Re: Metabolic Experts??? What on earth is going on here???/

September 2, 2004

,

Her latest bicarb level (Friday) was 16, while on the 2:1 but before

we started the further wean. It was the " straw that broke the

camel's back " for the neuro to speed up the wean. She said there was

no way Langan should have that low of a bicarb on 2:1, especially

since she is drinking a large amount of fluids these days.

I guess I'm hoping it is her body hanging onto ketosis, except for

that pre-diet urine test and for the fact that ketones are going UP

instead of staying the same or decreasing. I probably need to just

stay off the internet and let the doctors do the digging- there are

lots of nasty disorders out there.... Most don't fit Langan's

development- slow but going forward instead of regression, but it is

still scary to see some of them!

Thanks! I hope all is well with !

>

> > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

from

> > keto and all is, knock on wood, going well. She had one seizure

> > Tuesday night, the night of her first diet change, but nothing

since

> > then. Now for the weirdness....

> >

> > I checked her waking blood ketones (bhb) Tuesday morning before we

> > started the wean. Remember, she was then on a 2:1 ratio with

> > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

her

> > normal waking ketones on 4:1. What on earth???

> >

> > It gets better. I talked to our dietician and we decided to get a

> > bedtime BHB also, to just see if maybe the extra food during the

day

> > and then no food overnight was doing something. I checked her 2

1/2

> > hours after her last meal last night, also after a day of

unlimited

> > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

ketones

> > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

4:1

> > ratio.

> >

> > What on earth is going on? I think I posted a while back that the

> > weekend before we initiated the diet I did a " trial run " with the

> > urine ketosrix and Langan registered large ketones. I was

confused

> > about that but her dietician at the time said it was b/c of the

> > sniffles she had and that it was a good sign that she would go

into

> > ketosis easily. Our current dietician says no way, and from what

I

> > have learned over these past 9 months I have to agree with her.

So

> > what is up with this? Is there some condition that could cause

> > Langan to be in ketosis naturally? Could this be a clue to her

> > seizures? I am so confused!!

> >

> > Thanks!

> >

> > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > ratio but undertaking rapid keto wean due to severe persistent

> > metabolic acidosis, but the ketones keep coming!

> >

> > " 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

> >

September 2, 2004

,

Her latest bicarb level (Friday) was 16, while on the 2:1 but before

we started the further wean. It was the " straw that broke the

camel's back " for the neuro to speed up the wean. She said there was

no way Langan should have that low of a bicarb on 2:1, especially

since she is drinking a large amount of fluids these days.

I guess I'm hoping it is her body hanging onto ketosis, except for

that pre-diet urine test and for the fact that ketones are going UP

instead of staying the same or decreasing. I probably need to just

stay off the internet and let the doctors do the digging- there are

lots of nasty disorders out there.... Most don't fit Langan's

development- slow but going forward instead of regression, but it is

still scary to see some of them!

Thanks! I hope all is well with !

>

> > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

from

> > keto and all is, knock on wood, going well. She had one seizure

> > Tuesday night, the night of her first diet change, but nothing

since

> > then. Now for the weirdness....

> >

> > I checked her waking blood ketones (bhb) Tuesday morning before we

> > started the wean. Remember, she was then on a 2:1 ratio with

> > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

her

> > normal waking ketones on 4:1. What on earth???

> >

> > It gets better. I talked to our dietician and we decided to get a

> > bedtime BHB also, to just see if maybe the extra food during the

day

> > and then no food overnight was doing something. I checked her 2

1/2

> > hours after her last meal last night, also after a day of

unlimited

> > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

ketones

> > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

4:1

> > ratio.

> >

> > What on earth is going on? I think I posted a while back that the

> > weekend before we initiated the diet I did a " trial run " with the

> > urine ketosrix and Langan registered large ketones. I was

confused

> > about that but her dietician at the time said it was b/c of the

> > sniffles she had and that it was a good sign that she would go

into

> > ketosis easily. Our current dietician says no way, and from what

I

> > have learned over these past 9 months I have to agree with her.

So

> > what is up with this? Is there some condition that could cause

> > Langan to be in ketosis naturally? Could this be a clue to her

> > seizures? I am so confused!!

> >

> > Thanks!

> >

> > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > ratio but undertaking rapid keto wean due to severe persistent

> > metabolic acidosis, but the ketones keep coming!

> >

> > " 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

> >

September 2, 2004

,

Her latest bicarb level (Friday) was 16, while on the 2:1 but before

we started the further wean. It was the " straw that broke the

camel's back " for the neuro to speed up the wean. She said there was

no way Langan should have that low of a bicarb on 2:1, especially

since she is drinking a large amount of fluids these days.

I guess I'm hoping it is her body hanging onto ketosis, except for

that pre-diet urine test and for the fact that ketones are going UP

instead of staying the same or decreasing. I probably need to just

stay off the internet and let the doctors do the digging- there are

lots of nasty disorders out there.... Most don't fit Langan's

development- slow but going forward instead of regression, but it is

still scary to see some of them!

Thanks! I hope all is well with !

>

> > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

from

> > keto and all is, knock on wood, going well. She had one seizure

> > Tuesday night, the night of her first diet change, but nothing

since

> > then. Now for the weirdness....

> >

> > I checked her waking blood ketones (bhb) Tuesday morning before we

> > started the wean. Remember, she was then on a 2:1 ratio with

> > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

her

> > normal waking ketones on 4:1. What on earth???

> >

> > It gets better. I talked to our dietician and we decided to get a

> > bedtime BHB also, to just see if maybe the extra food during the

day

> > and then no food overnight was doing something. I checked her 2

1/2

> > hours after her last meal last night, also after a day of

unlimited

> > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

ketones

> > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

4:1

> > ratio.

