Re: Ketogenic diet and meds

[Guest guest]

Why do they not want pills in G-tube? We put ours do that to all the time, we've

never had problems. Is there something we're doing wrong? I think as long as you

dissolve pills in enough water it's okay.

Sent from my iPhone

>

> I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(purée) meals a day. His GI doctors are concerned because his pills are crushed

and administered by gtube. The tube is not intended for this use, but he cannot

take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

>

> Thanks for your help, Julissa

>

> Sent from my iPad

>

>

[Guest guest]

I think it is because he has 6 meds and 5 of these are administered 2x a day.

They also found a lot of residue in the one they removed. We pulverize and

dilute them, but I would love any tips. He has an emergency folly in right now

and giving him meds through it is very difficult. It gets clogged all the time.

J

Sent from my iPad

> Why do they not want pills in G-tube? We put ours do that to all the time,

we've never had problems. Is there something we're doing wrong? I think as long

as you dissolve pills in enough water it's okay.

>

> Sent from my iPhone

>

>

>

> >

> > I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(purée) meals a day. His GI doctors are concerned because his pills are crushed

and administered by gtube. The tube is not intended for this use, but he cannot

take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

> >

> > Thanks for your help, Julissa

> >

> > Sent from my iPad

> >

> >

>

>

[Guest guest]

You can find a compound pharmacist. You can asked them to omit any inactive

ingredient.

To: polymicrogyria

From: auburn715@...

Date: Fri, 20 Jul 2012 15:58:29 -0400

Subject: Ketogenic diet and meds

I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat

1.5 (purée) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but

he cannot take syrups due to the sugars in them and the sugar free syrups

contain sorbitol, which does have carbs. He eats very few carbs and we don't

want to waste them on sorbitol. Water does not make for a long shelf life and

sterile environment for the meds. Hasanyone had this problem and found a

solution. We re scared to put some in his food, because getting him to finally

eat was a struggle. I don't want him to stop eating.

Thanks for your help, Julissa

Sent from my iPad

[Guest guest]

are you flushing with a lot of warm water?

To: polymicrogyria

From: auburn715@...

Date: Fri, 20 Jul 2012 18:13:23 -0400

Subject: Re: Ketogenic diet and meds

I think it is because he has 6 meds and 5 of these are administered 2x a

day. They also found a lot of residue in the one they removed. We pulverize and

dilute them, but I would love any tips. He has an emergency folly in right now

and giving him meds through it is very difficult. It gets clogged all the time.

J

Sent from my iPad

> Why do they not want pills in G-tube? We put ours do that to all the time,

we've never had problems. Is there something we're doing wrong? I think as long

as you dissolve pills in enough water it's okay.

>

> Sent from my iPhone

>

>

>

> >

> > I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(purée) meals a day. His GI doctors are concerned because his pills are crushed

and administered by gtube. The tube is not intended for this use, but he cannot

take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

> >

> > Thanks for your help, Julissa

> >

> > Sent from my iPad

> >

> >

>

>

[Guest guest]

Yes. But he is on constant feed so it is hard on his stomach to put in too much

water. However, he is starting to eat more solids. Hopefully his feeding

schedule will soon change.

Sent from my iPad

>

> are you flushing with a lot of warm water?

>

> To: polymicrogyria

> From: auburn715@...

> Date: Fri, 20 Jul 2012 18:13:23 -0400

> Subject: Re: Ketogenic diet and meds

>

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> I think it is because he has 6 meds and 5 of these are administered 2x a

day. They also found a lot of residue in the one they removed. We pulverize and

dilute them, but I would love any tips. He has an emergency folly in right now

and giving him meds through it is very difficult. It gets clogged all the time.

J

>

>

>

> Sent from my iPad

>

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>

>

>

>

>

>> Why do they not want pills in G-tube? We put ours do that to all the time,

we've never had problems. Is there something we're doing wrong? I think as long

as you dissolve pills in enough water it's okay.

