Re: Logan - Pete and Laurie/

[Guest guest]

,

Thank you for your reply. At this pont we really need encouragment

again. we are going to get Logan off meds and try finetuning the diet

without them. When he was seizure free and med free, the neuro had us

add back the topamax as soon as he has a few seizures. We really

regret doing that. If only we could have finetuned. We see alot of

reactions from the meds. For example, more seizures, no control even

at peak periods of the med, side effect are enhanced (phenobarb and

lack of any movement, I could go on and on. Thanks for your note, I

really needed it this morning.

Laurie

> Hi guys - re what you were told below - well that certainly isn't

the case with many folk - the 'not much fine-tuning required' bit -

only wish it were so !!

> If it was simply a matter of achieving good ketosis, lists like

this wouldn't be around for long

> Some kids become seizure free literally over night once they are

in ketosis - for some it days days/weeks/months - even a yr or more.

> Starting the diet with meds on board is almost always going to

cause a stumbling block - they just affect too many things to do with

the diet,(how they affect metabolism - so calorie needs, acidity,

etc) and vice versa, the state of ketosis in turn affects many meds.

> I'm sorry if you have to repeat - I haven't been round much to

read excatly where you guys are up to, but what meds is Logan

currently on? Do you see any pattern that is leading you to believe

they are possibly inducing seizures in him? Like as each one peaks do

you notice a definite pattern seizure wise? Either good or bad?

> Are his ketones v high? Like too high? I think you were reducing

cals to get his weight back on track? If so, the burning of the body

fat in this process may be giving him extra ketones that means he may

need a lower ratio until the weight issue has stabilised. The effect

of too high ketones if this has not been done, apart from causing

problems of it's own, including seizure control, can also affect the

meds and how they are metabolised - so you could end up with a med

toxicty factor thrown in there as well. Not easy to puzzle through,

been there for over 2 yrs now so I do know the frustrations yuu are

feeling, but keep in mind Logan's initial good response, and know

that there is every chance that you can work your way back there....

>

> ('s Mum)

>

>

> >Hi to all...

> >We were told that there should not have to be much fine tuning

to get

> >good ketosis and for the diet to work. Is this true? We thought

there

> >could be a lot of different changes over time. Needless to

say....we

> >were upset and wondering if it is true. BTW there has been 2

> >adjustments made in 2 months for Logan.

> >Thanks,

> >Laurie, Pete and Logan(2)

>

>

>

>

[Guest guest]

,

Thank you for your reply. At this pont we really need encouragment

again. we are going to get Logan off meds and try finetuning the diet

without them. When he was seizure free and med free, the neuro had us

add back the topamax as soon as he has a few seizures. We really

regret doing that. If only we could have finetuned. We see alot of

reactions from the meds. For example, more seizures, no control even

at peak periods of the med, side effect are enhanced (phenobarb and

lack of any movement, I could go on and on. Thanks for your note, I

really needed it this morning.

Laurie

> Hi guys - re what you were told below - well that certainly isn't

the case with many folk - the 'not much fine-tuning required' bit -

only wish it were so !!

> If it was simply a matter of achieving good ketosis, lists like

this wouldn't be around for long

> Some kids become seizure free literally over night once they are

in ketosis - for some it days days/weeks/months - even a yr or more.

> Starting the diet with meds on board is almost always going to

cause a stumbling block - they just affect too many things to do with

the diet,(how they affect metabolism - so calorie needs, acidity,

etc) and vice versa, the state of ketosis in turn affects many meds.

> I'm sorry if you have to repeat - I haven't been round much to

read excatly where you guys are up to, but what meds is Logan

currently on? Do you see any pattern that is leading you to believe

they are possibly inducing seizures in him? Like as each one peaks do

you notice a definite pattern seizure wise? Either good or bad?

> Are his ketones v high? Like too high? I think you were reducing

cals to get his weight back on track? If so, the burning of the body

fat in this process may be giving him extra ketones that means he may

need a lower ratio until the weight issue has stabilised. The effect

of too high ketones if this has not been done, apart from causing

problems of it's own, including seizure control, can also affect the

meds and how they are metabolised - so you could end up with a med

toxicty factor thrown in there as well. Not easy to puzzle through,

been there for over 2 yrs now so I do know the frustrations yuu are

feeling, but keep in mind Logan's initial good response, and know

that there is every chance that you can work your way back there....

>

> ('s Mum)

>

>

> >Hi to all...

> >We were told that there should not have to be much fine tuning

to get

> >good ketosis and for the diet to work. Is this true? We thought

there

> >could be a lot of different changes over time. Needless to

say....we

> >were upset and wondering if it is true. BTW there has been 2

> >adjustments made in 2 months for Logan.

> >Thanks,

> >Laurie, Pete and Logan(2)

>

>

>

>

[Guest guest]

,

Thank you for your reply. At this pont we really need encouragment

again. we are going to get Logan off meds and try finetuning the diet

without them. When he was seizure free and med free, the neuro had us

add back the topamax as soon as he has a few seizures. We really

regret doing that. If only we could have finetuned. We see alot of

reactions from the meds. For example, more seizures, no control even

at peak periods of the med, side effect are enhanced (phenobarb and

lack of any movement, I could go on and on. Thanks for your note, I

really needed it this morning.

Laurie

> Hi guys - re what you were told below - well that certainly isn't

the case with many folk - the 'not much fine-tuning required' bit -

only wish it were so !!

> If it was simply a matter of achieving good ketosis, lists like

this wouldn't be around for long

> Some kids become seizure free literally over night once they are

in ketosis - for some it days days/weeks/months - even a yr or more.

> Starting the diet with meds on board is almost always going to

cause a stumbling block - they just affect too many things to do with

the diet,(how they affect metabolism - so calorie needs, acidity,

etc) and vice versa, the state of ketosis in turn affects many meds.

> I'm sorry if you have to repeat - I haven't been round much to

read excatly where you guys are up to, but what meds is Logan

currently on? Do you see any pattern that is leading you to believe

they are possibly inducing seizures in him? Like as each one peaks do

you notice a definite pattern seizure wise? Either good or bad?

> Are his ketones v high? Like too high? I think you were reducing

cals to get his weight back on track? If so, the burning of the body

fat in this process may be giving him extra ketones that means he may

need a lower ratio until the weight issue has stabilised. The effect

of too high ketones if this has not been done, apart from causing

problems of it's own, including seizure control, can also affect the

meds and how they are metabolised - so you could end up with a med

toxicty factor thrown in there as well. Not easy to puzzle through,

been there for over 2 yrs now so I do know the frustrations yuu are

feeling, but keep in mind Logan's initial good response, and know

that there is every chance that you can work your way back there....

>

> ('s Mum)

>

>

> >Hi to all...

> >We were told that there should not have to be much fine tuning

to get

> >good ketosis and for the diet to work. Is this true? We thought

there

> >could be a lot of different changes over time. Needless to

say....we

> >were upset and wondering if it is true. BTW there has been 2

> >adjustments made in 2 months for Logan.

> >Thanks,

> >Laurie, Pete and Logan(2)

>

>

>

>