Re: Langan Update- Getting Worried Over Here

[Guest guest]

-

It's just a thought...and probably nothing...but some kids w/underlying

metabolic and/or mitochondrial issues have great trouble with acidosis on the

'regular' ketogenic diet. Maybe a question to Langan's dietician about

switching

to the MCT version (which is calculated really differently from the

long-chain/fat version in that 60% of total daily calories usually comes from

the MCT Oil

<8.3 cals/gm>, 11% are from PRO, 19% CHO, and 11% from long-chain/dietary

fat).

It's still a ketogenic diet for seizure control but rarely has the acidotic

effects.

Tracey

(following your posts and root-ing for an end to all lil Langan's problems!)

[Guest guest]

-

It's just a thought...and probably nothing...but some kids w/underlying

metabolic and/or mitochondrial issues have great trouble with acidosis on the

'regular' ketogenic diet. Maybe a question to Langan's dietician about

switching

to the MCT version (which is calculated really differently from the

long-chain/fat version in that 60% of total daily calories usually comes from

the MCT Oil

<8.3 cals/gm>, 11% are from PRO, 19% CHO, and 11% from long-chain/dietary

fat).

It's still a ketogenic diet for seizure control but rarely has the acidotic

effects.

Tracey

(following your posts and root-ing for an end to all lil Langan's problems!)

[Guest guest]

-

It's just a thought...and probably nothing...but some kids w/underlying

metabolic and/or mitochondrial issues have great trouble with acidosis on the

'regular' ketogenic diet. Maybe a question to Langan's dietician about

switching

to the MCT version (which is calculated really differently from the

long-chain/fat version in that 60% of total daily calories usually comes from

the MCT Oil

<8.3 cals/gm>, 11% are from PRO, 19% CHO, and 11% from long-chain/dietary

fat).

It's still a ketogenic diet for seizure control but rarely has the acidotic

effects.

Tracey

(following your posts and root-ing for an end to all lil Langan's problems!)

[Guest guest]

Has she been tested for metabolic disorders?

Wow, 10 is low....what is the sodium bicarb? Does it have a brand name?

Langan Update- Getting Worried Over Here

Well, we checked Langan's bicarbs yesterday- back down to 10. = (

And that is with her taking 30 cc of sodium bicarb by mouth a day!!

Somehow this has to be a clue to what is going on with her, right?

The neuro is concerned- upped the sodium bicarb to 45 cc a day and

we're changing her ratio to 3.5:1 (from 4:1). They're going to get

bloodwork again tomorrow (to see how the increased supplement does-

I'm sure the change in ratio won't show much by then- it'll just be

one meal).

So the good news- the lower ratio should HOPEFULLY help with the

reflux.

The bad news- she had another seizure today- seems like seizure

control is spinning OUT of control. And right when she seems to

finally be coming out of her medicine haze. She has been so active

and happy. I don't get it. Maybe her increased activity is causing

something??? Who knows. I am terrified that the neuro is near the

point of saying that the diet and Langan don't mix. We have worked

so hard to get here- and it's not like the meds were stopping the

seizures anyway. I just don't want to give up. But at the same

time, if she can't be at a safe bicarb level on the diet then what

choice do we have? We checked her old bloodwork and her bicarbs pre-

keto were normal, so we know the cause. But the tests in January

were when she was on a 3.6, so I am wary about the ratio change

helping.

Can this mean something as far as a dx for her? Seems like we HAVE

TO get something good out of this acidosis mess, right? Any thoughts?

, mom to Langan, 21 months old and keto kid since 11/03; med

free since 4/2/04; having a tough time lately with acidosis. = (

PS I am going to order the yogurt machine and see what we can do with

some good bacteria in her belly. At least that way I'll feel like

I'm doing SOMETHING to help my little sweetie....

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

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