>

>>

>

>> Sent from my iPhone

>

>>

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>>

>

>>

>

>>>

>

>>> I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(pur�e) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but he

cannot take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

>

>>>

>

>>> Thanks for your help, Julissa

>

>>>

>

>>> Sent from my iPad

>

>>>

>

>>>

>

>>

>

>>

[Guest guest]

thanks. We have tried, but they can't use just water for numerous reasons.

The syrups have sugars and sorbitol still has carbs. If we use the syrup with

sorbitol the few carbs that he can eat with nutritional value would have to be

cut to even smaller amounts. Julissa

Sent from my iPad

>

>

> You can find a compound pharmacist. You can asked them to omit any inactive

ingredient.

> To: polymicrogyria

> From: auburn715@...

> Date: Fri, 20 Jul 2012 15:58:29 -0400

> Subject: Ketogenic diet and meds

>

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> I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat

1.5 (pur�e) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but

he cannot take syrups due to the sugars in them and the sugar free syrups

contain sorbitol, which does have carbs. He eats very few carbs and we don't

want to waste them on sorbitol. Water does not make for a long shelf life and

sterile environment for the meds. Hasanyone had this problem and found a

solution. We re scared to put some in his food, because getting him to finally

eat was a struggle. I don't want him to stop eating.

>

>

>

> Thanks for your help, Julissa

>

>

>

> Sent from my iPad

>

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>

[Guest guest]

My son was on the ketogenic diet years ago- However at the time my son did not

have a g-tube But now he does and we put all meds in hot water for long enough

to cool and all meds really break down- I was taught this trick at the hospital

but never looked into the stability of meds- I then flush with more water until

the syringe is completely clear. Now obviously Depakote sprinkles or other meds

with capsule would not be done like this- I am going to ask our pharmacist her

thoughts- I've been doing for years( hope it is ok) --- My son still eats by

mouth but i want to make sure he gets all his meds- nothing drops out or gets

tucked away. We also use to make these little cheese cakes with the eggs,

whipping cream etc. flavored with bickman flavors and it was a very special

treat- just some thoughts- it was a long time ago.....

Sue Rice

> thanks. We have tried, but they can't use just water for numerous reasons. The

syrups have sugars and sorbitol still has carbs. If we use the syrup with

sorbitol the few carbs that he can eat with nutritional value would have to be

cut to even smaller amounts. Julissa

>

> Sent from my iPad

>

>

>

> >

> >

> > You can find a compound pharmacist. You can asked them to omit any inactive

ingredient.

> > To: polymicrogyria My

>

> > From: auburn715@...

> > Date: Fri, 20 Jul 2012 15:58:29 -0400

> > Subject: Ketogenic diet and meds

> >

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> > I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(pur�e) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but he

cannot take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

> >

> >

> >

> > Thanks for your help, Julissa

> >

> >

> >

> > Sent from my iPad

> >

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[Guest guest]

Thanks for the recommendation and food ideas. I am always looking for treat.

Julissa

Sent from my iPad

> My son was on the ketogenic diet years ago- However at the time my son did not

have a g-tube But now he does and we put all meds in hot water for long enough

to cool and all meds really break down- I was taught this trick at the hospital

but never looked into the stability of meds- I then flush with more water until

the syringe is completely clear. Now obviously Depakote sprinkles or other meds

with capsule would not be done like this- I am going to ask our pharmacist her

thoughts- I've been doing for years( hope it is ok) --- My son still eats by

mouth but i want to make sure he gets all his meds- nothing drops out or gets

tucked away. We also use to make these little cheese cakes with the eggs,

whipping cream etc. flavored with bickman flavors and it was a very special

treat- just some thoughts- it was a long time ago.....

> Sue Rice

>

>

>

> > thanks. We have tried, but they can't use just water for numerous reasons.

The syrups have sugars and sorbitol still has carbs. If we use the syrup with

sorbitol the few carbs that he can eat with nutritional value would have to be

cut to even smaller amounts. Julissa

> >

> > Sent from my iPad

> >

> >

> >

> > >

> > >

> > > You can find a compound pharmacist. You can asked them to omit any

inactive ingredient.

> > > To: polymicrogyria My

> >

> > > From: auburn715@...

