Re: Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

[Guest guest]

No Ensure is probally not any easier to digest than the Pediasure. I cannot remember why Dr.Cohen suggested it too us. I think it may have more calories in it, again not positive though. Also since we have to pay out of pocket for it, we have noticed Ensure is on sale much more often than the Pediasure. Grace tolerates both well so for us it really does not matter. Sorry if I confused anyone.

Find the music you love on MSN Music. Start downloading now!

[Guest guest]

No Ensure is probally not any easier to digest than the Pediasure. I cannot remember why Dr.Cohen suggested it too us. I think it may have more calories in it, again not positive though. Also since we have to pay out of pocket for it, we have noticed Ensure is on sale much more often than the Pediasure. Grace tolerates both well so for us it really does not matter. Sorry if I confused anyone.

Find the music you love on MSN Music. Start downloading now!

[Guest guest]

Is there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Our insurance co.denied the claim & we are struggling paying for it because it is so expensive. Or is there any other funding type sources out there that anyone knows about. Any pertinant info. is greatly appreciated. Thanks in advance.

Debbie Vanaman (Mommy of Jaleigh...complex one)

Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

Do you think the Ensure is easier to digest than Pedia Sure? Pedia Sure seems to be too much for Sheldon when he's sick/tired (when he needs the calories the most).

Grace has never had any negative side effects from Carnitor (thankfully because she is very deficient.) She does have some problems with no appetite, at times. Although she does have a g tube we do not provide nutrition through it unless she is ill, or having regression. Currently we are giving her Periactin to stimulate her appetite (we also use it for migranes and helping her sleep.) For her it really seems to help, but she does take quite a bit for a two year old. It is common for kiddo's this age range to not eat regularly, unfortunatly with Mito they just don't have the option of doing this.

Oh yeah we also give her adult Ensure when she does not eat well. They work well because she thinks they are just chocolate milk.

Best wishes

Rock, jazz, country, soul & more. Find the music you love on MSN Music!Please contact mito-owner with any problems or questions.

[Guest guest]

Is there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Our insurance co.denied the claim & we are struggling paying for it because it is so expensive. Or is there any other funding type sources out there that anyone knows about. Any pertinant info. is greatly appreciated. Thanks in advance.

Debbie Vanaman (Mommy of Jaleigh...complex one)

Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

Do you think the Ensure is easier to digest than Pedia Sure? Pedia Sure seems to be too much for Sheldon when he's sick/tired (when he needs the calories the most).

Grace has never had any negative side effects from Carnitor (thankfully because she is very deficient.) She does have some problems with no appetite, at times. Although she does have a g tube we do not provide nutrition through it unless she is ill, or having regression. Currently we are giving her Periactin to stimulate her appetite (we also use it for migranes and helping her sleep.) For her it really seems to help, but she does take quite a bit for a two year old. It is common for kiddo's this age range to not eat regularly, unfortunatly with Mito they just don't have the option of doing this.

Oh yeah we also give her adult Ensure when she does not eat well. They work well because she thinks they are just chocolate milk.

Best wishes

Rock, jazz, country, soul & more. Find the music you love on MSN Music!Please contact mito-owner with any problems or questions.

[Guest guest]

Sheldon takes Pedia Sure by mouth but we currently pay for it.

I've been told that it'll be covered by Medicaid once we get the

Medicaid waiver but I'm not sure about that.

Is there anyone out there

that has a mito child that drinks Pediasure, by mouth, not tube fed &

gets it covered by their insurance somehow? Our insurance

co.denied the claim & we are struggling paying for it because it

is so expensive. Or is there any other funding type sources out

there that anyone knows about. Any pertinant info. is greatly

appreciated. Thanks in advance.

Debbie Vanaman

(Mommy of Jaleigh...complex one)

Ensure/Pedia sure was RE: a couple

of ?'s about carnitine supp

Do you think the Ensure is easier to digest than Pedia

Sure? Pedia Sure seems to be too much for Sheldon when he's sick/tired

(when he needs the calories the most).

