Re: searching for a new keto team

[Guest guest]

I would think you'd be fine with CHOP or Hopkins. I think I have a great

keto team too, but you'd need to drive as far as Boston. They're at

MassGeneral. Just in case....

Barb Swoyer, Jake's mom

searching for a new keto team

>

>

> Okay everyone, you all know I am not thrilled with the keto team I

> currently have and I know some of you have not had the best

> experiences with your teams either. But, I really feel like we need

> to make a switch. The more I read of your posts, the more I realize

> how much my keto team is lacking.

>

> I would like to hear from those of you who are really happy with

> your team. I need a team who is going to be more supportive and

> involved in this diet along with us. So, I've already talked to

> parents who love their keto teams from Cinncinatti(sp?) Children's

> Hospital,OH; Children's Hospital of Philly,PA; and of course s

> Hopkins. We live in New Castle, PA which is approximately 40 miles

> north of Pittsburgh,PA. I would be willing to travel to any of the

> above mentioned hospitals, so if there are anymore within this

> distance please let me know. I want to find a team that other

> PARENTS are thrilled about because you are the real experts!

>

> I have every intention of keeping Princess A on this diet for the

> next two years and I want the best team working with me. I don't

> believe in doing anything half-way or not to the best of my

> ability. Especially when it comes to MY GIRL!!!

>

> All input would be greatly appreciated!

>

> Thanks in advance!

>

>

> Mom to Princess Adrielle, keto-princess, seizure free since 11/5 &

> worth every effort to remain this way!!

>

>

>

>

>

>

> " 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]

Hi ,

My son started the diet at Hopkins and I don't know about other places

but I know they will not take children that have started the diet someplace

else.

Mike

_____

From: byhisgrace08

Sent: Monday, November 22, 2004 11:09 PM

To: ketogenic

Subject: searching for a new keto team

Okay everyone, you all know I am not thrilled with the keto team I

currently have and I know some of you have not had the best

experiences with your teams either. But, I really feel like we need

to make a switch. The more I read of your posts, the more I realize

how much my keto team is lacking.

I would like to hear from those of you who are really happy with

your team. I need a team who is going to be more supportive and

involved in this diet along with us. So, I've already talked to

parents who love their keto teams from Cinncinatti(sp?) Children's

Hospital,OH; Children's Hospital of Philly,PA; and of course s

Hopkins. We live in New Castle, PA which is approximately 40 miles

north of Pittsburgh,PA. I would be willing to travel to any of the

above mentioned hospitals, so if there are anymore within this

distance please let me know. I want to find a team that other

PARENTS are thrilled about because you are the real experts!

I have every intention of keeping Princess A on this diet for the

next two years and I want the best team working with me. I don't

believe in doing anything half-way or not to the best of my

ability. Especially when it comes to MY GIRL!!!

All input would be greatly appreciated!

Thanks in advance!

Mom to Princess Adrielle, keto-princess, seizure free since 11/5 &

worth every effort to remain this way!!

" 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]

Hi !

I'm so sorry you're unhappy with your team. Makes me mad for you!

We did our initiation at Hopkins. Before we went there we were also accepted to

a keto program at DC Children's. We are in . VA, so DC was closer. When I

talked to Hopkins they told me that if we initiated somewhere else that they

(Hopkins) would not help us w/fine tuning. The way I heard it was, go with us

in the beginning or we can't help you. I may have misunderstood!! The people

are wonderful and I can't imagine them turning anyone away - just thought I'd

let you know!

Good Luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

[Guest guest]

-

Leigh is correct regarding Hopkins. I would suggest staying clear of

Children's in DC. I love the hospital, as for as hospitals go, and I

love the neuro staff, but they are honestly not well equipped for the

diet. There is no real team to follow, anyone. They are getting much

better but I really feel they have a ways to go, especially if you have

a younger child on the diet. We loved the dietitian that helped us, but

there seemed to only be one. Great neuro staff, especially several of

the attendings.

mom to Ethan james

2/2003-4/2004

Re: searching for a new keto team

Hi !

I'm so sorry you're unhappy with your team. Makes me mad for you!