> > > Date: Fri, 20 Jul 2012 15:58:29 -0400

> > > Subject: Ketogenic diet and meds

> > >

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> > > I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(pur�e) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but he

cannot take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

> > >

> > >

> > >

> > > Thanks for your help, Julissa

> > >

> > >

> > >

> > > Sent from my iPad

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[Guest guest]

What are bickman flavors. Julissa

Sent from my iPad

> My son was on the ketogenic diet years ago- However at the time my son did not

have a g-tube But now he does and we put all meds in hot water for long enough

to cool and all meds really break down- I was taught this trick at the hospital

but never looked into the stability of meds- I then flush with more water until

the syringe is completely clear. Now obviously Depakote sprinkles or other meds

with capsule would not be done like this- I am going to ask our pharmacist her

thoughts- I've been doing for years( hope it is ok) --- My son still eats by

mouth but i want to make sure he gets all his meds- nothing drops out or gets

tucked away. We also use to make these little cheese cakes with the eggs,

whipping cream etc. flavored with bickman flavors and it was a very special

treat- just some thoughts- it was a long time ago.....

> Sue Rice

>

>

>

> > thanks. We have tried, but they can't use just water for numerous reasons.

The syrups have sugars and sorbitol still has carbs. If we use the syrup with

sorbitol the few carbs that he can eat with nutritional value would have to be

cut to even smaller amounts. Julissa

> >

> > Sent from my iPad

> >

> >

> >

> > >

> > >

> > > You can find a compound pharmacist. You can asked them to omit any

inactive ingredient.

> > > To: polymicrogyria My

> >

> > > From: auburn715@...

> > > Date: Fri, 20 Jul 2012 15:58:29 -0400

> > > Subject: Ketogenic diet and meds

> > >

> > >

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> > > I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(pur�e) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but he

cannot take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

> > >

> > >

> > >

> > > Thanks for your help, Julissa

> > >

> > >

> > >

> > > Sent from my iPad

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[Guest guest]

Do you have a gtube, or a button? If you have the tube, maybe look into a

button. We replace the tubing on our button once a week.

Is there any way you could switch from the continuous feeds? My daughter has

four feeds a day, 1hour each. She does oral feeding daily as well. We dissolve

all if her meds in water and shoot them through the button.

Sent from my iPhone

> thanks. We have tried, but they can't use just water for numerous reasons. The

syrups have sugars and sorbitol still has carbs. If we use the syrup with

sorbitol the few carbs that he can eat with nutritional value would have to be

cut to even smaller amounts. Julissa

>

> Sent from my iPad

>

>

>

> >

> >

> > You can find a compound pharmacist. You can asked them to omit any inactive

ingredient.

> > To: polymicrogyria

> > From: auburn715@...

> > Date: Fri, 20 Jul 2012 15:58:29 -0400

> > Subject: Ketogenic diet and meds

> >

> >

> >

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> > I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(pur�e) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but he

cannot take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

> >

> >

> >

> > Thanks for your help, Julissa

> >

> >

> >

> > Sent from my iPad

> >

> >

> >

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[Guest guest]

I thought the reason they don't like dissolved pills is because it speeds up the

rate the meds are absorbed into the blood stream and can be dangerous. Our son

is 10 and mostly Keto, we've never considered his liquid anti-seizure meds in

the diet.

Definitely for us going Keto had made a huge difference in his health and

behavior. Not having grains in the house we've all become much healthier.

-

Sent from my iPhone

>

> I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(purée) meals a day. His GI doctors are concerned because his pills are crushed

and administered by gtube. The tube is not intended for this use, but he cannot

take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

>

> Thanks for your help, Julissa

>

> Sent from my iPad

>

>

[Guest guest]

Julissa,

I started to search through old stuff- couldn't find it--- thought maybe I had

name wrong but then there it was----www.bickfordflavors.com/

Many years ago in early 2000- the Cleveland Clinic gave us their name- local

company- but we were allowed to use the flavors- and if i remember correctly I

did not figure them into recipes ( free Food)

I also just saw the recipe for cheesecake- The clinic would make up certain

recipes with his ratio- it was great- The ingredients were cream,/ cream cheese,

/sour cream,/ egg,/ butter & a bickford flavor and then at different times he

was allowed pureed strawberries on top- I would cook them in oven in metallic

cupcake holders in a water bath- I would watch for cooking time.