Grace has never had any negative side

effects from Carnitor (thankfully because she is very deficient.)

She does have some problems with no appetite, at times. Although

she does have a g tube we do not provide nutrition through it unless

she is ill, or having regression. Currently we are giving her

Periactin to stimulate her appetite (we also use it for migranes and

helping her sleep.) For her it really seems to help, but she

does take quite a bit for a two year old. It is common for

kiddo's this age range to not eat regularly, unfortunatly with Mito

they just don't have the option of doing this.

Oh yeah we also give her adult Ensure when she does not

eat well. They work well because she thinks they are just

chocolate milk.

Best wishes

Rock,

jazz, country, soul & more. Find the music you love on MSN

Music!

Please contact mito-owner with any problems or

questions.

Yahoo! Groups

Sponsor

ADVERTISEMENT

[Guest guest]

Sheldon takes Pedia Sure by mouth but we currently pay for it.

I've been told that it'll be covered by Medicaid once we get the

Medicaid waiver but I'm not sure about that.

Is there anyone out there

that has a mito child that drinks Pediasure, by mouth, not tube fed &

gets it covered by their insurance somehow? Our insurance

co.denied the claim & we are struggling paying for it because it

is so expensive. Or is there any other funding type sources out

there that anyone knows about. Any pertinant info. is greatly

appreciated. Thanks in advance.

Debbie Vanaman

(Mommy of Jaleigh...complex one)

Ensure/Pedia sure was RE: a couple

of ?'s about carnitine supp

Do you think the Ensure is easier to digest than Pedia

Sure? Pedia Sure seems to be too much for Sheldon when he's sick/tired

(when he needs the calories the most).

Grace has never had any negative side

effects from Carnitor (thankfully because she is very deficient.)

She does have some problems with no appetite, at times. Although

she does have a g tube we do not provide nutrition through it unless

she is ill, or having regression. Currently we are giving her

Periactin to stimulate her appetite (we also use it for migranes and

helping her sleep.) For her it really seems to help, but she

does take quite a bit for a two year old. It is common for

kiddo's this age range to not eat regularly, unfortunatly with Mito

they just don't have the option of doing this.

Oh yeah we also give her adult Ensure when she does not

eat well. They work well because she thinks they are just

chocolate milk.

Best wishes

Rock,

jazz, country, soul & more. Find the music you love on MSN

Music!

Please contact mito-owner with any problems or

questions.

Yahoo! Groups

Sponsor

ADVERTISEMENT

[Guest guest]

> Ensure/Pedia sure was RE: a couple of ?'s aboutIs there anyone out

there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets

it covered by their insurance somehow?

Insurance won't pay for it without a script. No insurance will, including

medicaid. If you have a script, the rare insurance company will. Medicaid will

also pay with a script. WIC will also pay with a script (for children under

five).

Carnation instant breakfast is less expensive and contains just about the

same nutrients. I would use this instead of pediasure for a low weight child.

You can also add cream to boost calories.

[Guest guest]

Well....we had a script & Arnett HMO will still not pay for her formula to be covered. Also, she has Children's with Special Heathcare Insurance and they were covering it and stopped recently...said they did not realize that she was not tube fed & /or under the age of 5...and that if she can still drink it that she needed to be on WIC. Well, that is the other problem...we cannot get WIC...we make too much money to qualify....same goes for Medicaid....she does not get that either. I may just have to check out the Carnation Instant Breakfast...she just turned three in September and weighs not much over 30lbs.

I just wish there was more help out there for the middle-class people who cannot afford all of the "extras" that we encounter with mito. I am at a loss of what to do & was just wanting suggestions. Thanks for letting me vent....

Debbie Vanaman

Re: Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

> Ensure/Pedia sure was RE: a couple of ?'s aboutIs there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Insurance won't pay for it without a script. No insurance will, including medicaid. If you have a script, the rare insurance company will. Medicaid will also pay with a script. WIC will also pay with a script (for children under five).Carnation instant breakfast is less expensive and contains just about the same nutrients. I would use this instead of pediasure for a low weight child. You can also add cream to boost calories.Please contact mito-owner with any problems or questions.

