Re: Looking for New Keto Center

[Guest guest]

Our keto neuro's position is

> that seizures during high ketosis means the diet will not work for

> your child. He is also a big fan of the meds and, when we tell him

> about seizure activity, always suggests new or more meds. Our

whole

> purpose here was to get OFF of the meds- if possible- so that is

not

> acceptable as a first resort.

*****,

If this is true, I think you are wise to look elsewhere. High

ketosis is not the best for some kids. True, others need it. If he

is a " big fan " of meds.... well, that says a lot right there. I

can't honestly think of one reason to try the diet if your goal isn't

to get of meds... which haven't worked anyway in 99% of our cases.

In the end, you may have to add some meds back to the diet. But you

gotta give the diet a chance alone first. You will never know what

it will or will not do for you, otherwise.

> She is still having at least as much (and generally bettre) success

> on keto and her lowered dose of lamictal as she had on multiple

> meds, but I would like to exhaust all possibilities before we

decide

> we cannot get total seizure control. She deserves that.

*****Right again!!! And you know the diet is doing something for

her. Could it do more??? Who knows?? But it's worth every effort

to find out.

>

> Does anyone have any recommendations for an accessible, user-

> friendly keto group in the Tennessee/Kentucky area. We are willing

> to travel. We talked to Hopkins but b/c they trained the keto

neuro

> here they were hesitant to put us on their list. I know Glenna has

> enjoyed the Cincinnati hospital. Any others? We are feeling a

> little overwhelmed....

>

****I don't know that area at all, but I don't think it would be a

bad idea to call Hopkins again, if you want to go there. Just

because they trained somebody (and in this case, it's hard to believe

they actually did) doesn't mean Hopkins can't see you. I would

really push if that's what you want.

Maybe Cincinnatt would be a good place, too. Wouldn't hurt to check

them out.

> Thanks!

****Good Luck!!

Cammie

>

> , mom to Langan, 18 months old and keto kid since 11/03

[Guest guest]

Our keto neuro's position is

> that seizures during high ketosis means the diet will not work for

> your child. He is also a big fan of the meds and, when we tell him

> about seizure activity, always suggests new or more meds. Our

whole

> purpose here was to get OFF of the meds- if possible- so that is

not

> acceptable as a first resort.

*****,

If this is true, I think you are wise to look elsewhere. High

ketosis is not the best for some kids. True, others need it. If he

is a " big fan " of meds.... well, that says a lot right there. I

can't honestly think of one reason to try the diet if your goal isn't

to get of meds... which haven't worked anyway in 99% of our cases.

In the end, you may have to add some meds back to the diet. But you

gotta give the diet a chance alone first. You will never know what

it will or will not do for you, otherwise.

> She is still having at least as much (and generally bettre) success

> on keto and her lowered dose of lamictal as she had on multiple

> meds, but I would like to exhaust all possibilities before we

decide

> we cannot get total seizure control. She deserves that.

*****Right again!!! And you know the diet is doing something for

her. Could it do more??? Who knows?? But it's worth every effort

to find out.

>

> Does anyone have any recommendations for an accessible, user-

> friendly keto group in the Tennessee/Kentucky area. We are willing

> to travel. We talked to Hopkins but b/c they trained the keto

neuro

> here they were hesitant to put us on their list. I know Glenna has

> enjoyed the Cincinnati hospital. Any others? We are feeling a

> little overwhelmed....

>

****I don't know that area at all, but I don't think it would be a

bad idea to call Hopkins again, if you want to go there. Just

because they trained somebody (and in this case, it's hard to believe

they actually did) doesn't mean Hopkins can't see you. I would

really push if that's what you want.

Maybe Cincinnatt would be a good place, too. Wouldn't hurt to check

them out.

> Thanks!

****Good Luck!!

Cammie

>

> , mom to Langan, 18 months old and keto kid since 11/03

[Guest guest]

We live in Syracuse, NY and found many local places that offered the

Diet, but we made the decision to go to Hopkins. Of course, I cannot

speak on the centers we never visited, but I can tell you that when

we were in Hopkins, we " knew we were in the right place " . They were

friendly, knowledgeable (right down to the nurses), and very

interested in the families' wishes throughout the process. We took

daily " classes " to learn how to " do the diet " , and had lots of time

for questions. They are also big on keeping in contact, which I like.

It sounds like you've had some less-than-wonderful experiences, and I

agree with what one of the other moms said....Even though you've

already called Hopkins, call again, speak to Pillas (the Diet

coordinator), tell her your concerns about the center you've already

been to, and maybe even speak with Jane McGrogan (the Dietician).

Perhaps there are suggestions she can give you right over the

phone?? I can tell you that the long drive was well worth it. $10 a

night at the Mc House certainly made the trip very do-

able, too! Good luck with whatever you choose to do.