He loved them- Bon Appetite- Sue

> What are bickman flavors. Julissa

>

> Sent from my iPad

>

>

>

> > My son was on the ketogenic diet years ago- However at the time my son did

not have a g-tube But now he does and we put all meds in hot water for long

enough to cool and all meds really break down- I was taught this trick at the

hospital but never looked into the stability of meds- I then flush with more

water until the syringe is completely clear. Now obviously Depakote sprinkles or

other meds with capsule would not be done like this- I am going to ask our

pharmacist her thoughts- I've been doing for years( hope it is ok) --- My son

still eats by mouth but i want to make sure he gets all his meds- nothing drops

out or gets tucked away. We also use to make these little cheese cakes with the

eggs, whipping cream etc. flavored with bickman flavors and it was a very

special treat- just some thoughts- it was a long time ago.....

> > Sue Rice

> >

> >

> >

> > > thanks. We have tried, but they can't use just water for numerous reasons.

The syrups have sugars and sorbitol still has carbs. If we use the syrup with

sorbitol the few carbs that he can eat with nutritional value would have to be

cut to even smaller amounts. Julissa

> > >

> > > Sent from my iPad

> > >

> > >

> > >

> > > >

> > > >

> > > > You can find a compound pharmacist. You can asked them to omit any

inactive ingredient.

> > > > To: polymicrogyria My

> > >

> > > > From: auburn715@...

> > > > Date: Fri, 20 Jul 2012 15:58:29 -0400

> > > > Subject: Ketogenic diet and meds

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

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> > > >

> > > >

> > > >

> > > > I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(pur�e) meals a day. His GI doctors are concerned because his pills are

crushed and administered by gtube. The tube is not intended for this use, but he

cannot take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

> > > >

> > > >

> > > >

> > > > Thanks for your help, Julissa

> > > >

> > > >

> > > >

> > > > Sent from my iPad

> > > >

> > > >

> > > >

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> > > >

[Guest guest]

Julissa,

When we were on the Keto diet we were told to use a compounding pharmacy.

These 2 are familiar with the keto diet and may be willing to work with

your local pharmacy to help you with Keto diet issues.

H-B Drugs

N. Arlington, NJ

1-

Fax

Professional Arts Pharmacy

Baltimore, MD

1-

Fax

Also, to find a compounding pharmacy near you you can call 1-.

www.pccarx.com

Esther

> **

>

>

> Julissa,

> I started to search through old stuff- couldn't find it--- thought maybe I

> had name wrong but then there it was----www.bickfordflavors.com/

> Many years ago in early 2000- the Cleveland Clinic gave us their name-

> local company- but we were allowed to use the flavors- and if i remember

> correctly I did not figure them into recipes ( free Food)

> I also just saw the recipe for cheesecake- The clinic would make up

> certain recipes with his ratio- it was great- The ingredients were cream,/

> cream cheese, /sour cream,/ egg,/ butter & a bickford flavor and then at

> different times he was allowed pureed strawberries on top- I would cook

> them in oven in metallic cupcake holders in a water bath- I would watch for

> cooking time.

> He loved them- Bon Appetite- Sue

>

>

>

> > What are bickman flavors. Julissa

> >

> > Sent from my iPad

> >

> >

> >

> > > My son was on the ketogenic diet years ago- However at the time my son

> did not have a g-tube But now he does and we put all meds in hot water for

> long enough to cool and all meds really break down- I was taught this trick

> at the hospital but never looked into the stability of meds- I then flush

> with more water until the syringe is completely clear. Now obviously

> Depakote sprinkles or other meds with capsule would not be done like this-

> I am going to ask our pharmacist her thoughts- I've been doing for years(

> hope it is ok) --- My son still eats by mouth but i want to make sure he

> gets all his meds- nothing drops out or gets tucked away. We also use to

> make these little cheese cakes with the eggs, whipping cream etc. flavored

> with bickman flavors and it was a very special treat- just some thoughts-

> it was a long time ago.....

