Keto diet via G-tube.... help

[Guest guest]

My son recieved his mic-key button and started the keto diet in July

of this year. He is now 22 mths old. Our insurance has denied his

RCF formula and I'm blue in the face fighting with them over it. We

also got Medicaid as a secondary ins. in July. They have been

paying for the RCF. We just found out that we are no longer

eligible for Medicaid after 12/31. We can't afford the RCF as we

are already struggling.

My question: Are there other kids who are strictly tube fed that

use anything other than the RCF while on the keto diet? Can baby

food and cream or anything else be combined for feedings? Is this

hard?

Thanks for any suggestions - I really need them.

[Guest guest]

-

I am also a shelly, and I don't have any suggestions about other foods

that can be substituted but I do have one UN opened box of RCF that I

have hesitated to discard due to the high cost, I would b happy to send

it to you if you have interest. If you would like it please e-mail you

address to directly.

shelly@...

Keto diet via G-tube.... help

My son recieved his mic-key button and started the keto diet in July

of this year. He is now 22 mths old. Our insurance has denied his

RCF formula and I'm blue in the face fighting with them over it. We

also got Medicaid as a secondary ins. in July. They have been

paying for the RCF. We just found out that we are no longer

eligible for Medicaid after 12/31. We can't afford the RCF as we

are already struggling.

My question: Are there other kids who are strictly tube fed that

use anything other than the RCF while on the keto diet? Can baby

food and cream or anything else be combined for feedings? Is this

hard?

Thanks for any suggestions - I really need them.

" 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]

Our insurance rejected paying for RCF at first also, then we had the

doc write a letter stating that this was used in conjuntion with the

diet. After a struggle they finally did reimburse us, and continue

to pay for the RCF.

Best of luck to you,

ette, Mom to

>

> My son recieved his mic-key button and started the keto diet in

July

> of this year. He is now 22 mths old. Our insurance has denied

his

> RCF formula and I'm blue in the face fighting with them over it.

We

> also got Medicaid as a secondary ins. in July. They have been

> paying for the RCF. We just found out that we are no longer

> eligible for Medicaid after 12/31. We can't afford the RCF as we

> are already struggling.

>

> My question: Are there other kids who are strictly tube fed that

> use anything other than the RCF while on the keto diet? Can baby

> food and cream or anything else be combined for feedings? Is this

> hard?

>

> Thanks for any suggestions - I really need them.

>

>

[Guest guest]

My son started the k-diet in July 2004. Since then, we've gone

several rounds with the insurance company over KetoCal (another K-diet

formula that costs even more than RCF). We are using it b/c Danny

didn't tolerate RCF at all (was vomiting nearly all of every feeding).

We have tried everything we know to try, and still our insurance

company insists that they don't provide ANY formula at all ever - even

if it is the sole source of nutrition. They believe that if the

family can't purchase food for their child, that they must be eligible

for state benefits, and that the state will provide the food.

However, in OK, we will not have a Beckett program (medicaid for

SN kids without consideration of family income) until at least July

2005. And the waiting list for an in-home support waiver is about 5

years long (we've been on it for 3.5 years, so a little relief should

be on it's way too - though Beckett might come first). (if any

of you have different information about Beckett, etc. in

Oklahoma, I'd love to hear it. This is what I have found.)

So, that leaves us needing to pay for Ketocal. Total cost for a

complete KetoCal diet for my five year old is right around $700/month.

While my husband makes slightly more than $50,000/year, we pay out

about $15,000/year in co-pays, deductibles, other out-of-pocket

expenses, and things that Danny physically, medically or

developmentally needs that are not covered by insurance. We called

the company that makes KetoCal and discussed the problem with them.

They have no programs to help with the cost of their products, though

they did send us two cases of free formula " to show that they care "

(total value = about $250).

We wound up looking at the budget, deciding where we could skimp even

further, cut out all entertainment except basic cable TV (no video

purchasing or rental, no family outings that costs money, no eating

out, no purchasing of anything that isn't absolutely necessary

including no new educational/developmental toys for either child, try

to get all clothes purchased by grandparent, drive as little as

possible to save on gas, lose weight so that we are eating less...).

With all that, we can provide funding for about half of his diet to be

KetoCal. So, Danny gets 120g a day of KetoCal overnight via feeding

pump.

During the day, we feed blended food with bolus tubing and syringes.

He gets a mixture of baby food meats, fruits, and vegetables, butter,

corn oil, and water. It works well for him. The plus to this method

is that it allows for ratio changes. KetoCal is always a 4:1 ratio.

The blended feedings are 3:1. 4:1 is a little much for him, since he

already has chronic lacticacidosis. So, the 3:1 during the day brings

his ketone levels down enough to keep him out of metabolic acidosis

and the hospital.

