June 11, 2008

Dr.'s appointment...

Kris and I took Gage to the neurologist for a follow up on Monday. It was an alright appointment...definitely not the best we've ever had but by no means the worst.

The basic gist of it is this....

We're going to keep Gage on the ketogenic diet for at least 3 more months in hopes that his body will adjust to it and it will start to have positive affect. As of now it hasn't been working and in fact his seizures have been a bit worse but the Dr. didn't seem overly concerned by it.

We have also put Gage back on melatonin at night to help with sleep. It didn't really work very well before but we're going to humor the Dr. and give it another go...if it doesn't work then we're going to try something else.
According to the last EEG Gage is almost never in a normal sleep pattern...he doesn't enter REM state...he more or less naps. This is caused by his seizures and the lack of sleep is actually causing seizures....it's a vicious cycle.
If neither the melatonin or the sedative have much affect then we're going to eventually back off a bit on the felbatol.
As for now we just wait and see.

The biggest area of concern though was Gage's G-tube site. Dr. Z called G-I down to take a look at it because Kris and I (and her) were concerned about the amount of granulation tissue he had accumulated in such a short time....guess what?? It's not granulation this time...it's a prolapse. I'm currently waiting on a call back from Tara (his nurse case manager) for an appointment with the surgeon.
It's always something for my poor baby.

In other (happier) news...the house is just about done!!!!!
Kris and I can't wait for Gage to see his new room!! I will eventually get pictures of the house up on here for you all to see.
His room is just amazing. It's bright and colorful and just plain awesome.

Well time for me to get the kiddo hooked up for another feed.
Until next time...take care.


Anonymous said...

I'm sorry to hear that Gage is having surgery again. Poor baby! It's so fucking frustrating!

I am excited for you to post pics of the house. I am glad it will be over soon for you. Moving is such a drag! You are almost there girl!


Reagan Leigh said...

I know how you feel about your frustration with the ketogenic diet (and the no sleep). My daughter has been on it for 1+ month and her seizures have also gotten slightly worse!! We just lowered her ratio from 4:1 to 3:1(without any improvement) and now we're going to try adding a nighttime feeding b/c her ketones are the lowest in the morning (and her seizures are the worst). Hang in there! I hope this works for Gage!

Anonymous said...

Hey sis, just checking for an update. xoxo