> >

> > What on earth is going on? I think I posted a while back that the

> > weekend before we initiated the diet I did a " trial run " with the

> > urine ketosrix and Langan registered large ketones. I was

confused

> > about that but her dietician at the time said it was b/c of the

> > sniffles she had and that it was a good sign that she would go

into

> > ketosis easily. Our current dietician says no way, and from what

I

> > have learned over these past 9 months I have to agree with her.

So

> > what is up with this? Is there some condition that could cause

> > Langan to be in ketosis naturally? Could this be a clue to her

> > seizures? I am so confused!!

> >

> > Thanks!

> >

> > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > ratio but undertaking rapid keto wean due to severe persistent

> > metabolic acidosis, but the ketones keep coming!

> >

> > " 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

> >

September 2, 2004

,

Forgot to add that her other bloodwork was normal (anion gap, etc).

> >

> > > Hello all. Well, we are in day #3 of Langan's 8 day rapid

wean

> from

> > > keto and all is, knock on wood, going well. She had one seizure

> > > Tuesday night, the night of her first diet change, but nothing

> since

> > > then. Now for the weirdness....

> > >

> > > I checked her waking blood ketones (bhb) Tuesday morning before

we

> > > started the wean. Remember, she was then on a 2:1 ratio with

> > > unlimited fluids for over 2 weeks. 3.8!!! That was higher

than

> her

> > > normal waking ketones on 4:1. What on earth???

> > >

> > > It gets better. I talked to our dietician and we decided to

get a

> > > bedtime BHB also, to just see if maybe the extra food during

the

> day

> > > and then no food overnight was doing something. I checked her

2

> 1/2

> > > hours after her last meal last night, also after a day of

> unlimited

> > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> ketones

> > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> 4:1

> > > ratio.

> > >

> > > What on earth is going on? I think I posted a while back that

the

> > > weekend before we initiated the diet I did a " trial run " with

the

> > > urine ketosrix and Langan registered large ketones. I was

> confused

> > > about that but her dietician at the time said it was b/c of the

> > > sniffles she had and that it was a good sign that she would go

> into

> > > ketosis easily. Our current dietician says no way, and from

what

> I

> > > have learned over these past 9 months I have to agree with

her.

> So

> > > what is up with this? Is there some condition that could cause

> > > Langan to be in ketosis naturally? Could this be a clue to her

> > > seizures? I am so confused!!

> > >

> > > Thanks!

> > >

> > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > > ratio but undertaking rapid keto wean due to severe persistent

> > > metabolic acidosis, but the ketones keep coming!

> > >

> > > " 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

> > >

September 2, 2004

,

Forgot to add that her other bloodwork was normal (anion gap, etc).

> >

> > > Hello all. Well, we are in day #3 of Langan's 8 day rapid

wean

> from

> > > keto and all is, knock on wood, going well. She had one seizure

> > > Tuesday night, the night of her first diet change, but nothing

> since

> > > then. Now for the weirdness....

> > >

> > > I checked her waking blood ketones (bhb) Tuesday morning before

we

> > > started the wean. Remember, she was then on a 2:1 ratio with

> > > unlimited fluids for over 2 weeks. 3.8!!! That was higher

than

> her

> > > normal waking ketones on 4:1. What on earth???

> > >

> > > It gets better. I talked to our dietician and we decided to

get a

> > > bedtime BHB also, to just see if maybe the extra food during

the

> day

> > > and then no food overnight was doing something. I checked her

2

> 1/2

> > > hours after her last meal last night, also after a day of

> unlimited

> > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> ketones

> > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> 4:1

> > > ratio.

> > >

> > > What on earth is going on? I think I posted a while back that

the

> > > weekend before we initiated the diet I did a " trial run " with

the

> > > urine ketosrix and Langan registered large ketones. I was

> confused

> > > about that but her dietician at the time said it was b/c of the

> > > sniffles she had and that it was a good sign that she would go

> into

> > > ketosis easily. Our current dietician says no way, and from

what

> I

> > > have learned over these past 9 months I have to agree with

her.

> So

> > > what is up with this? Is there some condition that could cause

> > > Langan to be in ketosis naturally? Could this be a clue to her

> > > seizures? I am so confused!!

> > >

> > > Thanks!

> > >

> > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > > ratio but undertaking rapid keto wean due to severe persistent

> > > metabolic acidosis, but the ketones keep coming!

> > >

> > > " 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

> > >

September 2, 2004

,

Forgot to add that her other bloodwork was normal (anion gap, etc).

> >

> > > Hello all. Well, we are in day #3 of Langan's 8 day rapid

wean

> from

> > > keto and all is, knock on wood, going well. She had one seizure

> > > Tuesday night, the night of her first diet change, but nothing

> since

> > > then. Now for the weirdness....

> > >

> > > I checked her waking blood ketones (bhb) Tuesday morning before

we

> > > started the wean. Remember, she was then on a 2:1 ratio with

> > > unlimited fluids for over 2 weeks. 3.8!!! That was higher

than

> her

> > > normal waking ketones on 4:1. What on earth???

> > >

> > > It gets better. I talked to our dietician and we decided to

get a

> > > bedtime BHB also, to just see if maybe the extra food during

the

> day

> > > and then no food overnight was doing something. I checked her

2

> 1/2

> > > hours after her last meal last night, also after a day of

> unlimited

> > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> ketones

> > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> 4:1

> > > ratio.

> > >

> > > What on earth is going on? I think I posted a while back that

the

> > > weekend before we initiated the diet I did a " trial run " with

the

> > > urine ketosrix and Langan registered large ketones. I was

> confused

> > > about that but her dietician at the time said it was b/c of the

> > > sniffles she had and that it was a good sign that she would go

> into

> > > ketosis easily. Our current dietician says no way, and from

what

> I

> > > have learned over these past 9 months I have to agree with

her.

