May 8, 2008

Ketogenic update

We're back!!
Gage did fabulous in the hospital. He was such a trooper...even with the finger sticks every 4 hours to check his blood sugar and with the repeated (unsuccessful) tries to get an I.V. started.
It never fails to amaze me just how good natured he is.


Anyhow...we are officially on the Ketogenic Diet and as of last night he was beginning to show signs of being in Ketosis (I have to check his pee twice a day). He is tolerating the new formula VERY well. He is also doing well on his new and VERY strict feeding schedule.
It's kind of a pain just how strict it is. There's precise times for the feeds and for water. I think we'll get used to it but I need to figure out how to get an I.V. pole for his wheelchair so we can still have him out and about and do his feedings.
The mixing of the new formula is a bit of a pain as it has to be exact down to the gram. For example when adding his food it has to be 122 grams....not 122.1....122. It's a bit trickier than you'd think as you're literally pulling out flakes to make it exact.
We also need to change some products we use on Gage...no more fun tasting kid toothpaste for him...he needs to have the regular adult kind but only certain ones. Shampoos, conditioners, lotions, sunscreens, baby wipes, soap (etc.) all contain some carbs. and it's not known just how much leeches into the skin so it's recommended that we switch to ones that contain little to no carbs.
I wonder is all the atkins crazed people from a couple years back knew this. HAHA
If it works though then all this craziness is MORE than worth it.

While we were there they also did a Long Term EEG on him and it showed that his seizure pattern has changed from Myoclonic Seizures to Tonic Seizures.
I kind of always knew it would happen as Tonic Seizures are very common with LGS but there was obviously a bit of hope that the Dr.'s were mistaken and that he doesn't have LGS but it seems that he does so now we just fully accept it and do what we can to treat it.

Otherwise things are pretty much status quo with the Gagester. He really does amaze me with how well he tolerates all the poking and prodding. I'm not sure I could handle a fraction of what he does.

Please keep him in your thoughts that the new diet works at treating his seizures. We probably won't fully know the results for a couple of months.

Until next time :)
XOXO

3 comments:

Anonymous said...

Wow you have had sooo... much going on! I'm amazed at how well YOU handle all of this, you truly are an inspiration. I hope and pray that this diet will make all the difference for Gage!! Thanks for taking time out of your busy day to keep all of us updated!! Love Ya Girl! ~ Makara

Tracy said...

I think i saw a show on that... If it is the same diet, the little girl did a 180 turn around...Best of luck with the diet it may be the answer!

Nicole said...

Hi Shannon,
It is nice to "meet' you. :) Thanks for introducing yourself. I'm glad my 4 silly girls provided some entertainment for you while you were in the hospital. :)

Your Gage is a cutie! Very interesting stuff w/the new diet and potential diagnosis. I hope I have the time to learn and keep up with your journey.

Many hugs and prayers from Kentucky, Nicole