We did our initiation at Hopkins. Before we went there we were also

accepted to a keto program at DC Children's. We are in . VA, so DC

was closer. When I talked to Hopkins they told me that if we initiated

somewhere else that they (Hopkins) would not help us w/fine tuning. The

way I heard it was, go with us in the beginning or we can't help you. I

may have misunderstood!! The people are wonderful and I can't imagine

them turning anyone away - just thought I'd let you know!

Good Luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

" 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]

-

Leigh is correct regarding Hopkins. I would suggest staying clear of

Children's in DC. I love the hospital, as for as hospitals go, and I

love the neuro staff, but they are honestly not well equipped for the

diet. There is no real team to follow, anyone. They are getting much

better but I really feel they have a ways to go, especially if you have

a younger child on the diet. We loved the dietitian that helped us, but

there seemed to only be one. Great neuro staff, especially several of

the attendings.

mom to Ethan james

2/2003-4/2004

Re: searching for a new keto team

Hi !

I'm so sorry you're unhappy with your team. Makes me mad for you!

We did our initiation at Hopkins. Before we went there we were also

accepted to a keto program at DC Children's. We are in . VA, so DC

was closer. When I talked to Hopkins they told me that if we initiated

somewhere else that they (Hopkins) would not help us w/fine tuning. The

way I heard it was, go with us in the beginning or we can't help you. I

may have misunderstood!! The people are wonderful and I can't imagine

them turning anyone away - just thought I'd let you know!

Good Luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

" 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]

-

Leigh is correct regarding Hopkins. I would suggest staying clear of

Children's in DC. I love the hospital, as for as hospitals go, and I

love the neuro staff, but they are honestly not well equipped for the

diet. There is no real team to follow, anyone. They are getting much

better but I really feel they have a ways to go, especially if you have

a younger child on the diet. We loved the dietitian that helped us, but

there seemed to only be one. Great neuro staff, especially several of

the attendings.

mom to Ethan james

2/2003-4/2004

Re: searching for a new keto team

Hi !

I'm so sorry you're unhappy with your team. Makes me mad for you!

We did our initiation at Hopkins. Before we went there we were also

accepted to a keto program at DC Children's. We are in . VA, so DC

was closer. When I talked to Hopkins they told me that if we initiated

somewhere else that they (Hopkins) would not help us w/fine tuning. The

way I heard it was, go with us in the beginning or we can't help you. I

may have misunderstood!! The people are wonderful and I can't imagine

them turning anyone away - just thought I'd let you know!

Good Luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

" 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]

Your correct Leigh we started at Hopkins also and they will not take anyone

other than patients that they have started. My understanding was that this

has to do with the amount of patients that they had on the diet. They stay

very busy with their own patients and don't have time for others.

Mike

_____

From: leigh weikert

Sent: Tuesday, November 23, 2004 11:56 AM

To: ketogenic

Subject: Re: searching for a new keto team

Hi !

I'm so sorry you're unhappy with your team. Makes me mad for you!

We did our initiation at Hopkins. Before we went there we were also

accepted to a keto program at DC Children's. We are in . VA, so DC was

closer. When I talked to Hopkins they told me that if we initiated

somewhere else that they (Hopkins) would not help us w/fine tuning. The way

I heard it was, go with us in the beginning or we can't help you. I may

have misunderstood!! The people are wonderful and I can't imagine them

turning anyone away - just thought I'd let you know!

Good Luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

" 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]

Your correct Leigh we started at Hopkins also and they will not take anyone

other than patients that they have started. My understanding was that this

has to do with the amount of patients that they had on the diet. They stay

very busy with their own patients and don't have time for others.

Mike

_____

From: leigh weikert

Sent: Tuesday, November 23, 2004 11:56 AM

To: ketogenic

Subject: Re: searching for a new keto team

Hi !

I'm so sorry you're unhappy with your team. Makes me mad for you!

We did our initiation at Hopkins. Before we went there we were also

accepted to a keto program at DC Children's. We are in . VA, so DC was

closer. When I talked to Hopkins they told me that if we initiated

somewhere else that they (Hopkins) would not help us w/fine tuning. The way

I heard it was, go with us in the beginning or we can't help you. I may

have misunderstood!! The people are wonderful and I can't imagine them

turning anyone away - just thought I'd let you know!