> > > Sue Rice

> > >

> > >

> > >

> > > > thanks. We have tried, but they can't use just water for numerous

> reasons. The syrups have sugars and sorbitol still has carbs. If we use the

> syrup with sorbitol the few carbs that he can eat with nutritional value

> would have to be cut to even smaller amounts. Julissa

> > > >

> > > > Sent from my iPad

> > > >

> > > > On Jul 20, 2012, at 6:54 PM, DeSimone

> wrote:

> > > >

> > > > >

> > > > >

> > > > > You can find a compound pharmacist. You can asked them to omit any

> inactive ingredient.

> > > > > To: polymicrogyria My

> > > >

> > > > > From: auburn715@...

> > > > > Date: Fri, 20 Jul 2012 15:58:29 -0400

> > > > > Subject: Ketogenic diet and meds

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > I hope the group has some words of wisdom to help us out. My son

> is on a Ketogenic diet. Most of his nutrition is administered by gtube. He

> does eat 1.5 (pur�e) meals a day. His GI doctors are concerned because his

> pills are crushed and administered by gtube. The tube is not intended for

> this use, but he cannot take syrups due to the sugars in them and the sugar

> free syrups contain sorbitol, which does have carbs. He eats very few carbs

> and we don't want to waste them on sorbitol. Water does not make for a long

> shelf life and sterile environment for the meds. Hasanyone had this problem

> and found a solution. We re scared to put some in his food, because getting

> him to finally eat was a struggle. I don't want him to stop eating.

> > > > >

> > > > >

> > > > >

> > > > > Thanks for your help, Julissa

> > > > >

> > > > >

> > > > >

> > > > > Sent from my iPad

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

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> > > > >

[Guest guest]

Thank you. I will pass this along to the nutritionist and GI nurse. J

[Guest guest]

Hello all,

As others have stated we too put all the meds thru the G-tube (and it’s a LONG

list of med’s) 5 times a day and have been doing so for the past 22 years.

is 23 years old and has been on the Ketogenic diet for the past 12 or so

years! We do crush all of the meds in about 20 cc’s of water, let them

dissolve and then flush with 80 cc’s of water. We change his button (which is

the original placement since 1990) monthly and I have never noticed it clogged

up and we change the connector tubing every other day. If he needs a new med

for PRN reasons I just remind the doc it has to be in pill form as to avoid the

sugars due to the diet and his hospital file indicates he is allergic to sugar

just to remind all that he is on the diet to avoid someone writing the wrong

orders. It really has been a simple process and is monitored closely by the

Keto team and we certainly feel the diet is a “miracle†as opposed to all

the seizure meds and quality of life that had while on all those meds. He

has been seizure free for years J

Hope you find a solution that works for him.

Cindi

From: polymicrogyria [mailto:polymicrogyria ] On

Behalf Of Julissa

Sent: Friday, July 20, 2012 2:58 PM

To: polymicrogyria

Subject: Ketogenic diet and meds

I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(purée) meals a day. His GI doctors are concerned because his pills are crushed

and administered by gtube. The tube is not intended for this use, but he cannot

take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

Thanks for your help, Julissa

Sent from my iPad

_____

No virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2197 / Virus Database: 2437/5147 - Release Date: 07/22/12

No virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2197 / Virus Database: 2437/5147 - Release Date: 07/22/12

[Guest guest]

We give Ian's meds via Gtube as well although we are very lucky he eats

everything by mouth. Can a pharmacy not compund meds without using a base that

has sugar? I never even though about the ingredients of the compund but maybe

they all have some sugar.