> So

> > > what is up with this? Is there some condition that could cause

> > > Langan to be in ketosis naturally? Could this be a clue to her

> > > seizures? I am so confused!!

> > >

> > > Thanks!

> > >

> > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > > ratio but undertaking rapid keto wean due to severe persistent

> > > metabolic acidosis, but the ketones keep coming!

> > >

> > > " 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

> > >

September 2, 2004

,

It must be either drugs doing something bad to her organs or, as you

say, an underlying problem with metabolism; inability to process

carbohydrates, etc.

It is good that the keto diet, while not working well to control

seizures, may have directed you to a metabolic problem early on.

That pre-diet high ketone test was probably correct after all.

Bill

langansmom wrote:

> ,

>

> Her latest bicarb level (Friday) was 16, while on the 2:1 but before

> we started the further wean. It was the " straw that broke the

> camel's back " for the neuro to speed up the wean. She said there was

> no way Langan should have that low of a bicarb on 2:1, especially

> since she is drinking a large amount of fluids these days.

>

> I guess I'm hoping it is her body hanging onto ketosis, except for

> that pre-diet urine test and for the fact that ketones are going UP

> instead of staying the same or decreasing. I probably need to just

> stay off the internet and let the doctors do the digging- there are

> lots of nasty disorders out there.... Most don't fit Langan's

> development- slow but going forward instead of regression, but it is

> still scary to see some of them!

September 2, 2004

,

It must be either drugs doing something bad to her organs or, as you

say, an underlying problem with metabolism; inability to process

carbohydrates, etc.

It is good that the keto diet, while not working well to control

seizures, may have directed you to a metabolic problem early on.

That pre-diet high ketone test was probably correct after all.

Bill

langansmom wrote:

> ,

>

> Her latest bicarb level (Friday) was 16, while on the 2:1 but before

> we started the further wean. It was the " straw that broke the

> camel's back " for the neuro to speed up the wean. She said there was

> no way Langan should have that low of a bicarb on 2:1, especially

> since she is drinking a large amount of fluids these days.

>

> I guess I'm hoping it is her body hanging onto ketosis, except for

> that pre-diet urine test and for the fact that ketones are going UP

> instead of staying the same or decreasing. I probably need to just

> stay off the internet and let the doctors do the digging- there are

> lots of nasty disorders out there.... Most don't fit Langan's

> development- slow but going forward instead of regression, but it is

> still scary to see some of them!

September 2, 2004

langansmom wrote:

> I guess I'm hoping it is her body hanging onto ketosis, except for

> that pre-diet urine test and for the fact that ketones are going UP

> instead of staying the same or decreasing. I probably need to just

> stay off the internet and let the doctors do the digging- there are

> lots of nasty disorders out there.... Most don't fit Langan's

> development- slow but going forward instead of regression, but it is

> still scary to see some of them!

(((((())))))

Hang in there and just so you know, my view of the world, the more clues

are kiddos give us, the better! We have a PILE of clues from Jess,

problem is have not yet found the person who can put them all together

)

But yes I would agree, stop searching for the worst, never an optimist

or a pessimist, I say, just a realist. You don't have enough info yet

so you are just speculating, which can be dangerous for the mental

health. You need some time at the lower ratio.

So are you completely off the diet now?? If so, I would test urine and

bhb once a week and go for at least 3 weeks before you think you " know "

anything.

Jess is good, thanks for asking. Have been asking myself how long I

would stay on keto board But old habits die hard, took me a week to

put scale away after stopped weighing, another week to take mixer off

the counter where it had sat for 6+ years.........LOL

Anyway now I will have to stick around for Langan......and

......need to make sure stays okay..........LOLOL

You get it, I know

>

> Thanks! I hope all is well with !

>

> >

> > > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

> from

> > > keto and all is, knock on wood, going well. She had one seizure

> > > Tuesday night, the night of her first diet change, but nothing

> since

> > > then. Now for the weirdness....

> > >

> > > I checked her waking blood ketones (bhb) Tuesday morning before we

>

> > > started the wean. Remember, she was then on a 2:1 ratio with

> > > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

> her

> > > normal waking ketones on 4:1. What on earth???

> > >

> > > It gets better. I talked to our dietician and we decided to get a

>

> > > bedtime BHB also, to just see if maybe the extra food during the

> day

> > > and then no food overnight was doing something. I checked her 2

> 1/2

> > > hours after her last meal last night, also after a day of

> unlimited

> > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> ketones

> > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> 4:1

> > > ratio.

> > >

> > > What on earth is going on? I think I posted a while back that the

>

> > > weekend before we initiated the diet I did a " trial run " with the

> > > urine ketosrix and Langan registered large ketones. I was

> confused

> > > about that but her dietician at the time said it was b/c of the

> > > sniffles she had and that it was a good sign that she would go

> into

> > > ketosis easily. Our current dietician says no way, and from what

> I

> > > have learned over these past 9 months I have to agree with her.

> So

> > > what is up with this? Is there some condition that could cause

> > > Langan to be in ketosis naturally? Could this be a clue to her

> > > seizures? I am so confused!!

> > >

> > > Thanks!

> > >

> > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > > ratio but undertaking rapid keto wean due to severe persistent

> > > metabolic acidosis, but the ketones keep coming!

> > >

> > > " 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

> > >

September 2, 2004

langansmom wrote:

> I guess I'm hoping it is her body hanging onto ketosis, except for

> that pre-diet urine test and for the fact that ketones are going UP

> instead of staying the same or decreasing. I probably need to just

> stay off the internet and let the doctors do the digging- there are

> lots of nasty disorders out there.... Most don't fit Langan's

> development- slow but going forward instead of regression, but it is

> still scary to see some of them!