[Guest guest]

Well....we had a script & Arnett HMO will still not pay for her formula to be covered. Also, she has Children's with Special Heathcare Insurance and they were covering it and stopped recently...said they did not realize that she was not tube fed & /or under the age of 5...and that if she can still drink it that she needed to be on WIC. Well, that is the other problem...we cannot get WIC...we make too much money to qualify....same goes for Medicaid....she does not get that either. I may just have to check out the Carnation Instant Breakfast...she just turned three in September and weighs not much over 30lbs.

I just wish there was more help out there for the middle-class people who cannot afford all of the "extras" that we encounter with mito. I am at a loss of what to do & was just wanting suggestions. Thanks for letting me vent....

Debbie Vanaman

Re: Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

> Ensure/Pedia sure was RE: a couple of ?'s aboutIs there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Insurance won't pay for it without a script. No insurance will, including medicaid. If you have a script, the rare insurance company will. Medicaid will also pay with a script. WIC will also pay with a script (for children under five).Carnation instant breakfast is less expensive and contains just about the same nutrients. I would use this instead of pediasure for a low weight child. You can also add cream to boost calories.Please contact mito-owner with any problems or questions.

[Guest guest]

Debbie,

You might want to try the feeding group on yahoo. They may have good

ideas about getting insurance coverage. I have also heard of several people

who have purchased formula online. I actually sold some extra formula to

someone on special child. Unfortunately, that site has been down for months

due to all the spamming it was getting. There may be some trade/reduced

cost sites out there. It was a site for special needs equipment exchange.

I would not feel too bad about using CIB. It is much better tasting than

pediasure so kids may drink more of it. Most insurance companies will not pay

for formula if your child does not have a tube. Where is your child on the

height/weight charts? My kiddo has had a tube since age 15 months. She will

be seven in March and weighs about 42 pounds. She looks pretty good now.

Some states have medicaid waiver programs. Have you looked into them?

[Guest guest]

Debbie,

You might want to try the feeding group on yahoo. They may have good

ideas about getting insurance coverage. I have also heard of several people

who have purchased formula online. I actually sold some extra formula to

someone on special child. Unfortunately, that site has been down for months

due to all the spamming it was getting. There may be some trade/reduced

cost sites out there. It was a site for special needs equipment exchange.

I would not feel too bad about using CIB. It is much better tasting than

pediasure so kids may drink more of it. Most insurance companies will not pay

for formula if your child does not have a tube. Where is your child on the

height/weight charts? My kiddo has had a tube since age 15 months. She will

be seven in March and weighs about 42 pounds. She looks pretty good now.

Some states have medicaid waiver programs. Have you looked into them?

[Guest guest]

Debbie,

Hi my Name is Ange and my Daughter is 5 and has Mito complex 1 and Fatty acid oxidation disorder among others. Can I ask what state you are in We are in MA, What I did for ashley was have my Pediatrician write that this is a necessary for her to survive basically to the insurance company and to the State insurance then they have to approve because it is just like medication. If your Pedi won't do it then have your GI doctor write one. You should not have to pay and explain the sitituation. to them. Hope this helps

Ange

--------- Re: Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

> Ensure/Pedia sure was RE: a couple of ?'s aboutIs there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Insurance won't pay for it without a script. No insurance will, including medicaid. If you have a script, the rare insurance company will. Medicaid will also pay with a script. WIC will also pay with a script (for children under five).Carnation instant breakfast is less expensive and contains just about the same nutrients. I would use this instead of pediasure for a low weight child. You can also add cream to boost calories.Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Debbie,

Hi my Name is Ange and my Daughter is 5 and has Mito complex 1 and Fatty acid oxidation disorder among others. Can I ask what state you are in We are in MA, What I did for ashley was have my Pediatrician write that this is a necessary for her to survive basically to the insurance company and to the State insurance then they have to approve because it is just like medication. If your Pedi won't do it then have your GI doctor write one. You should not have to pay and explain the sitituation. to them. Hope this helps