Good Luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

" 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]

Your correct Leigh we started at Hopkins also and they will not take anyone

other than patients that they have started. My understanding was that this

has to do with the amount of patients that they had on the diet. They stay

very busy with their own patients and don't have time for others.

Mike

_____

From: leigh weikert

Sent: Tuesday, November 23, 2004 11:56 AM

To: ketogenic

Subject: Re: searching for a new keto team

Hi !

I'm so sorry you're unhappy with your team. Makes me mad for you!

We did our initiation at Hopkins. Before we went there we were also

accepted to a keto program at DC Children's. We are in . VA, so DC was

closer. When I talked to Hopkins they told me that if we initiated

somewhere else that they (Hopkins) would not help us w/fine tuning. The way

I heard it was, go with us in the beginning or we can't help you. I may

have misunderstood!! The people are wonderful and I can't imagine them

turning anyone away - just thought I'd let you know!

Good Luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

" 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]

Hi ,

we are practically neighbors.... we live up in Erie county, PA..... We, too,

went to Children's Hospital of Pittsburgh..... and we too felt our " team " was

basically lacking, for want of better words....

Although we tried to get into Hopkins, we have been unsuccessful in making

the switch. They told us that they don't take people who started elsewhere....

bummer....

I don't know for certain, but we've heard some good things about

Cleveland.... at least their epilepsy team, not specifically the ketogenic diet

aspect..... but you may want to look into this.... We, too, are thinking we may

investigate this option further..... Also, any info on the Columbus area?

Just thinking... good luck, and keep us posted.

, Colton's mom.... on diet since June, 2004

[Guest guest]

I live in Dayton. I don't think keto is an option in Columbus, so

don't bother looking there. We go to Cincinnati. Everyone we see

there is extremely nice, and we literally worship our doctor. But,

there are a few drawbacks. One, the doctor recently stated that he

will no longer regularly see patients. He will see all new

patients, and he will be in the office when appointments are

scheduled, but families will talk to his nurse practitioners,

instead. I would have a real problem with this if things weren't

going well. But, on the other hand, since I think the doctor is so

good, maybe I need to trust his judgement on this one? There are

other doctors at Cincy who do keto, too. The dieticians were very

good about convincing my son to try the diet, and they always call

back right away when I have questions. But, I didn't find them very

helpful in fussing and fiddling with my son's menus to maximize the

things he likes. My son is pretty picky about food, and I am

willing to bend over backwards to make his meals tasty. Perhaps they

just don't have the time to meet so many specific needs. If it you

have your own meal planner, this really isn't a problem. Despite

these drawbacks, I feel we are in very good hands at Cincinnati

Children's.

About Pittsburgh: there was family using that center last spring

who had a lot of trouble with the keto team there. I think they have

since dropped the diet. So, you are not first to express

reservations. Good luck finding a place to continue keto.

Gretchen

> Hi ,

> we are practically neighbors.... we live up in Erie county,

PA..... We, too,

> went to Children's Hospital of Pittsburgh..... and we too felt

our " team " was

> basically lacking, for want of better words....

>

> Although we tried to get into Hopkins, we have been unsuccessful

in making

> the switch. They told us that they don't take people who started

elsewhere....

> bummer....

>

> I don't know for certain, but we've heard some good things about

> Cleveland.... at least their epilepsy team, not specifically the

ketogenic diet

> aspect..... but you may want to look into this.... We, too, are

thinking we may

> investigate this option further..... Also, any info on the

Columbus area?

>

> Just thinking... good luck, and keep us posted.

> , Colton's mom.... on diet since June, 2004

[Guest guest]

Gretchen,

I am so surprised that your doctor at Cincy will no longer see you.