(((((())))))

Hang in there and just so you know, my view of the world, the more clues

are kiddos give us, the better! We have a PILE of clues from Jess,

problem is have not yet found the person who can put them all together

)

But yes I would agree, stop searching for the worst, never an optimist

or a pessimist, I say, just a realist. You don't have enough info yet

so you are just speculating, which can be dangerous for the mental

health. You need some time at the lower ratio.

So are you completely off the diet now?? If so, I would test urine and

bhb once a week and go for at least 3 weeks before you think you " know "

anything.

Jess is good, thanks for asking. Have been asking myself how long I

would stay on keto board But old habits die hard, took me a week to

put scale away after stopped weighing, another week to take mixer off

the counter where it had sat for 6+ years.........LOL

Anyway now I will have to stick around for Langan......and

......need to make sure stays okay..........LOLOL

You get it, I know

>

> Thanks! I hope all is well with !

>

> >

> > > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

> from

> > > keto and all is, knock on wood, going well. She had one seizure

> > > Tuesday night, the night of her first diet change, but nothing

> since

> > > then. Now for the weirdness....

> > >

> > > I checked her waking blood ketones (bhb) Tuesday morning before we

>

> > > started the wean. Remember, she was then on a 2:1 ratio with

> > > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

> her

> > > normal waking ketones on 4:1. What on earth???

> > >

> > > It gets better. I talked to our dietician and we decided to get a

>

> > > bedtime BHB also, to just see if maybe the extra food during the

> day

> > > and then no food overnight was doing something. I checked her 2

> 1/2

> > > hours after her last meal last night, also after a day of

> unlimited

> > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> ketones

> > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> 4:1

> > > ratio.

> > >

> > > What on earth is going on? I think I posted a while back that the

>

> > > weekend before we initiated the diet I did a " trial run " with the

> > > urine ketosrix and Langan registered large ketones. I was

> confused

> > > about that but her dietician at the time said it was b/c of the

> > > sniffles she had and that it was a good sign that she would go

> into

> > > ketosis easily. Our current dietician says no way, and from what

> I

> > > have learned over these past 9 months I have to agree with her.

> So

> > > what is up with this? Is there some condition that could cause

> > > Langan to be in ketosis naturally? Could this be a clue to her

> > > seizures? I am so confused!!

> > >

> > > Thanks!

> > >

> > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > > ratio but undertaking rapid keto wean due to severe persistent

> > > metabolic acidosis, but the ketones keep coming!

> > >

> > > " 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

> > >

September 2, 2004

langansmom wrote:

> I guess I'm hoping it is her body hanging onto ketosis, except for

> that pre-diet urine test and for the fact that ketones are going UP

> instead of staying the same or decreasing. I probably need to just

> stay off the internet and let the doctors do the digging- there are

> lots of nasty disorders out there.... Most don't fit Langan's

> development- slow but going forward instead of regression, but it is

> still scary to see some of them!

(((((())))))

Hang in there and just so you know, my view of the world, the more clues

are kiddos give us, the better! We have a PILE of clues from Jess,

problem is have not yet found the person who can put them all together

)

But yes I would agree, stop searching for the worst, never an optimist

or a pessimist, I say, just a realist. You don't have enough info yet

so you are just speculating, which can be dangerous for the mental

health. You need some time at the lower ratio.

So are you completely off the diet now?? If so, I would test urine and

bhb once a week and go for at least 3 weeks before you think you " know "

anything.

Jess is good, thanks for asking. Have been asking myself how long I

would stay on keto board But old habits die hard, took me a week to

put scale away after stopped weighing, another week to take mixer off

the counter where it had sat for 6+ years.........LOL

Anyway now I will have to stick around for Langan......and

......need to make sure stays okay..........LOLOL

You get it, I know

>

> Thanks! I hope all is well with !

>

> >

> > > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

> from

> > > keto and all is, knock on wood, going well. She had one seizure

> > > Tuesday night, the night of her first diet change, but nothing

> since

> > > then. Now for the weirdness....

> > >

> > > I checked her waking blood ketones (bhb) Tuesday morning before we

>

> > > started the wean. Remember, she was then on a 2:1 ratio with

> > > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

> her

> > > normal waking ketones on 4:1. What on earth???

> > >

> > > It gets better. I talked to our dietician and we decided to get a

>

> > > bedtime BHB also, to just see if maybe the extra food during the

> day

> > > and then no food overnight was doing something. I checked her 2

> 1/2

> > > hours after her last meal last night, also after a day of

> unlimited

> > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> ketones

> > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> 4:1

> > > ratio.

> > >

> > > What on earth is going on? I think I posted a while back that the

>

> > > weekend before we initiated the diet I did a " trial run " with the

> > > urine ketosrix and Langan registered large ketones. I was

> confused

> > > about that but her dietician at the time said it was b/c of the

> > > sniffles she had and that it was a good sign that she would go

> into

> > > ketosis easily. Our current dietician says no way, and from what

> I

> > > have learned over these past 9 months I have to agree with her.

> So

> > > what is up with this? Is there some condition that could cause

> > > Langan to be in ketosis naturally? Could this be a clue to her

> > > seizures? I am so confused!!

> > >

> > > Thanks!

> > >

> > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

> > > ratio but undertaking rapid keto wean due to severe persistent

> > > metabolic acidosis, but the ketones keep coming!

> > >

> > > " 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

> > >

September 2, 2004

PS What do you think of this - Jess' bloodwork off diet - bicarb is just

above high end of normal but ph is still acidic (7.336 - normal range is

7.35-7.42). Strange kiddos, ours......

mmc@... wrote:

> langansmom wrote:

>

> > I guess I'm hoping it is her body hanging onto ketosis, except for

> > that pre-diet urine test and for the fact that ketones are going UP

> > instead of staying the same or decreasing. I probably need to just

> > stay off the internet and let the doctors do the digging- there are

> > lots of nasty disorders out there.... Most don't fit Langan's

> > development- slow but going forward instead of regression, but it is

>

> > still scary to see some of them!

