Re: We're Back in Bi-Carb Hell/

[Guest guest]

Can you try her giving her the last meal just before she goes to bed

, and see if the timing of the seizures changes? Or checking her

glucose shortly before the first ones would usually start?

If her ketones are going too high at night (are they thoough?) because

she is short of cals, then this would make her more acidotic, so it could

affect her bicarb? Mebbe?

What has happened weight/height wise recently?

----- Original Message -----

> They're coming between 9 and 9:30pm, always about 20-30 minutes after

she

> falls asleep. That's also about 3 hours after her last meal, so who

> knows if that means anything. Her activity level has increased so

> much, so I wonder if she needs a calorie increase??? Could that also

> affect bicarbs? Ugh. This is so far over my head....

[Guest guest]

Dear

Before my daughter got on the diet, I spoke with a woman whose son successfully

used the diet and has been seizure free off the diet for over five years.

Anyway, to make a long story short, during the first year he continued to

seizure, though not frequently. Finally they enlisted the help of a dietitian a

a different hospital to help. Lo and behold, the " free " jello they gave him as

a treat frequently was not free at all. It had to be calculated in. When they

stopped using it as a " free " food, the seizures stopped completely.

My daughter's plan does not have it as a free food. Please see if this might be

Langan's problem. It sure was for the child I mentioned!!!

Blessings....... (mum to dear )

langansmom wrote:

,

We just tried that with the meal, although it was an accident b/c

she decided to take a late nap and woke up at 8pm!!! The meal was a

battle- as they all are again.

I was going to check her glucose last night at 9:15 and her seizure

beat me to it. Now that I fed her so late, I don't know that it'll

be accurate, so I may wait until tomorrow night for that.

I checked her BHB and her glucose before her 3rd meal today- BHB

read 6 and glucose at 77, 4 hours after her last meal. I expected

one to be high and one to be low but was surprised that they were

both in the high range. What could that mean?

Weight is slowly inching up- .2 pounds in the last 2 weeks- she is

at 23.2 pounds now. I need to pull out the height chart and see

where she is on it (we're packing to move next week and it is

SOMEWHERE in this mess of a house....). I do think she is growing

taller, though, just from sight.

We started sugar free jello as a " free food " 30 days ago, to try to

get the fluids up. I read in Dr. Freeman's book that you have to

calculate it in, so now I am wondering if that has anything to do

with it???? If Langan's attitude toward meals is the key, then I

would say her bicarbs hit a low on Saturday night, as that is when

she first stopped being interested in meals again. Can the

increased seizure activity cause lower bicarbs?? The chicken or the

egg....

Thanks for everything!

> Can you try her giving her the last meal just before she goes to

bed

> , and see if the timing of the seizures changes? Or checking

her

> glucose shortly before the first ones would usually start?

> If her ketones are going too high at night (are they thoough?)

because

> she is short of cals, then this would make her more acidotic, so

it could

> affect her bicarb? Mebbe?

> What has happened weight/height wise recently?

>

>

>

> ----- Original Message -----

> From: " langansmom " <tuckerwing@m...>

>

> > They're coming between 9 and 9:30pm, always about 20-30

minutes after

> she

> > falls asleep. That's also about 3 hours after her last meal,

so who

> > knows if that means anything. Her activity level has

increased so

> > much, so I wonder if she needs a calorie increase??? Could

that also

> > affect bicarbs? Ugh. This is so far over my head....

" 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!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

,

Thank you so much! I am waiting for the dietician to call and will

certainly bring it up with her. It's the only thing we have changed

so I am hoping this is the answer! We'll keep you posted!

Thanks again!

> > Can you try her giving her the last meal just before she goes

to

> bed

> > , and see if the timing of the seizures changes? Or checking

> her

> > glucose shortly before the first ones would usually start?

> > If her ketones are going too high at night (are they thoough?)

> because

> > she is short of cals, then this would make her more acidotic, so

> it could

> > affect her bicarb? Mebbe?

> > What has happened weight/height wise recently?

> >

> >

> >

> > ----- Original Message -----

> > From: " langansmom " <tuckerwing@m...>

> >

> > > They're coming between 9 and 9:30pm, always about 20-30

> minutes after

> > she

> > > falls asleep. That's also about 3 hours after her last meal,

> so who

> > > knows if that means anything. Her activity level has

> increased so

> > > much, so I wonder if she needs a calorie increase??? Could

> that also

> > > affect bicarbs? Ugh. This is so far over my head....

>

>

>

> " 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!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

,

Thank you so much! I am waiting for the dietician to call and will

certainly bring it up with her. It's the only thing we have changed

so I am hoping this is the answer! We'll keep you posted!

Thanks again!

> > Can you try her giving her the last meal just before she goes

to

> bed

> > , and see if the timing of the seizures changes? Or checking

> her

> > glucose shortly before the first ones would usually start?

> > If her ketones are going too high at night (are they thoough?)

> because

> > she is short of cals, then this would make her more acidotic, so

> it could

> > affect her bicarb? Mebbe?

> > What has happened weight/height wise recently?

> >

> >

> >

> > ----- Original Message -----

> > From: " langansmom " <tuckerwing@m...>

> >

> > > They're coming between 9 and 9:30pm, always about 20-30

> minutes after

> > she

> > > falls asleep. That's also about 3 hours after her last meal,

> so who

> > > knows if that means anything. Her activity level has

> increased so

> > > much, so I wonder if she needs a calorie increase??? Could

> that also

> > > affect bicarbs? Ugh. This is so far over my head....

>

>

>

> " 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!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

,

I was just reading this diolog and have a couple ideas to mull

around. My son had the same issue at one point. We started giving

about 100 Kcal snack just before bed and seemed to solve the

problem. Also regarding jello as a free item, we can do it now

occasionally, but in the beginning we couldn't we would use a little

sweetened whipped cream with some crushed macadamia nuts on top and

he loved it. Also I don't know if you use Nutrasweet/Aspartame in

anything else you give her, but this could denote a change, some are

sensative to it and it actually can increase seizures if there is a

sensativity. I hope all goes well with the Dietician.

Tina - Mom to Nicky, Keto mom since 8/2001

> > > Can you try her giving her the last meal just before she goes

> to

> > bed

> > > , and see if the timing of the seizures changes? Or

checking

> > her

> > > glucose shortly before the first ones would usually start?

> > > If her ketones are going too high at night (are they

thoough?)

> > because

> > > she is short of cals, then this would make her more acidotic,

so

> > it could

> > > affect her bicarb? Mebbe?

> > > What has happened weight/height wise recently?

> > >

> > >

> > >

> > > ----- Original Message -----

> > > From: " langansmom " <tuckerwing@m...>

> > >

> > > > They're coming between 9 and 9:30pm, always about 20-30

> > minutes after

> > > she

> > > > falls asleep. That's also about 3 hours after her last

meal,

> > so who

> > > > knows if that means anything. Her activity level has

> > increased so

> > > > much, so I wonder if she needs a calorie increase??? Could

> > that also

> > > > affect bicarbs? Ugh. This is so far over my head....

> >

> >

> >

> > " 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!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe: ketogenic-

unsubscribe

> >

> >

> >

> >

> >