Re: tube feedings and getting started

[Guest guest]

Penny:

I would love it if it were that easy....I wanted to do the same thing

(the RCF formula), but the experienced Keto Parents on this board

talked me out of it for one good reason: you need an experienced

dietician to get the ratio, etc., right for your child because the

diet is VERY individual!

Besides, my son's Pediatrician told me that a dietician has to be the

one to write the prescription for the RCF formula, especially if you

are planning to have insurance cover it....there is that lengthy

process (differnt than with PediaSure, which my son is on right now,

too) of getting them to cover what is referred to as a " special

dietary metabolic formula " . They want to hear why you need it from a

GI/Nutritionist.

If you are still convinced that your local team wants to give it a

try, I found this webpage that offers an example of another tube-fed

child's plan with the RCF, which also includes 2 other products mixed-

in: http://olrs.ohio.gov/fsc/Other/history_form.pdf

Good luck!!!! We start the diet on 2/2/04.

Sue Ellen:)

> Hello All,

>

> I have a question!

> is is four 1/2 now and weighs in at 50 pounds.....remarkable

> since she has rett syndrome, anyway,,,

> we have been waiting and waiting for the Dr to get on board with

> our local hospital to get ALexis in to start the diet, with no hope

> in the future of this happening, seems as though we dont have a

> nutrisionists who is trained here in maine,,,

> anyway my question is this,,

>

> Presently she is tube fed with only pedisure and water thru the day

> with bolus and at night for a 12 hour drip,,, I think all the

> pedisure is causing more and more seizures and now they are drop

> seizures all day,,,,

>

> until the doc gets ready at hte hospital to do the fasting couldnt

> we jsut switch her over to the Ross formula and add the vitamins in

> for good measure ?

>

> I certainly could let her go at least 12 hours or alittle more at

> night without the drip of pedisure and then start her off on the

> ross formula until we could get in and do it right,,

> i think it would at least help to get rid of all the sugar and

carbs

> the pedisure is pumping into her...

>

> what do you folks think?

>

> our local peddie dr could always check her blood levels we have a

> visiting nurse who can draw blood for test along the way .

>

> I am just sick of waiting it has been 6 weeks now since our last

> hospital stay and if we dont do something soon her seizures are

> going to become un controlled again.

>

> thanks for the help

> Penny

[Guest guest]

Penny,

If your child is tube fed, it is easy to use Cal-Mag-Zinc from WholeLife

in California for the vitamins and minerals. It is for children on the

keto diet and is all-in-one liquid. There are a couple of formulas. We

use Cal-Mag-Zinc III. We also give milk of magnesia for reflux,

constipation and extra magnesium.

There are formulas in Dr. Freeman's book that would be fine for you to

try. You can generally use canola oil or safflower oil as well as cream

as a source of fat as it is less expensive and easily digested. I am not

sure what Ross formula is. If you are going on the ketogenic diet, you

may want to start at 3:1 ratio if your child is tube fed. You will have

to check calories closely as usually you will have a prescription for

too many calories. How many calories are you on now? Careful weighing is

necessary to determine the calories.

You must have had a lot of blood work done when you went into the

hospital. You can do a fast if you want. It sometimes is helpful to find

out right away if the diet will make difference. Otherwise if you start

weighing and giving the 3:1 ratio, you will likely have no trouble

getting into ketosis.

Good luck,

Bill

penny wrote:

> Hello All,

>

> I have a question!

> is is four 1/2 now and weighs in at 50 pounds.....remarkable

> since she has rett syndrome, anyway,,,

> we have been waiting and waiting for the Dr to get on board with

> our local hospital to get ALexis in to start the diet, with no hope

> in the future of this happening, seems as though we dont have a

> nutrisionists who is trained here in maine,,,

> anyway my question is this,,

>

> Presently she is tube fed with only pedisure and water thru the day

> with bolus and at night for a 12 hour drip,,, I think all the

> pedisure is causing more and more seizures and now they are drop

> seizures all day,,,,

>

> until the doc gets ready at hte hospital to do the fasting couldnt

> we jsut switch her over to the Ross formula and add the vitamins in

> for good measure ?

>

> I certainly could let her go at least 12 hours or alittle more at

> night without the drip of pedisure and then start her off on the

> ross formula until we could get in and do it right,,

> i think it would at least help to get rid of all the sugar and carbs

> the pedisure is pumping into her...

>

> what do you folks think?

>

> our local peddie dr could always check her blood levels we have a

> visiting nurse who can draw blood for test along the way .

>

> I am just sick of waiting it has been 6 weeks now since our last

> hospital stay and if we dont do something soon her seizures are

> going to become un controlled again.

>

> thanks for the help

> Penny

>

>

> " 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!

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>

>

>

>

>

[Guest guest]

> > Hello All,

> >

> > I have a question!

> > is is four 1/2 now and weighs in at 50 pounds.....remarkable

> > since she has rett syndrome, anyway,,,

> > we have been waiting and waiting for the Dr to get on board

with

> > our local hospital to get ALexis in to start the diet, with no

hope

> > in the future of this happening, seems as though we dont have a

> > nutrisionists who is trained here in maine,,,

> > anyway my question is this,,

> >

> > Presently she is tube fed with only pedisure and water thru the

day

> > with bolus and at night for a 12 hour drip,,, I think all the

> > pedisure is causing more and more seizures and now they are drop

> > seizures all day,,,,

> >

> > until the doc gets ready at hte hospital to do the fasting

couldnt

> > we jsut switch her over to the Ross formula and add the vitamins

in

> > for good measure ?

> >

> > I certainly could let her go at least 12 hours or alittle more

at

> > night without the drip of pedisure and then start her off on the

> > ross formula until we could get in and do it right,,

> > i think it would at least help to get rid of all the sugar and

> carbs

> > the pedisure is pumping into her...

> >

> > what do you folks think?

> >

> > our local peddie dr could always check her blood levels we have

a

> > visiting nurse who can draw blood for test along the way .

> >

> > I am just sick of waiting it has been 6 weeks now since our last

> > hospital stay and if we dont do something soon her seizures are

> > going to become un controlled again.

> >

> > thanks for the help

> > Penny

[Guest guest]

> > Hello All,

> >

> > I have a question!

> > is is four 1/2 now and weighs in at 50 pounds.....remarkable

> > since she has rett syndrome, anyway,,,

> > we have been waiting and waiting for the Dr to get on board

with

> > our local hospital to get ALexis in to start the diet, with no

hope

> > in the future of this happening, seems as though we dont have a

> > nutrisionists who is trained here in maine,,,

> > anyway my question is this,,

> >

> > Presently she is tube fed with only pedisure and water thru the

day

> > with bolus and at night for a 12 hour drip,,, I think all the

> > pedisure is causing more and more seizures and now they are drop

> > seizures all day,,,,

> >

> > until the doc gets ready at hte hospital to do the fasting

couldnt

> > we jsut switch her over to the Ross formula and add the vitamins

in

> > for good measure ?

> >

> > I certainly could let her go at least 12 hours or alittle more

at

> > night without the drip of pedisure and then start her off on the

> > ross formula until we could get in and do it right,,

> > i think it would at least help to get rid of all the sugar and

> carbs

> > the pedisure is pumping into her...

> >

> > what do you folks think?

> >

> > our local peddie dr could always check her blood levels we have

a

> > visiting nurse who can draw blood for test along the way .

> >

> > I am just sick of waiting it has been 6 weeks now since our last

> > hospital stay and if we dont do something soon her seizures are

> > going to become un controlled again.

> >

> > thanks for the help

> > Penny