Oral vs. NG Tube -Insurance-Parental Guilt

[Pilgrim]

Sure, it's all in there.

Enteral Nutrition is expensive. Lately I've been wondering (and having massive guilt attacks for doing so) if it wouldn't be a good idea to go with an NG tube for financial reasons. I think we could get her covered if it were a tube feed.

So far my amazing daughter will drink however many containers she requires, so it really isn't a compliance issue.

Just wondering if any other parents have grappled with this.

 

[DanceMom]

The cost of having a chronically ill child can be life changing. We aren't having to make decisions about NG tubes, but we are faced with other decisions regarding A's care and it's tough. Whatever decision you make, I know it will be out of love.

 

[crohnsinct]

Oh man! Don't feel guilty at all...we have all been faced with the same decision over various medical issues. I am not familiar with your medical system but paging Tesscorm because I know she had issues with coverage and such, although her son did do tube feeds. Maybe is familiar with some agency etc that can help you.

 

[Farmwife]

:yfaint: Like we don't face enough when it comes to guilt!

That's a hard call to make and I know where your coming from.

What does her GI have to say about it? They will be the ones to approve it.

Hugs

 

[Tesscorm]

Whatever decision you make will be in her best interest... none of these decisions are easy and none are ever made without our children's best interest in mind! No guilt allowed! :ghug:

But, re the formula...

Our insurance did not cover the formula, tube or otherwise. However, our hospital put us in touch with CCAC (a regional medical agency - might be in your area too??) who cover ed the cost over the initial period (we were not given a set time period). During this time, we tried to get insurance to cover but were denied. As we were denied, CCAC agreed to continue covering the cost (formula, equipment, supplies and monthly nurse visit) until S stopped using it as a treatment (partial or exclusive) (two+ years). As S always did tube feeding, I'm not sure if that would have been a requirement with CCAC, however, the formula did need to be through prescription from the GI.

S's formula was not drinkable. S was prescribed Tolerex by Nestle.

If I had to do it over again, I would still go with the tube. At one point, when S was doing partial (1500 cal/day), I did ask him if he'd prefer switching formulas to a drinkable shake and his answer was no. He said it was easier to simply insert the tube at night, ingest formula while sleeping and remove tube in morning - he didn't want the bother of having to drink a minimum number of shakes.

But, it's a bit different for your daughter... she's young, too young to learn to insert the tube on a daily basis, which means she needs to keep tube in. Not a big deal other than kids play and it might get pulled out... just something to consider.

Do you have a prescription for the formula? If not, can you get one? If you can get a prescription, get the tube equipment but let her continue drinking... who's to know?!? :lol:

The other option is Trillium health care - our hospital told us that the formula would be covered through Trillium (Ontario medical agency) if our private insurance didn't cover it. (In our case, because CCAC continued covering, I never needed to deal with Trillium.) However, I believe SupportiveMom once tried to get formula covered thru Trillium and wasn't able to??? IDK, Sick Kids' hospital nutritionist told me no one would be denied??

Hope some of this helps...

 

[SupportiveMom]

Pilgrim We were 100% covered for enteral nutrition for my kid. Here is the catch - it has to be exclusive, & it has to be an NG tube the hospital inserts, not one you take in & out. We went to the hospital, the GI set it up & my D was admitted for a few days & they inserted the tube. There was special forms the dietitian filled out that went straight to the Ontario Drug Plan & didn't do anything. Our pharmacy handled it all & the formula was sent straight to them for me to pick it up.

This was while we were at north york general. I'm sure Sickkids could do the same.

 

[Maya142]

No real advice since my daughter has mostly only used the NG tube but sending hugs!!

I will say that my daughter got used to the NG tube much faster than I expected her to. It's really not as scary as it sounds or looks.

 

[Pilgrim]

Tesscorm we work with Trillium to help with covering the cost of Humira (!) but looking through their paperwork echoes what supportivemom said above - it has to be exclusive and NG. I forgot about the exclusive part.

Wish we could get the oral EEN covered. It's ridiculous.