>

> (((((())))))

> Hang in there and just so you know, my view of the world, the more

> clues

> are kiddos give us, the better! We have a PILE of clues from Jess,

> problem is have not yet found the person who can put them all together

>

> )

> But yes I would agree, stop searching for the worst, never an optimist

>

> or a pessimist, I say, just a realist. You don't have enough info yet

>

> so you are just speculating, which can be dangerous for the mental

> health. You need some time at the lower ratio.

> So are you completely off the diet now?? If so, I would test urine and

>

> bhb once a week and go for at least 3 weeks before you think you

> " know "

> anything.

> Jess is good, thanks for asking. Have been asking myself how long I

> would stay on keto board But old habits die hard, took me a week

> to

> put scale away after stopped weighing, another week to take mixer off

> the counter where it had sat for 6+ years.........LOL

> Anyway now I will have to stick around for Langan......and

> ......need to make sure stays okay..........LOLOL

> You get it, I know

>

> >

> > Thanks! I hope all is well with !

> >

> > >

> > > > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

>

> > from

> > > > keto and all is, knock on wood, going well. She had one seizure

>

> > > > Tuesday night, the night of her first diet change, but nothing

> > since

> > > > then. Now for the weirdness....

> > > >

> > > > I checked her waking blood ketones (bhb) Tuesday morning before

> we

> >

> > > > started the wean. Remember, she was then on a 2:1 ratio with

> > > > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

>

> > her

> > > > normal waking ketones on 4:1. What on earth???

> > > >

> > > > It gets better. I talked to our dietician and we decided to get

> a

> >

> > > > bedtime BHB also, to just see if maybe the extra food during the

>

> > day

> > > > and then no food overnight was doing something. I checked her 2

>

> > 1/2

> > > > hours after her last meal last night, also after a day of

> > unlimited

> > > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> > ketones

> > > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> > 4:1

> > > > ratio.

> > > >

> > > > What on earth is going on? I think I posted a while back that

> the

> >

> > > > weekend before we initiated the diet I did a " trial run " with

> the

> > > > urine ketosrix and Langan registered large ketones. I was

> > confused

> > > > about that but her dietician at the time said it was b/c of the

> > > > sniffles she had and that it was a good sign that she would go

> > into

> > > > ketosis easily. Our current dietician says no way, and from

> what

> > I

> > > > have learned over these past 9 months I have to agree with her.

> > So

> > > > what is up with this? Is there some condition that could cause

> > > > Langan to be in ketosis naturally? Could this be a clue to her

> > > > seizures? I am so confused!!

> > > >

> > > > Thanks!

> > > >

> > > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

>

> > > > ratio but undertaking rapid keto wean due to severe persistent

> > > > metabolic acidosis, but the ketones keep coming!

> > > >

> > > > " 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

> > > >

September 2, 2004

PS What do you think of this - Jess' bloodwork off diet - bicarb is just

above high end of normal but ph is still acidic (7.336 - normal range is

7.35-7.42). Strange kiddos, ours......

mmc@... wrote:

> langansmom wrote:

>

> > I guess I'm hoping it is her body hanging onto ketosis, except for

> > that pre-diet urine test and for the fact that ketones are going UP

> > instead of staying the same or decreasing. I probably need to just

> > stay off the internet and let the doctors do the digging- there are

> > lots of nasty disorders out there.... Most don't fit Langan's

> > development- slow but going forward instead of regression, but it is

>

> > still scary to see some of them!

>

> (((((())))))

> Hang in there and just so you know, my view of the world, the more

> clues

> are kiddos give us, the better! We have a PILE of clues from Jess,

> problem is have not yet found the person who can put them all together

>

> )

> But yes I would agree, stop searching for the worst, never an optimist

>

> or a pessimist, I say, just a realist. You don't have enough info yet

>

> so you are just speculating, which can be dangerous for the mental

> health. You need some time at the lower ratio.

> So are you completely off the diet now?? If so, I would test urine and

>

> bhb once a week and go for at least 3 weeks before you think you

> " know "

> anything.

> Jess is good, thanks for asking. Have been asking myself how long I

> would stay on keto board But old habits die hard, took me a week

> to

> put scale away after stopped weighing, another week to take mixer off

> the counter where it had sat for 6+ years.........LOL

> Anyway now I will have to stick around for Langan......and

> ......need to make sure stays okay..........LOLOL

> You get it, I know

>

> >

> > Thanks! I hope all is well with !

> >

> > >

> > > > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

>

> > from

> > > > keto and all is, knock on wood, going well. She had one seizure

>

> > > > Tuesday night, the night of her first diet change, but nothing

> > since

> > > > then. Now for the weirdness....

> > > >

> > > > I checked her waking blood ketones (bhb) Tuesday morning before

> we

> >

> > > > started the wean. Remember, she was then on a 2:1 ratio with

> > > > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

>

> > her

> > > > normal waking ketones on 4:1. What on earth???

> > > >

> > > > It gets better. I talked to our dietician and we decided to get

> a

> >

> > > > bedtime BHB also, to just see if maybe the extra food during the

>

> > day

> > > > and then no food overnight was doing something. I checked her 2

>

> > 1/2

> > > > hours after her last meal last night, also after a day of

> > unlimited

> > > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> > ketones

> > > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> > 4:1

> > > > ratio.