Ange

--------- Re: Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

> Ensure/Pedia sure was RE: a couple of ?'s aboutIs there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Insurance won't pay for it without a script. No insurance will, including medicaid. If you have a script, the rare insurance company will. Medicaid will also pay with a script. WIC will also pay with a script (for children under five).Carnation instant breakfast is less expensive and contains just about the same nutrients. I would use this instead of pediasure for a low weight child. You can also add cream to boost calories.Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

I think Pedisure has the vitamins a child needs vs. what is in ensure and

is for an adult. Because I had asked that question of our metabolic dietician

and she would recommend the pedisure for a child vs. ensure because of what

is in each can. I guess look at the labels and compare.

Nerenhausen

mom to Leah

wrote:

No Ensure is probally not any easier to digest than the Pediasure.

I cannot remember why Dr.Cohen suggested it too us. I think it may have

more calories in it, again not positive though. Also since we have to pay

out of pocket for it, we have noticed Ensure is on sale much more often than

the Pediasure. Grace tolerates both well so for us it really does not matter.

Sorry if I confused anyone.

Find

the music you love on MSN Music. Start downloading now!

Please contact mito-owner with any problems or questions.

This message scanned for

viruses by CoreComm

[Guest guest]

I think Pedisure has the vitamins a child needs vs. what is in ensure and

is for an adult. Because I had asked that question of our metabolic dietician

and she would recommend the pedisure for a child vs. ensure because of what

is in each can. I guess look at the labels and compare.

Nerenhausen

mom to Leah

wrote:

No Ensure is probally not any easier to digest than the Pediasure.

I cannot remember why Dr.Cohen suggested it too us. I think it may have

more calories in it, again not positive though. Also since we have to pay

out of pocket for it, we have noticed Ensure is on sale much more often than

the Pediasure. Grace tolerates both well so for us it really does not matter.

Sorry if I confused anyone.

Find

the music you love on MSN Music. Start downloading now!

Please contact mito-owner with any problems or questions.

This message scanned for

viruses by CoreComm

[Guest guest]

Sometimes you need to get some thing written up by a dietician and your doctor

to say why this is medically necessary for your child. May be some one else

out there will have the exact wording for you. But I remember hearing from

our speech therapist or such that if they need this for food that it should

be covered. Can't remember everything exactly. But keep on trying, it's

worth a shot.

Nerenhausen

mom to Leah

Debbie Vanaman wrote:

Ensure/Pedia sure was RE: a couple of ?'s about

Is there anyone out there that has a mito

child that drinks Pediasure, by mouth, not tube fed & gets it covered

by their insurance somehow? Our insurance co.denied the claim & we

are struggling paying for it because it is so expensive. Or is there any

other funding type sources out there that anyone knows about. Any pertinant

info. is greatly appreciated. Thanks in advance.

Debbie Vanaman (Mommy of Jaleigh...complex

one)

-----

Original Message -----

From:

Stacey

Fleming

To:

Mito

Sent:

Monday, November 29, 2004 8:58 PM

Subject:

Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

Do you think the Ensure is easier to digest than Pedia Sure? Pedia

Sure seems to be too much for Sheldon when he's sick/tired (when he needs

the calories the most).

Grace has never had any negative side

effects from Carnitor (thankfully because she is very deficient.) She

does have some problems with no appetite, at times. Although she does

have a g tube we do not provide nutrition through it unless she is ill,

or having regression. Currently we are giving her Periactin to stimulate

her appetite (we also use it for migranes and helping her sleep.) For

her it really seems to help, but she does take quite a bit for a two

year old. It is common for kiddo's this age range to not eat regularly,

unfortunatly with Mito they just don't have the option of doing this.

Oh yeah we also give her adult Ensure

when she does not eat well. They work well because she thinks they

are just chocolate milk.

Best wishes

Rock, jazz, country, soul

& more. Find the music you love on MSN Music!

