ET Medical Supply Companies

[bethhall3434]

Who do you go through if your child is on ET for all the med supplies. We are currently not happy with our company, so I'm just wondering what else is out there and whether or not you like them. [emoji4]TIA

 

[Maya142]

My daughter has a G tube and a J tube.

We go through Coram now. It's been fine, though it took a while for them to set up everything in the beginning. It took so long that we actually went and bought a pump online on Ebay just so we'd have a backup (and we did need it!).

They provide us with formula (Neocate Splash), extensions, syringes, bags and a Moog Infinity Pump. We had to get a separate prescription for the backpack (we use the Mini backpack) but once we did, they provided that too.

We used to use the homecare company associated with our hospital, but unfortunately insurance does not cover them anymore. They were GREAT. But Coram is good too - we haven't really had any issues once everything got set up.

 

[bethhall3434]

Maya142-I love how you always respond, thank you!

My daughter Emma has a G tube, my daughter Abby has an NG tube, but will have a G tube placed in Sept.

We get everything through our company- Option Care. We use Kangaroo Joey pump and bags. We use Boost Kids Essentials 1.5 for formula.

Our insurance covers everything but the formula. We started buying the formula through MD Direct (it was cheaper) and option care said they would stop sending us the other products if we didn't buy formula through them. Kinda bogus if you ask me!

We've had late deliveries, where I have needed to clean and reuse bags multiple times. They have left something completely off our order and sent unnecessary things like gauze that we no longer need. It's just frustrating. We talked to the girls GI specialist and nutritionist about switching companies, then we immediately had a call from their Option Care rep promising to fix all the wrongs. We've given them another couple months, it has been better but not perfect. Also- they charge us daily. So for both girls on ET it's over $70 a day. Kind of crazy. Is that what your company does?

 

[Maya142]

We definitely do not get charged daily!!! Yikes!

To be honest, my husband deals with the insurance stuff though, so I don't know how they charge us monthly or if insurance covers everything. I think they do, but I'd have to check.

If you do switch companies, it's worth asking for the Moog Infinity Pump. It is much lighter and easier to carry around. The Kangaroo Joey is a great pump too - just heavier (though it primes much faster).

I don't know if they're only doing overnight feeds - if they are, it probably matters less. But if they aren't the Infinity is great and very light. Fits well into the mini backpack.

At one point my daughter was doing feeds 18-20 hours a day, so she had to take the backpack everywhere and we definitely appreciated the light pump.

Our insurance company used to give us only 15 bags per month - we were supposed to reuse them. Our GI was able to appeal get us one for everyday, saying that my daughter is immunosuppressed and we need a new bag daily. It worked - now we get 1 per day.

I would switch companies honestly. It doesn't sound like the one you're working with is doing a good job. We are also sent things like split gauze that we don't use but they do send us the essential things every time (extensions, formula, bags, syringes).

They do not send us enough syringes, so I buy some off Amazon. We get a box of 100 and they last a long time. We do a lot of liquid meds, so we really do need them.

Hope the G tube surgery goes well. My daughter MUCH preferred a having a tube in her belly (she had a GJ tube first, now a G and a J) vs. an NG or NJ tube.

 

[bethhall3434]

Yes, both of my daughters do night time feeds. I'm wondering if there is a generic brand for the boost kids essentials? Do you know of any generic brands?

 

[pdx]

Yikes--$70 a day adds up fast! As far as I know, most insurance companies will cover formula costs for a child as long as NG or G tube feeding is needed. Some insurance companies won't cover ET if the child is drinking the formula (which seems crazy to me, since the child is saving the insurance company all the associated costs of bags, pumps, etc.) but I've never heard of one that didn't cover it for tube-feeding. Maybe it's because Boost Essentials isn't an elemental or semi-elemental formula?

It might be worth doing some investigations through your doctor's office to find out if there is a way to get the formula covered by your insurance, either by changing formulas, or changing the way the orders are written for the formula. (Sometimes it depends on if the orders are written as a prescription, or if the billing is done through a different category.) Does your doctor's office know that you are paying 100% for the formula? If the doctor's office can't help, I would try the dieticians at your local hospital, or whichever department is accustomed to setting up kids with tube feeding. They may have some advice for you.

When my daughter did ET via NG-tube, everything was covered 100%--all the supplies and all the formula. At first we had a local medical supply company, which we loved. The dietician there knew more about all the different formulas than the people at our doctors office, and he helped us find a formula that worked for my daughter when the first ones were making her really nauseated. After 3 months, we switched over to Coram, and they were fine too.

I hope that you are able to switch to a better company, and that you can figure out how to get the formula covered by insurance.

 

[Maya142]

We have never been able to use polymeric formulas - like Boost or Ensure. My daughter just doesn't tolerate them. We used Peptamen Jr (semi-elemental) which was covered once she was getting it through a tube (when she was drinking it, we paid for it out of pocket).

Then eventually we switched to Neocate Splash (elemental) which has also been covered.

I would consult your GI and dietician/nutritionist. They may have some ideas on getting it covered. It maybe that you need to change formulas. Peptamen Jr has a 1.5 version...so does Kate Farms I think. Those are both semi-elemental formulas.

I was also wondering what pdx said - maybe it has to be a semi-elemental or elemental formula to be considered "medically essential" or "medical food"? I am just guessing though.

I'm going to tag my little penguin because she may be able to help.