> > > >

> > > > What on earth is going on? I think I posted a while back that

> the

> >

> > > > weekend before we initiated the diet I did a " trial run " with

> the

> > > > urine ketosrix and Langan registered large ketones. I was

> > confused

> > > > about that but her dietician at the time said it was b/c of the

> > > > sniffles she had and that it was a good sign that she would go

> > into

> > > > ketosis easily. Our current dietician says no way, and from

> what

> > I

> > > > have learned over these past 9 months I have to agree with her.

> > So

> > > > what is up with this? Is there some condition that could cause

> > > > Langan to be in ketosis naturally? Could this be a clue to her

> > > > seizures? I am so confused!!

> > > >

> > > > Thanks!

> > > >

> > > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

>

> > > > ratio but undertaking rapid keto wean due to severe persistent

> > > > metabolic acidosis, but the ketones keep coming!

> > > >

> > > > " 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

> > > >

September 2, 2004

PS What do you think of this - Jess' bloodwork off diet - bicarb is just

above high end of normal but ph is still acidic (7.336 - normal range is

7.35-7.42). Strange kiddos, ours......

mmc@... wrote:

> langansmom wrote:

>

> > I guess I'm hoping it is her body hanging onto ketosis, except for

> > that pre-diet urine test and for the fact that ketones are going UP

> > instead of staying the same or decreasing. I probably need to just

> > stay off the internet and let the doctors do the digging- there are

> > lots of nasty disorders out there.... Most don't fit Langan's

> > development- slow but going forward instead of regression, but it is

>

> > still scary to see some of them!

>

> (((((())))))

> Hang in there and just so you know, my view of the world, the more

> clues

> are kiddos give us, the better! We have a PILE of clues from Jess,

> problem is have not yet found the person who can put them all together

>

> )

> But yes I would agree, stop searching for the worst, never an optimist

>

> or a pessimist, I say, just a realist. You don't have enough info yet

>

> so you are just speculating, which can be dangerous for the mental

> health. You need some time at the lower ratio.

> So are you completely off the diet now?? If so, I would test urine and

>

> bhb once a week and go for at least 3 weeks before you think you

> " know "

> anything.

> Jess is good, thanks for asking. Have been asking myself how long I

> would stay on keto board But old habits die hard, took me a week

> to

> put scale away after stopped weighing, another week to take mixer off

> the counter where it had sat for 6+ years.........LOL

> Anyway now I will have to stick around for Langan......and

> ......need to make sure stays okay..........LOLOL

> You get it, I know

>

> >

> > Thanks! I hope all is well with !

> >

> > >

> > > > Hello all. Well, we are in day #3 of Langan's 8 day rapid wean

>

> > from

> > > > keto and all is, knock on wood, going well. She had one seizure

>

> > > > Tuesday night, the night of her first diet change, but nothing

> > since

> > > > then. Now for the weirdness....

> > > >

> > > > I checked her waking blood ketones (bhb) Tuesday morning before

> we

> >

> > > > started the wean. Remember, she was then on a 2:1 ratio with

> > > > unlimited fluids for over 2 weeks. 3.8!!! That was higher than

>

> > her

> > > > normal waking ketones on 4:1. What on earth???

> > > >

> > > > It gets better. I talked to our dietician and we decided to get

> a

> >

> > > > bedtime BHB also, to just see if maybe the extra food during the

>

> > day

> > > > and then no food overnight was doing something. I checked her 2

>

> > 1/2

> > > > hours after her last meal last night, also after a day of

> > unlimited

> > > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> > ketones

> > > > at best. 5.0!!!!! Again, higher than we saw at bedtime on the

> > 4:1

> > > > ratio.

> > > >

> > > > What on earth is going on? I think I posted a while back that

> the

> >

> > > > weekend before we initiated the diet I did a " trial run " with

> the

> > > > urine ketosrix and Langan registered large ketones. I was

> > confused

> > > > about that but her dietician at the time said it was b/c of the

> > > > sniffles she had and that it was a good sign that she would go

> > into

> > > > ketosis easily. Our current dietician says no way, and from

> what

> > I

> > > > have learned over these past 9 months I have to agree with her.

> > So

> > > > what is up with this? Is there some condition that could cause

> > > > Langan to be in ketosis naturally? Could this be a clue to her

> > > > seizures? I am so confused!!

> > > >

> > > > Thanks!

> > > >

> > > > , mom to Langan, 2 yrs old and keto kid since 11/03; on 2:1

>

> > > > ratio but undertaking rapid keto wean due to severe persistent

> > > > metabolic acidosis, but the ketones keep coming!

> > > >

> > > > " 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

> > > >

September 2, 2004

,

Hmmm. These kids never make it simple, do they?? How long has she

been off keto now? Could you be seeing the effects of the wean in

the bicarbs but still not all the way there with the acidity? Did

you have pre-diet blood gasses? (We didn't- ugh. Kicking myself).

I usually rely on you and for all this complicated stuff, so

maybe will see this and throw in her two cents!!

And I know exactly what you mean about not being able to let go of

this group. It has been such an amazing support to us, and I have

made so many friends here. Plus, if I can share just a little of

what I have learned with the new parents then I'll feel like I am

giving back to the group that kept us above water. And, of course, I

have to check in on all my favorite kids!!!

> > > >

> > > > > Hello all. Well, we are in day #3 of Langan's 8 day rapid

wean

> >

> > > from

> > > > > keto and all is, knock on wood, going well. She had one

seizure

> >

> > > > > Tuesday night, the night of her first diet change, but

nothing

> > > since

> > > > > then. Now for the weirdness....

> > > > >

> > > > > I checked her waking blood ketones (bhb) Tuesday morning

before

> > we

> > >

> > > > > started the wean. Remember, she was then on a 2:1 ratio

with

> > > > > unlimited fluids for over 2 weeks. 3.8!!! That was higher

than

> >

> > > her

> > > > > normal waking ketones on 4:1. What on earth???