Please contact mito-owner with any problems

or questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT

[Guest guest]

Sometimes you need to get some thing written up by a dietician and your doctor

to say why this is medically necessary for your child. May be some one else

out there will have the exact wording for you. But I remember hearing from

our speech therapist or such that if they need this for food that it should

be covered. Can't remember everything exactly. But keep on trying, it's

worth a shot.

Nerenhausen

mom to Leah

Debbie Vanaman wrote:

Ensure/Pedia sure was RE: a couple of ?'s about

Is there anyone out there that has a mito

child that drinks Pediasure, by mouth, not tube fed & gets it covered

by their insurance somehow? Our insurance co.denied the claim & we

are struggling paying for it because it is so expensive. Or is there any

other funding type sources out there that anyone knows about. Any pertinant

info. is greatly appreciated. Thanks in advance.

Debbie Vanaman (Mommy of Jaleigh...complex

one)

-----

Original Message -----

From:

Stacey

Fleming

To:

Mito

Sent:

Monday, November 29, 2004 8:58 PM

Subject:

Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

Do you think the Ensure is easier to digest than Pedia Sure? Pedia

Sure seems to be too much for Sheldon when he's sick/tired (when he needs

the calories the most).

Grace has never had any negative side

effects from Carnitor (thankfully because she is very deficient.) She

does have some problems with no appetite, at times. Although she does

have a g tube we do not provide nutrition through it unless she is ill,

or having regression. Currently we are giving her Periactin to stimulate

her appetite (we also use it for migranes and helping her sleep.) For

her it really seems to help, but she does take quite a bit for a two

year old. It is common for kiddo's this age range to not eat regularly,

unfortunatly with Mito they just don't have the option of doing this.

Oh yeah we also give her adult Ensure

when she does not eat well. They work well because she thinks they

are just chocolate milk.

Best wishes

Rock, jazz, country, soul

& more. Find the music you love on MSN Music!

Please contact mito-owner with any problems

or questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT

[Guest guest]

Dear group,

We live in Indiana.

Re: Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

> Ensure/Pedia sure was RE: a couple of ?'s aboutIs there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Insurance won't pay for it without a script. No insurance will, including medicaid. If you have a script, the rare insurance company will. Medicaid will also pay with a script. WIC will also pay with a script (for children under five).Carnation instant breakfast is less expensive and contains just about the same nutrients. I would use this instead of pediasure for a low weight child. You can also add cream to boost calories.Please contact mito-owner with any problems or questions./! TT> Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Dear group,

We live in Indiana.

Re: Ensure/Pedia sure was RE: a couple of ?'s about carnitine supp

> Ensure/Pedia sure was RE: a couple of ?'s aboutIs there anyone out there that has a mito child that drinks Pediasure, by mouth, not tube fed & gets it covered by their insurance somehow? Insurance won't pay for it without a script. No insurance will, including medicaid. If you have a script, the rare insurance company will. Medicaid will also pay with a script. WIC will also pay with a script (for children under five).Carnation instant breakfast is less expensive and contains just about the same nutrients. I would use this instead of pediasure for a low weight child. You can also add cream to boost calories.Please contact mito-owner with any problems or questions./! TT> Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

What I did for ashley was have my Pediatrician write that this is a necessary

for her to survive basically to the insurance company and to the State

insurance then they have to approve because it is just like medication.

Insurance does not have to pay for this in many cases. This could be

considered similar to an over the counter medication and most insurance will

not pay for this. Also, may insurance companies have policies against paying

for formula when a child also eats by mouth, especially if there is no g-tube in

place. The thought is that you have to pay for food on your own--even those

with limited diets (ex. celiac disease, allergies).

[Guest guest]

> I think Pedisure has the vitamins a child needs vs. what is in ensure

> and is for an adult. Because I had asked that question of our metabolic

> dietician and she would recommend the pedisure for a child vs. ensure

> because of what is in each can.

The main problem with ensure is the osmolarity. It can be dangerous for

children, especially small children.