 

[my little penguin]

We use a local company
They cover formula 100% as well even without a tube
The Dme gets it covered under infusion supplies
Not as prescription formula
Your insurance company can give you a list of approved Dme you can use

Surprised they are on kids boost
Most who have tubes use elemental or semi - elemental minimum
Ds drinks elemental orally (neocate jr)

Good luck

 

[bethhall3434]

Ok- another question. What's the difference between polymeric and elemental or semi-elemental?

I talked to our insurance today and they said they do not cover the boost because it is an over the counter formula.

Thanks!

 

[my little penguin]

Semi elemental and elemental formula
Is not over the counter
You need a doctors prescription for it
Semi elemental
Peptide or peptamen jr

Polymeric means the chains are similar to whole foods
Semi elemental means the chains are cut up or broken into smaller sections so easier to digest/absorb

Elemental (elecare jr or neocate jr) are amino acid based
Whole proteins are broken down in semi elemental (cut up) then the body breaks them down further to amino acids for the body to use

Elemental formulas are already broken down to amino acids so no intact proteins
Only need a few inches of healthy intestine to absorb the nutrients
Elemental formulas taste horrid so most need a tube to consume them
Ds thankfully drinks his

Elemental is easiest on the gut
Since taste isn't an issue I would see if the could get you neocate splash unflavored (already mixed ) elemental formula
Or neocate jr unflavored (powder you need to
Mix with water )

Good luck

 

[bethhall3434]

This all makes total sense! Thanks so much. I'm so glad I found this group!

 

[Maya142]

Yes - I would go semi-elemental or even elemental since taste isn't an issue because of the tubes. We started with Peptamen Jr (semi-elemental) and then went to Neocate Splash because my daughter had diarrhea with Peptamen Jr.

Do expect that it will some trial and error with a new formula.

Peptamen Jr has a 1.5 version. That might work well for them. There is also Pediasure Peptide which is semi-elemental but I don't know if there is a 1.5 version. Kate Farms is a much newer semi-elemental formula which also has a 1.5 version (I think - we've never used it).

Neocate Splash is a 1.0 formula so they'd have to get more - longer feeds. It's nice because you don't have to mix it (it's not a powder - it's little premixed cartons, like Peptamen Jr). Neocate jr is another option but that's a powder you'd have to mix.

Honestly, if they tolerate a polymeric formula, they'd probably do ok with any of these. Depends on what your insurance covers.

 

[Ladybug12]

I just wanted to share that I was told that the pediasure drinks were not covered because it wac otc. I finally reached an agent to told me I had to get a prior authorization form sent in from the GI to my prescription plan. It was approved and the drinks are covered 100%. It is ordered at the pharmacy.

 

[Farmwife]

Grace does boost kids essential 1.0. This is not over the counter (that I know of).
Its covered by her DME. Grace has a gtube.

 

[Maya142]

I think Boost kids essential is OTC Farmwife. Both the 1.0 and 1.5 version are OTC like the adult Boost or Ensure.

 

[Farmwife]

I haven't seem it here. But I don't doubt. Still it's covered for us.

 

[bethhall3434]

I talked to our dietician and an insurance rep and we are switching to pediasure peptide 1.5, which is a semi-elemental. This will be covered by our insurance. And I found out today that we finally met our family deductible! YAY! If it wasn't for this forum I would have not known to ask about other formulas. This forum is awesome. Thanks ladies!

And yes, Boost is OTC, unfortunately. I used to buy it from a different med supple company because it was cheaper, and I did all of it online without a prescription.

 

[my little penguin]

Woohoo!!!
So glad you are getting formula covered
That's wonderful !!!

 

[Maya142]

That's great!! So glad it is covered!!

We have Boost kids essentials in Rite Aid here...I don't remember if it was 1.0 or 1.5 but my daughter tried it (and adult Boost and Ensure).

You can actually also buy Peptamen or Pediasure Peptide online without a prescription, if I remember correctly.

That is what I did when my daughter was drinking them (insurance would not cover if she was drinking and not using a tube).

So I'm not quite sure why insurance makes the distinction, if both are available without a prescription. I suppose a semi-elemental is considered "medically necessary"?? No idea!! Maybe I'm remembering incorrectly, it was a few years ago.

But VERY glad it is covered for you now!!

 

[my little penguin]

Each formula has a different billing code
Some states lump all formula under the same code
Other states use different billing codes for different types of formula
The CODE determines which types of formulas are covered

 

[Farmwife]

:dusty: So happy for you guys! :dusty:

Don't even get me started on the insanity of insurance companies. :ack:
Ours will cover formula long term if she has a gtube but only temporary with an ng tube.

 

[pdx]

Great news!

Since your girls are already doing fine on a polymeric formula, I doubt that they will have any trouble digesting Pediasure Peptide, since it's more broken down (in fact, they'll probably do even better on this new formula, since they may absorb more nutrients from it). But if they do have any problems, such as nausea or cramping, just know that there are many different formulations of each brand, and some kids need to try a few different formulas to find the best one for them. My daughter couldn't do any of the kid's Peptamen formulas, which all had a particular fiber supplement that made her nauseated, but she did really well with the adult version of Peptamen.

 

[bethhall3434]

Does your med supply company send you a monthly supply each month, or do you have to talk to them each month about what you need and make an order?

 

[my little penguin]

We have to order it each month by phone or internet
But it has to be ordered by us

 

[Maya142]

We order every month too. But they send us the same stuff every month. We have to do it by phone.

 

[kimmidwife]

We also use Coram for my daughter. She uses peptamin 1.0 she couldn't tolerate the 1.5.
I am so glad your insurance will start covering it. Our insurance covers it partially. We still end up paying about $170 a month.