Sue Ellen:)

> We are looking for a new keto center for Langan. We just feel like

> we are not getting ANY support from ours and, although we have been

> trying our best to do this on our own, I want to give Langan the

> best chance to have the diet work. Our keto neuro's position is

> that seizures during high ketosis means the diet will not work for

> your child. He is also a big fan of the meds and, when we tell him

> about seizure activity, always suggests new or more meds. Our

whole

> purpose here was to get OFF of the meds- if possible- so that is

not

> acceptable as a first resort. I have heard so much about so many

> different fine-tuning techniques and testing done by all of these

> other keto centers. I think it is worth looking into for Langan.

> She is still having at least as much (and generally bettre) success

> on keto and her lowered dose of lamictal as she had on multiple

> meds, but I would like to exhaust all possibilities before we

decide

> we cannot get total seizure control. She deserves that.

>

> Does anyone have any recommendations for an accessible, user-

> friendly keto group in the Tennessee/Kentucky area. We are willing

> to travel. We talked to Hopkins but b/c they trained the keto

neuro

> here they were hesitant to put us on their list. I know Glenna has

> enjoyed the Cincinnati hospital. Any others? We are feeling a

> little overwhelmed....

>

> Thanks!

>

> , mom to Langan, 18 months old and keto kid since 11/03

[Guest guest]

We live in Syracuse, NY and found many local places that offered the

Diet, but we made the decision to go to Hopkins. Of course, I cannot

speak on the centers we never visited, but I can tell you that when

we were in Hopkins, we " knew we were in the right place " . They were

friendly, knowledgeable (right down to the nurses), and very

interested in the families' wishes throughout the process. We took

daily " classes " to learn how to " do the diet " , and had lots of time

for questions. They are also big on keeping in contact, which I like.

It sounds like you've had some less-than-wonderful experiences, and I

agree with what one of the other moms said....Even though you've

already called Hopkins, call again, speak to Pillas (the Diet

coordinator), tell her your concerns about the center you've already

been to, and maybe even speak with Jane McGrogan (the Dietician).

Perhaps there are suggestions she can give you right over the

phone?? I can tell you that the long drive was well worth it. $10 a

night at the Mc House certainly made the trip very do-

able, too! Good luck with whatever you choose to do.

Sue Ellen:)

> We are looking for a new keto center for Langan. We just feel like

> we are not getting ANY support from ours and, although we have been

> trying our best to do this on our own, I want to give Langan the

> best chance to have the diet work. Our keto neuro's position is

> that seizures during high ketosis means the diet will not work for

> your child. He is also a big fan of the meds and, when we tell him

> about seizure activity, always suggests new or more meds. Our

whole

> purpose here was to get OFF of the meds- if possible- so that is

not

> acceptable as a first resort. I have heard so much about so many

> different fine-tuning techniques and testing done by all of these

> other keto centers. I think it is worth looking into for Langan.

> She is still having at least as much (and generally bettre) success

> on keto and her lowered dose of lamictal as she had on multiple

> meds, but I would like to exhaust all possibilities before we

decide

> we cannot get total seizure control. She deserves that.

>

> Does anyone have any recommendations for an accessible, user-

> friendly keto group in the Tennessee/Kentucky area. We are willing

> to travel. We talked to Hopkins but b/c they trained the keto

neuro

> here they were hesitant to put us on their list. I know Glenna has

> enjoyed the Cincinnati hospital. Any others? We are feeling a

> little overwhelmed....

>

> Thanks!

>

> , mom to Langan, 18 months old and keto kid since 11/03

[Guest guest]

, good luck in your search for a new keto center. We just

switched dietitians and are waiting for her to come up with a new

plan and plus it's actually keto team, whereas before we didn't have

one, just a dietitian. Thankfully, they are not suggesting meds to

us as we have said no to any drugs.

Satnam

> We are looking for a new keto center for Langan. We just feel like

> we are not getting ANY support from ours and, although we have been

> trying our best to do this on our own, I want to give Langan the

> best chance to have the diet work. Our keto neuro's position is

> that seizures during high ketosis means the diet will not work for

> your child. He is also a big fan of the meds and, when we tell him

> about seizure activity, always suggests new or more meds. Our

whole

> purpose here was to get OFF of the meds- if possible- so that is

not

> acceptable as a first resort. I have heard so much about so many

> different fine-tuning techniques and testing done by all of these

> other keto centers. I think it is worth looking into for Langan.

> She is still having at least as much (and generally bettre) success

> on keto and her lowered dose of lamictal as she had on multiple

> meds, but I would like to exhaust all possibilities before we

decide

> we cannot get total seizure control. She deserves that.

>

> Does anyone have any recommendations for an accessible, user-

> friendly keto group in the Tennessee/Kentucky area. We are willing

> to travel. We talked to Hopkins but b/c they trained the keto

neuro

> here they were hesitant to put us on their list. I know Glenna has

> enjoyed the Cincinnati hospital. Any others? We are feeling a

> little overwhelmed....

>

> Thanks!

>

> , mom to Langan, 18 months old and keto kid since 11/03