Practically speaking, for the use of blended food though a g-tube, it

does work - you can get it in the tube. However, it would be

difficult to do so unless you use the bolus tubing and a 60-ml

catheter-tip syringe. Danny's food flows through this system with

minimal pushing. We give small boluses (4 oz or less depending on

time of day and recent vomiting), many times a day, and it works.

I've got to go. Danny's calling. I hope that is somewhat useful.

Christa

mom to Drew (typical age 2) and Danny (5 with COX-2 defiency)

>

> >

> > My son recieved his mic-key button and started the keto diet in

> July

> > of this year. He is now 22 mths old. Our insurance has denied

> his

> > RCF formula and I'm blue in the face fighting with them over it.

> We

> > also got Medicaid as a secondary ins. in July. They have been

> > paying for the RCF. We just found out that we are no longer

> > eligible for Medicaid after 12/31. We can't afford the RCF as we

> > are already struggling.

> >

> > My question: Are there other kids who are strictly tube fed that

> > use anything other than the RCF while on the keto diet? Can baby

> > food and cream or anything else be combined for feedings? Is this

> > hard?

> >

> > Thanks for any suggestions - I really need them.

> >

> >

[Guest guest]

Just a thought.... what about having the dietitian come up with a mealplan of

" real food " that you could blend, dilute with water & give through the g-tube.

You could make it in bulk and freeze it. I'd bet it would be cheaper. Just a

thought.

Kathy - 's mom

-- " christa_bartlett " christa_bartlett@...> wrote:

My son started the k-diet in July 2004. Since then, we've gone

several rounds with the insurance company over KetoCal (another K-diet

formula that costs even more than RCF). We are using it b/c Danny

didn't tolerate RCF at all (was vomiting nearly all of every feeding).

We have tried everything we know to try, and still our insurance

company insists that they don't provide ANY formula at all ever - even

if it is the sole source of nutrition. They believe that if the

family can't purchase food for their child, that they must be eligible

for state benefits, and that the state will provide the food.

However, in OK, we will not have a Beckett program (medicaid for

SN kids without consideration of family income) until at least July

2005. And the waiting list for an in-home support waiver is about 5

years long (we've been on it for 3.5 years, so a little relief should

be on it's way too - though Beckett might come first). (if any

of you have different information about Beckett, etc. in

Oklahoma, I'd love to hear it. This is what I have found.)

So, that leaves us needing to pay for Ketocal. Total cost for a

complete KetoCal diet for my five year old is right around $700/month.

While my husband makes slightly more than $50,000/year, we pay out

about $15,000/year in co-pays, deductibles, other out-of-pocket

expenses, and things that Danny physically, medically or

developmentally needs that are not covered by insurance. We called

the company that makes KetoCal and discussed the problem with them.

They have no programs to help with the cost of their products, though

they did send us two cases of free formula " to show that they care "

(total value = about $250).

We wound up looking at the budget, deciding where we could skimp even

further, cut out all entertainment except basic cable TV (no video

purchasing or rental, no family outings that costs money, no eating

out, no purchasing of anything that isn't absolutely necessary

including no new educational/developmental toys for either child, try

to get all clothes purchased by grandparent, drive as little as

possible to save on gas, lose weight so that we are eating less...).

With all that, we can provide funding for about half of his diet to be

KetoCal. So, Danny gets 120g a day of KetoCal overnight via feeding

pump.

During the day, we feed blended food with bolus tubing and syringes.

He gets a mixture of baby food meats, fruits, and vegetables, butter,

corn oil, and water. It works well for him. The plus to this method

is that it allows for ratio changes. KetoCal is always a 4:1 ratio.

The blended feedings are 3:1. 4:1 is a little much for him, since he

already has chronic lacticacidosis. So, the 3:1 during the day brings

his ketone levels down enough to keep him out of metabolic acidosis

and the hospital.

Practically speaking, for the use of blended food though a g-tube, it

does work - you can get it in the tube. However, it would be

difficult to do so unless you use the bolus tubing and a 60-ml

catheter-tip syringe. Danny's food flows through this system with

minimal pushing. We give small boluses (4 oz or less depending on

time of day and recent vomiting), many times a day, and it works.

I've got to go. Danny's calling. I hope that is somewhat useful.

Christa

mom to Drew (typical age 2) and Danny (5 with COX-2 defiency)

>

> >

> > My son recieved his mic-key button and started the keto diet in

> July

> > of this year. He is now 22 mths old. Our insurance has denied

> his

> > RCF formula and I'm blue in the face fighting with them over it.

> We

> > also got Medicaid as a secondary ins. in July. They have been

> > paying for the RCF. We just found out that we are no longer

> > eligible for Medicaid after 12/31. We can't afford the RCF as we

> > are already struggling.

> >

> > My question: Are there other kids who are strictly tube fed that

> > use anything other than the RCF while on the keto diet? Can baby

> > food and cream or anything else be combined for feedings? Is this

> > hard?

> >

> > Thanks for any suggestions - I really need them.

> >

> >

" 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