I don't think our GI would have a problem prescribing it - he gave us a prescription for the oral shakes just so we could try to get through insurance the first time around. We didn't get far with that.

I think we'll just live with the cost and revisit it if we have to.

Thanks for the support and understanding. Yeah, I think we have to do a lot of weighing for these kids overall.

 

[pdx]

Don't feel guilty at all--these decisions are never easy or clear cut. I honestly don't know what I would do in your situation.

If you decide to stick with drinking the formula, you might be able to find donated formula on the Oley Foundation website. When we had several cases of Peptamen that we couldn't use, I donated them using their website. They maintain a page that lists tube-feeding supplies and formula that people want to donate. Anyone who needs the supplies just has to pay postage. I don't know if it's just for the US, or if Canadians could use it too. Here's the link for the site:

http://www.oley.org/EquipExchage_completelist.html

I'll also add that--as Maya said--tube feeding was easier than we thought it would be.

 

[Mr chicken]

I know Ds formula is covered through the durable medical equipment clause of the insurance policy as infusion supplies even though he drinks it orally.
Formula itself is not covered unless there are only a few dx crohns is not one of them

As far as cost
There are more than a few websites that people donate formula too
Order direct from the manufacturer by the case -cheaper
Auto refill orders get percentage off
Manufacturers run sales typically on the normal versions ( boost pediasure etc)
Stock up then
Shipping tends to be free
Website coupons
And watch department stores sales
The grocery store was the most expensive
We have been lucky
The insurance has covered Ds either fully or at a percentage for the past four years ( even pre dx)

His was only 100% een for 9 weeks and then 3 weeks
Otherwise it's has been various percentages of his diet
He is on so elemental so not sure if that plays a role in it or not

 

[Pilgrim]

I did some research today and there doesn't appear to be an option in Canada for buying Ensure (example) straight from manufacturer. BUT I did sign up for a coupon club from the manufacturer and that could help a bit.

In Canada I've seen the price run from $8.99 to 14.99 per 6 pack for Ensure. We have 4 stores to choose from in a two hour radius that sell the product. We average about $10 per 6 pack. So 250-275 per month w/taxes in and she drinks 5 per day. I have no idea how that compares to what the prices are down south.

At the beginning I ordered by the case from the pharmacy but unfortunately they topped up the cost with a prescription filling fee.

I'm going to look into "infusion supplies".

 

[Mr chicken]

http://abbottnutrition.com/brands/products/pediasure-enteral-formula-1_0-cal

Have you tried the abbott online store?
She drinks pediasure correct ??? Not the adult version ensure ..
Pediasure tends to be more expensive than kids boost
Kids boost is $4.99 for a 4 pack on the nestle nutrition website
Not sure about Amazon
Ds formula averages over $1400 a month so not doable without insurance .

 

[Pilgrim]

Oh, that is alot! Is the cost because it is elemental?

We were told at dx that the adult formulation is equivalent to the pediatric formulation so to buy either. Generally the Pediasure is much more costly so we have always used the adult product. We buy store (generic) brand when necessary but she does notice a taste difference. Boost had changed their formula some months ago and she couldn't stand the taste change - they get really particular about taste predictability. At least H does. Maybe it's her age.

I was looking at the abbott site in Canada. Huge difference in canadian vs. US dollar so it isn't worth importing from USA.

 

[Mr chicken]

The protein is the difference in the adult shakes
Our Gi was very specific
The protein is too high for little kids and can cause kidney issues .
There is a reason there are two versions

Peptamen jr is semi elemental and does not contain carrageen

 

[Mr chicken]

Taste wise
Ds will drink the peptamen jr with prebio
But hates the regular peptamen jr
Go figure

 

[Pilgrim]

The protein is the difference in the adult shakes
Our Gi was very specific
The protein is too high for little kids and can cause kidney issues .
There is a reason there are two versions

Peptamen jr is semi elemental and does not contain carrageen

Protein content is comparable in both products Pediasure is 9.4 and Ensure is 9.5 so that wouldn't be an issue for her.