> > > > >

> > > > > It gets better. I talked to our dietician and we decided

to get

> > a

> > >

> > > > > bedtime BHB also, to just see if maybe the extra food

during the

> >

> > > day

> > > > > and then no food overnight was doing something. I checked

her 2

> >

> > > 1/2

> > > > > hours after her last meal last night, also after a day of

> > > unlimited

> > > > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> > > ketones

> > > > > at best. 5.0!!!!! Again, higher than we saw at bedtime on

the

> > > 4:1

> > > > > ratio.

> > > > >

> > > > > What on earth is going on? I think I posted a while back

that

> > the

> > >

> > > > > weekend before we initiated the diet I did a " trial run "

with

> > the

> > > > > urine ketosrix and Langan registered large ketones. I was

> > > confused

> > > > > about that but her dietician at the time said it was b/c of

the

> > > > > sniffles she had and that it was a good sign that she would

go

> > > into

> > > > > ketosis easily. Our current dietician says no way, and from

> > what

> > > I

> > > > > have learned over these past 9 months I have to agree with

her.

> > > So

> > > > > what is up with this? Is there some condition that could

cause

> > > > > Langan to be in ketosis naturally? Could this be a clue to

her

> > > > > seizures? I am so confused!!

> > > > >

> > > > > Thanks!

> > > > >

> > > > > , mom to Langan, 2 yrs old and keto kid since 11/03;

on 2:1

> >

> > > > > ratio but undertaking rapid keto wean due to severe

persistent

> > > > > metabolic acidosis, but the ketones keep coming!

> > > > >

> > > > > " 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

> > > > >

September 2, 2004

,

Hmmm. These kids never make it simple, do they?? How long has she

been off keto now? Could you be seeing the effects of the wean in

the bicarbs but still not all the way there with the acidity? Did

you have pre-diet blood gasses? (We didn't- ugh. Kicking myself).

I usually rely on you and for all this complicated stuff, so

maybe will see this and throw in her two cents!!

And I know exactly what you mean about not being able to let go of

this group. It has been such an amazing support to us, and I have

made so many friends here. Plus, if I can share just a little of

what I have learned with the new parents then I'll feel like I am

giving back to the group that kept us above water. And, of course, I

have to check in on all my favorite kids!!!

> > > >

> > > > > Hello all. Well, we are in day #3 of Langan's 8 day rapid

wean

> >

> > > from

> > > > > keto and all is, knock on wood, going well. She had one

seizure

> >

> > > > > Tuesday night, the night of her first diet change, but

nothing

> > > since

> > > > > then. Now for the weirdness....

> > > > >

> > > > > I checked her waking blood ketones (bhb) Tuesday morning

before

> > we

> > >

> > > > > started the wean. Remember, she was then on a 2:1 ratio

with

> > > > > unlimited fluids for over 2 weeks. 3.8!!! That was higher

than

> >

> > > her

> > > > > normal waking ketones on 4:1. What on earth???

> > > > >

> > > > > It gets better. I talked to our dietician and we decided

to get

> > a

> > >

> > > > > bedtime BHB also, to just see if maybe the extra food

during the

> >

> > > day

> > > > > and then no food overnight was doing something. I checked

her 2

> >

> > > 1/2

> > > > > hours after her last meal last night, also after a day of

> > > unlimited

> > > > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> > > ketones

> > > > > at best. 5.0!!!!! Again, higher than we saw at bedtime on

the

> > > 4:1

> > > > > ratio.

> > > > >

> > > > > What on earth is going on? I think I posted a while back

that

> > the

> > >

> > > > > weekend before we initiated the diet I did a " trial run "

with

> > the

> > > > > urine ketosrix and Langan registered large ketones. I was

> > > confused

> > > > > about that but her dietician at the time said it was b/c of

the

> > > > > sniffles she had and that it was a good sign that she would

go

> > > into

> > > > > ketosis easily. Our current dietician says no way, and from

> > what

> > > I

> > > > > have learned over these past 9 months I have to agree with

her.

> > > So

> > > > > what is up with this? Is there some condition that could

cause

> > > > > Langan to be in ketosis naturally? Could this be a clue to

her

> > > > > seizures? I am so confused!!

> > > > >

> > > > > Thanks!

> > > > >

> > > > > , mom to Langan, 2 yrs old and keto kid since 11/03;

on 2:1

> >

> > > > > ratio but undertaking rapid keto wean due to severe

persistent

> > > > > metabolic acidosis, but the ketones keep coming!

> > > > >

> > > > > " 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

> > > > >

September 2, 2004

,

Hmmm. These kids never make it simple, do they?? How long has she

been off keto now? Could you be seeing the effects of the wean in

the bicarbs but still not all the way there with the acidity? Did

you have pre-diet blood gasses? (We didn't- ugh. Kicking myself).

I usually rely on you and for all this complicated stuff, so

maybe will see this and throw in her two cents!!

And I know exactly what you mean about not being able to let go of

this group. It has been such an amazing support to us, and I have

made so many friends here. Plus, if I can share just a little of

what I have learned with the new parents then I'll feel like I am

giving back to the group that kept us above water. And, of course, I

have to check in on all my favorite kids!!!

> > > >

> > > > > Hello all. Well, we are in day #3 of Langan's 8 day rapid

wean

> >

> > > from

> > > > > keto and all is, knock on wood, going well. She had one

seizure

> >

> > > > > Tuesday night, the night of her first diet change, but

nothing

> > > since

> > > > > then. Now for the weirdness....

> > > > >

> > > > > I checked her waking blood ketones (bhb) Tuesday morning

before

> > we

> > >

> > > > > started the wean. Remember, she was then on a 2:1 ratio

with

> > > > > unlimited fluids for over 2 weeks. 3.8!!! That was higher

than

> >

> > > her

> > > > > normal waking ketones on 4:1. What on earth???