That sounds strange to me. We see Dr. Holder there, who I thought

was the main keto doc, and she personally spends over an hour with

us at each visit. Kathy was our dietician, and I found her very

helpful in creating menus whenever I needed them. I usually just

emailed her the ingredients I wanted or the meal idea and she would

call or email with the menus. She was very particular about us not

calculating our own menus- we used the meal planner that we bought

from Hopkins and when she checked the ratios with her mealplanner,

the ratios were all over the place. Maybe because Langan was still

having seizures, she insisted on doing the menus herself and us not

using a meal planner. I do think it helped us with seizure control,

although I know that many kids don't need the exactness that we

needed. And then, we never got to the point of doing our own menus

again because of the acidosis problem.

I cannot say enough about our Cincy team. I have never called them

once when they did not call back the same day- most of the time

within an hour or two of my call. And believe me, I call so much

that the switchboard operator knows my voice and asks how Langan is

doing. = ) They have fought with our insurance company to get them

to cover things after the fact, when I was having no luck. Everyone

there from the parking lot attendant to the neuros are personable

and caring. We would be lost without them! Our prior keto team and

neuros were a nightmare so we have been so thrilled with what we

have now. It is a long drive- 4 1/2 hours in good traffic- but

worth every second of it. I don't think Langan's acidosis would

have ever been diagnosed without them, and I know several other

parents who had been struggling for a diagnosis for years and then

were able to get one once they saw Dr. Holder. So there's my two

cents on Cincy....

Hope all is well!

, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned

due to persistent severe metabolic acidosis (now thought to be pre-

existing and exacerbated by the diet), but keto kid at heart forever

> > Hi ,

> > we are practically neighbors.... we live up in Erie county,

> PA..... We, too,

> > went to Children's Hospital of Pittsburgh..... and we too felt

> our " team " was

> > basically lacking, for want of better words....

> >

> > Although we tried to get into Hopkins, we have been unsuccessful

> in making

> > the switch. They told us that they don't take people who

started

> elsewhere....

> > bummer....

> >

> > I don't know for certain, but we've heard some good things about

> > Cleveland.... at least their epilepsy team, not specifically the

> ketogenic diet

> > aspect..... but you may want to look into this.... We, too, are

> thinking we may

> > investigate this option further..... Also, any info on the

> Columbus area?

> >

> > Just thinking... good luck, and keep us posted.

> > , Colton's mom.... on diet since June, 2004

[Guest guest]

Hi,

You have always raved about Cincy's Keto team, and for the most

part, I agree. I was hesitant about posting anything, because for

the most part, they have been great with us. My only real complaint

is this issue of not getting to meet with the doctor directly

starting next July. Kathy works with us, too. We used to think

Ethan was particularly sensitive to changes in the diet, so we were

very careful, too. Kathy checked the menus we made using my

husband's program and the ratios were right on target, so maybe that

is why she let us use it.She never was quite as helpful with us as

she was with you, but I always felt she wanted to be. I just

thought perhaps she had too many other things going on, and not a

lot of time for us. SHe always answers my calls right away, and

that is great.

We still haven't figured out Ethan's recent shaking episodes that

started a few weeks ago. No word on labs, yet. But they do seem to

clear up when I tighten up on the ratio (Back to a strict 3:1). I

guess that suggests seizure activity. We meet with the doctor

THursday for a regular appointment. I'm trying to schedule an EEG

for that day, too.

Call me next time you go to Cincy. We're in the Dayton phone book.

(Directory) I'd love to meet up with you.

I think of Langan a lot, and I hope seizures are at a minimum

(and medicine, too)

Gretchen

> > > Hi ,

> > > we are practically neighbors.... we live up in Erie county,

> > PA..... We, too,

> > > went to Children's Hospital of Pittsburgh..... and we too

felt

> > our " team " was

> > > basically lacking, for want of better words....

> > >

> > > Although we tried to get into Hopkins, we have been

unsuccessful

> > in making

> > > the switch. They told us that they don't take people who

> started

> > elsewhere....

> > > bummer....

> > >

> > > I don't know for certain, but we've heard some good things

about

> > > Cleveland.... at least their epilepsy team, not specifically

the

> > ketogenic diet

> > > aspect..... but you may want to look into this.... We, too,

are

> > thinking we may

> > > investigate this option further..... Also, any info on the

> > Columbus area?

> > >

> > > Just thinking... good luck, and keep us posted.

> > > , Colton's mom.... on diet since June, 2004