>

> Hello all,

>

>

>

> As others have stated we too put all the meds thru the G-tube (and it’s a

LONG list of med’s) 5 times a day and have been doing so for the past 22

years. is 23 years old and has been on the Ketogenic diet for the past 12

or so years! We do crush all of the meds in about 20 cc’s of water, let them

dissolve and then flush with 80 cc’s of water. We change his button (which is

the original placement since 1990) monthly and I have never noticed it clogged

up and we change the connector tubing every other day. If he needs a new med

for PRN reasons I just remind the doc it has to be in pill form as to avoid the

sugars due to the diet and his hospital file indicates he is allergic to sugar

just to remind all that he is on the diet to avoid someone writing the wrong

orders. It really has been a simple process and is monitored closely by the

Keto team and we certainly feel the diet is a “miracle†as opposed to all

the seizure meds and quality of life that had while on all those meds. He

has been seizure free for years J

>

>

>

> Hope you find a solution that works for him.

>

>

>

> Cindi

>

>

>

> From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of Julissa

> Sent: Friday, July 20, 2012 2:58 PM

> To: polymicrogyria

> Subject: Ketogenic diet and meds

>

>

>

>

>

>

> I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(purée) meals a day. His GI doctors are concerned because his pills are crushed

and administered by gtube. The tube is not intended for this use, but he cannot

take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

>

> Thanks for your help, Julissa

>

> Sent from my iPad

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.2197 / Virus Database: 2437/5147 - Release Date: 07/22/12

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.2197 / Virus Database: 2437/5147 - Release Date: 07/22/12

>

>

>

>

[Guest guest]

My son eats solids by mouth, but is still on 13 hours of Ketocal via tube.  I

have forwarded some of the parents responses to let the nutritionist and doctors

see how other parents and doctors have dealt with it.  I appriciate all of your

help and suggestions.  The syrups without sugar has Sorbitol.  Julissa

________________________________

To: polymicrogyria

Sent: Wednesday, July 25, 2012 12:25 PM

Subject: Re: Ketogenic diet and meds

 

We give Ian's meds via Gtube as well although we are very lucky he eats

everything by mouth. Can a pharmacy not compund meds without using a base that

has sugar? I never even though about the ingredients of the compund but maybe

they all have some sugar.

>

> Hello all,

>

>

>

> As others have stated we too put all the meds thru the G-tube (and it’s a

LONG list of med’s) 5 times a day and have been doing so for the past 22

years. is 23 years old and has been on the Ketogenic diet for the past 12

or so years! We do crush all of the meds in about 20 cc’s of water, let them

dissolve and then flush with 80 cc’s of water. We change his button (which is

the original placement since 1990) monthly and I have never noticed it clogged

up and we change the connector tubing every other day. If he needs a new med

for PRN reasons I just remind the doc it has to be in pill form as to avoid the

sugars due to the diet and his hospital file indicates he is allergic to sugar

just to remind all that he is on the diet to avoid someone writing the wrong

orders. It really has been a simple process and is monitored closely by the

Keto team and we certainly feel the diet is a “miracle†as opposed to all

the seizure meds and

quality of life that had while on all those meds. He has been seizure

free for years J

>

>

>

> Hope you find a solution that works for him.

>

>

>

> Cindi

>

>

>

> From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of Julissa

> Sent: Friday, July 20, 2012 2:58 PM

> To: polymicrogyria

> Subject: Ketogenic diet and meds

>

>

>

>

>

>

> I hope the group has some words of wisdom to help us out. My son is on a

Ketogenic diet. Most of his nutrition is administered by gtube. He does eat 1.5

(purée) meals a day. His GI doctors are concerned because his pills are crushed

and administered by gtube. The tube is not intended for this use, but he cannot

take syrups due to the sugars in them and the sugar free syrups contain

sorbitol, which does have carbs. He eats very few carbs and we don't want to

waste them on sorbitol. Water does not make for a long shelf life and sterile

environment for the meds. Hasanyone had this problem and found a solution. We re

scared to put some in his food, because getting him to finally eat was a

struggle. I don't want him to stop eating.

>

> Thanks for your help, Julissa

>

> Sent from my iPad

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.2197 / Virus Database: 2437/5147 - Release Date: 07/22/12

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.2197 / Virus Database: 2437/5147 - Release Date: 07/22/12

>

>

>

>