Re: Kalob-New Keto Kid/a bit better today

[Guest guest]

First I have to say a huge THANK YOU for your responses. Today Kalob

has done a bit better, i'm going with what he's telling me, well as

much as he can w/o words. Kalob is non verbal but his actions while

trying to feed him tell me ALOT.

Yes, we are using the same keto team, not sure it's a team though.

We have the epitoligists and dietician. She is just wonderful with

us, as far as I have seen.

Kalob is on a 4:1 ratio and 1250 calories. He is set up for 3 meals

a day with 1 or 2 snacks, but i've done just ketocal today. He's

taken 2 meals and 1 snack which was split in two because half way

through he just looked nauseated (sp?).

I think part of our problem was we were concentrating on the food

going in but he wasn't getting enough fluid. Can't that cause

ketones to be higher?

I can't adjust his meals on my own, don't know how to. The dietician

makes up all of his meals for me. She says if we want something else

to let her know and she will calculate it. She's a little

controlling but it worked before, hopefully it'll work again.

She called me this am after I left her a message. Turns out she was

off today but called in to check her messages, that sounds good eh?

Yes, i'm babbling again. Do that quite often. I am praying that

Kalob continues to hold down his meals but am still concerned that

he is to ketotic (?). His strips are still dark but not as dark as

yesterday. I will keep monitoring his glucose, it'll be easier now

that I figured out that I was using the toughest setting on the pen

and not the lightest. Poor guy, I feel awful, I was wondering when

he jumped the way he did when being stuck cuz he didn't do that in

the hospital.

Thanks again for the help! I hope to be able to contribute some here

to, but am sure there will be many more questions.. He is still

having some really strong seizures, stronger than before starting

the diet.

I am a little peeved at the docs for changing so much right before

starting but we were left with little choice after him having to be

hospitalized thurs due to what we believe was a new seizure. We have

also discussed whether or not the med changes are affecting things

and maybe he needs a couple days to adjust?

Thank you all, hope to talk again soon...

[Guest guest]

Glad that things are better. Yes, you need to keep the fluids right on

target. Too much or too little can cause big problems. Ratio and

calories may have to be adjusted. Try to keep records of everything.

That will assist you to make the right moves. If you think that he is

too ketotic and you give him a little juice and that makes him feel

better and doesn't make ketones too low or bring on seizures, it may

mean that you can lower the ratio a bit. With the change in meds

combined with the diet, you may have more difficulties, but that's life.

It often takes a few days for things to settle down as he adjusts to all

the big changes.

All the best,

Bill

luvmybrats2 wrote:

> First I have to say a huge THANK YOU for your responses. Today Kalob

> has done a bit better, i'm going with what he's telling me, well as

> much as he can w/o words. Kalob is non verbal but his actions while

> trying to feed him tell me ALOT.

>

> Yes, we are using the same keto team, not sure it's a team though.

> We have the epitoligists and dietician. She is just wonderful with

> us, as far as I have seen.

>

> Kalob is on a 4:1 ratio and 1250 calories. He is set up for 3 meals

> a day with 1 or 2 snacks, but i've done just ketocal today. He's

> taken 2 meals and 1 snack which was split in two because half way

> through he just looked nauseated (sp?).

>

> I think part of our problem was we were concentrating on the food

> going in but he wasn't getting enough fluid. Can't that cause

> ketones to be higher?

>

> I can't adjust his meals on my own, don't know how to. The dietician

> makes up all of his meals for me. She says if we want something else

> to let her know and she will calculate it. She's a little

> controlling but it worked before, hopefully it'll work again.

>

> She called me this am after I left her a message. Turns out she was

> off today but called in to check her messages, that sounds good eh?

>

> Yes, i'm babbling again. Do that quite often. I am praying that

> Kalob continues to hold down his meals but am still concerned that

> he is to ketotic (?). His strips are still dark but not as dark as

> yesterday. I will keep monitoring his glucose, it'll be easier now

> that I figured out that I was using the toughest setting on the pen

> and not the lightest. Poor guy, I feel awful, I was wondering when

> he jumped the way he did when being stuck cuz he didn't do that in

> the hospital.

>

> Thanks again for the help! I hope to be able to contribute some here

> to, but am sure there will be many more questions.. He is still

> having some really strong seizures, stronger than before starting

> the diet.

>

> I am a little peeved at the docs for changing so much right before

> starting but we were left with little choice after him having to be

> hospitalized thurs due to what we believe was a new seizure. We have

> also discussed whether or not the med changes are affecting things

> and maybe he needs a couple days to adjust?

>

> Thank you all, hope to talk again soon...

>

>

>

>