> > > > >

> > > > > It gets better. I talked to our dietician and we decided

to get

> > a

> > >

> > > > > bedtime BHB also, to just see if maybe the extra food

during the

> >

> > > day

> > > > > and then no food overnight was doing something. I checked

her 2

> >

> > > 1/2

> > > > > hours after her last meal last night, also after a day of

> > > unlimited

> > > > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> > > ketones

> > > > > at best. 5.0!!!!! Again, higher than we saw at bedtime on

the

> > > 4:1

> > > > > ratio.

> > > > >

> > > > > What on earth is going on? I think I posted a while back

that

> > the

> > >

> > > > > weekend before we initiated the diet I did a " trial run "

with

> > the

> > > > > urine ketosrix and Langan registered large ketones. I was

> > > confused

> > > > > about that but her dietician at the time said it was b/c of

the

> > > > > sniffles she had and that it was a good sign that she would

go

> > > into

> > > > > ketosis easily. Our current dietician says no way, and from

> > what

> > > I

> > > > > have learned over these past 9 months I have to agree with

her.

> > > So

> > > > > what is up with this? Is there some condition that could

cause

> > > > > Langan to be in ketosis naturally? Could this be a clue to

her

> > > > > seizures? I am so confused!!

> > > > >

> > > > > Thanks!

> > > > >

> > > > > , mom to Langan, 2 yrs old and keto kid since 11/03;

on 2:1

> >

> > > > > ratio but undertaking rapid keto wean due to severe

persistent

> > > > > metabolic acidosis, but the ketones keep coming!

> > > > >

> > > > > " 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

> > > > >

September 3, 2004

langansmom wrote:

> ,

>

> Hmmm. These kids never make it simple, do they?? How long has she

> been off keto now?

We stopped weighing the end of June. Thats when the ketones disappeared

in the urine. But I did try to keep starches down at first and gradually

let them back in. That took about six weeks, getting more liberal every

week. So by the time she had the bloodwork would have been another week

after being on a fully " normal " diet, minus the heavy duty sugar items

> Could you be seeing the effects of the wean in

> the bicarbs but still not all the way there with the acidity? Did

> you have pre-diet blood gasses? (We didn't- ugh. Kicking myself).

Well " they " do, but I don't. I did ask at one point, many moons ago,

whether her blood gasses went alkaline when she was in a seizure cluster

pre-diet. Neuro nurse was suppose to check, took her foooooooorever,

then at one point she said no,, but I would like to see them myself.

She is still on a tiny tiny amount of diamox, it was only added to diet

to make her more acidic but neuro wants to leave in place until we get

through next seizure month, which is November. So I suppose that might

explain it......just though it was wierd.

So I am all confused, what ratio is Langan on now??

> I usually rely on you and for all this complicated stuff, so

> maybe will see this and throw in her two cents!!

>

> And I know exactly what you mean about not being able to let go of

> this group. It has been such an amazing support to us, and I have

> made so many friends here. Plus, if I can share just a little of

> what I have learned with the new parents then I'll feel like I am

> giving back to the group that kept us above water. And, of course, I

> have to check in on all my favorite kids!!!

>

> > > > >

> > > > > > Hello all. Well, we are in day #3 of Langan's 8 day rapid

> wean

> > >

> > > > from

> > > > > > keto and all is, knock on wood, going well. She had one

> seizure

> > >

> > > > > > Tuesday night, the night of her first diet change, but

> nothing

> > > > since

> > > > > > then. Now for the weirdness....

> > > > > >

> > > > > > I checked her waking blood ketones (bhb) Tuesday morning

> before

> > > we

> > > >

> > > > > > started the wean. Remember, she was then on a 2:1 ratio

> with

> > > > > > unlimited fluids for over 2 weeks. 3.8!!! That was higher

> than

> > >

> > > > her

> > > > > > normal waking ketones on 4:1. What on earth???

> > > > > >

> > > > > > It gets better. I talked to our dietician and we decided

> to get

> > > a

> > > >

> > > > > > bedtime BHB also, to just see if maybe the extra food

> during the

> > >

> > > > day

> > > > > > and then no food overnight was doing something. I checked

> her 2

> > >

> > > > 1/2

> > > > > > hours after her last meal last night, also after a day of

> > > > unlimited

> > > > > > meats and 1/2 of the fats of the 2:1 ratio, expecting trace

> > > > ketones

> > > > > > at best. 5.0!!!!! Again, higher than we saw at bedtime on

> the

> > > > 4:1

> > > > > > ratio.

> > > > > >

> > > > > > What on earth is going on? I think I posted a while back

> that

> > > the

> > > >

> > > > > > weekend before we initiated the diet I did a " trial run "

> with

> > > the

> > > > > > urine ketosrix and Langan registered large ketones. I was

> > > > confused

> > > > > > about that but her dietician at the time said it was b/c of

> the

> > > > > > sniffles she had and that it was a good sign that she would

> go

> > > > into

> > > > > > ketosis easily. Our current dietician says no way, and from

>

> > > what

> > > > I

> > > > > > have learned over these past 9 months I have to agree with

> her.

> > > > So

> > > > > > what is up with this? Is there some condition that could

> cause

> > > > > > Langan to be in ketosis naturally? Could this be a clue to

> her

> > > > > > seizures? I am so confused!!

> > > > > >

> > > > > > Thanks!

> > > > > >

> > > > > > , mom to Langan, 2 yrs old and keto kid since 11/03;

> on 2:1

> > >

> > > > > > ratio but undertaking rapid keto wean due to severe

> persistent

> > > > > > metabolic acidosis, but the ketones keep coming!

> > > > > >

> > > > > > " 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

> > > > > >

September 3, 2004