable, but it doesn't really showcase any of the progress he has made on the diet... Unless falling asleep sitting up can be considered progress. :-P

That is not what has me pulling my hair out though. Bertrand has been sleeping a LOT on the ketogenic diet. He slept a lot before the diet, but he is breaking new records while on it. Almost 20 hours one day! But most days he sleeps closer to 18 hours, which is still a LOT for his age. This is very concerning to me as well as his Keto Team. There could be several causes.
  • Hormone or glucose levels
  • Sleep apnea (because of Bertrand's adorable chunk)
  • Sleep seizures
  • Healing
  • Toxicity
Bertrand's fasting lab results from this morning all came back normal, which is good and rules that out as the cause for the sleepiness. However, what now has me frustrated is, that instead of saying, "Hey, let's keep moving forward with the one treatment which has helped him the most" his keto team is saying, "Hold up. He needs a sleep study which will take two months to get, so until then no more fine-tuning the diet, and we're not going to check his med levels at all, but if anything we'll increase them." ARGHH!

I've been really trying to be more patient and work with our Utah team instead of around them, but everything I heard today makes me want to run to Johns Hopkins! At least Bertrand's neurologist gave us the option of staying the current course without upping his medicine yet.

At least five other keto parents and one adult on the diet have indicated that YES keppra can be a cause of sleepiness and toxicity when on the diet, as it was in their cases. Wouldn't it be easier to test that now, by reducing it 50ml than waiting two months for a sleep study and EEG (because we have to be seen in sleep clinic first before they will schedule a study)? If that doesn't work, we could then try moving the dosage up. Or at the very least, if his labs are fine, why should this prevent us from moving forward with tweaking the diet and increasing at least his dinner to a 3.5:1 ratio? Something is being lost in translation or this is just CYA on our keto team's part.

*Sigh.*

To be honest, I was sick for three weeks and have been exhausted for the past week and a half. I can't even imagine what it would be like to be Bertrand: sick for two years?! Following that logic, it is not too far fetched that Bertrand could be catching up on all the sleep and healing that missed out on for a very long time. I hope it is just that. And, I hope that by the time his sleep study rolls around, he won't need one anymore. :)

2 comments :

  1. How you keep all this on track in the first place is amazing! Just remember our mantra -- we know our kids best, and we will kick whoever's butt to get them to listen to us. If you feel strongly about it, get him tested now. Is it just a blood test?

    {{hugs}}

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