Question about med. supply and EN

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Clash

Clash

Joined
Apr 26, 2012
Messages
6,338
So I just got off the phone with the med supply company. They said insurance wasn't a problem but they don't carry the formula, peptide 1.5, and to order it would cost them more than they would be reimbursed. So, do I just try to find a company that has it or is this common and I need to get GI to find a different brand?
 
What brand do they carry? Jack's GI wasn't concerned as far as brand just what he would drink and as long as it was the "peptide formula" so Peptide or Pepatem were presented in both the 1.0 and 1.5. but as he is doing NG (correct?) I guess that wouldn't matter.
Pepatem doesn't have Carrageen so if that is what they carry I would just go with that.
Glad the insurance is not going to be an issue that must be a relief.
 
I guess Um going to have to look at a company in a larger town because apparently none of the ones we have mentioned here do they carry. The manager said what they don't normally stock they get through the hospital but small town/small hospital I guess.

I have a call into the nutritionist, so maybe they can recommend a company. If they do and it is near them and not us can the company ship supplies or will I have to make the.drive?
 
Most Dme ship from all over .
Most will order your brand if you are going to order it regularly.
The only difference between 1.0 and 1.5 is the number of boxes you have to tube in.
Some GI tracts can handle 1.5 some can not.
Tube feeding tends to take a lot longer than oral just because if the way the track works and each kid is different .
Most ped GI hospitals work with a specific Dme - they don't have to be local to ship since they are shipping from a warehouse anyway.
I would call the GI dept and ask who they use.
Peptamen / peptide are really std formulas but I know its harder to get the 1.5 calorie ones .
DS just drinks 1.0 normal since it's easier on the gut and no carragean kwim.
Aspria is one big one near Maryland or Virginia I have heard others use I think ??
 
I'm a bit confused as to why they can't order one brand but can another??? But, in any case, if you're just wondering about acceptable brands, S used Tolerex by Nestle... but it's not a premade shake, has to be mixed with water (only good for 48 hours so formula must be made, at least, every other day). Not even sure if this info helps! :lol:
 
I'm not sure EN is going to be covered. I've been on the phone with the local med supply, the nutritionist and our ins. The first med supply person didn't explain it properly this is what the store manager said:
It isn't our cost or because we don't normally have it. It is the covered cost, as example say it costs 4.00 a can the ins is only paying 1.25 a can so it is cost prohibitive for us to order since the coverage doesn't even cover our cost.

The customer serv agent with our policy said there are no med reviews or out right denials but he read off instances of when EN was covered-Ibd was not included esophinilic disorders were. For CD or UC it covers TPN.

The GI nurse is supposed to call me back and the agent said to ask for the codes and they can be entered, he said he ventures it is a case of needing pre cert. Once I can give codes then he could give estimates for allowances, coverage blah blah blah.

So at this point I just don't know.
 
Uggh! :(

I don't know your insurance systems so, I'm sure you've already considered this but I remember MLP has said something along the line that the formula can be covered because it is considered a 'supply' for the pump, etc.??
 
Ours was a matter of getting the right insurance person on the phone and the right "codes". It did take phone calls from me, DME and GI's office. Apria was really helpful in this and the phone calls they made to the insurance company.
 
The GI nurse just gave me numbers for soft touch, apria and one more and told me to call them for cost but honestly I can't see how this helps if I don't know how much my ins pays. I'm so confused.
 
Ok just called the companies she gave me and they, of course, can't tell me anything unless I have the order, code and some demographic thing. I called the GI nurse back and she said they were in a satellite office today but she would fax the info to all three companies tomorrow and we would go from there.

I asked should we keep the ng training appt since there may be an issue with ins and everything is so delayed. I hate for C to have to go through this then not be able to do. She said yes to keep the appt and they would need to look at him anyway.

I am so aggravated. He was up maybe 3 hours so far today. No stomach pain but major fatigue, joint pain and says he just doesnt feel good.

I can't really tell what is going on with him, since he usually has cramping, mouth ulcers, night fevers and joint pain with flare. Besides all the sleeping and a complaint of joint pain, nothing is really popping, kwim. There is weight loss but he isn't saying I can't eat or I'm not hungry, he eats when he is hungry and has been drinking shakes. It is more like he just isn't awake long enough to get all the calories in. I'm truly at a loss.
 
I really hope the insurance can get resolved tomorrow!! I can imagine how frustrated you are! :ghug:

Are there any local or state medical agencies that help with these costs? Our insurance wouldn't cover the formula but our hospital (dietitien) directed us to regional medical agency that covered the cost.
 
Really hope things turn around soon Clash!
What is the next step, meeting a surgeon or going to back his GI?
Sending hugs!
 
They couldn't tell us if it was covered until a claim went through.
It really depends on the formula codes and dx codes.
DS got his covered pre dx due to documented FTT a and multiple food allergies/sensitivities I think .
They sent one case over night that way we would only be billed for one case and could see if it went through and if DS would tolerate that formula brand .

Then after three days the rest came through.
I can say Oley foundation can sometimes help
There is discount through nestle nutrition when you order direct with auto renewal
Each formula manufacturer has financial aid programs.
Most states have a medical assistance clause for kids under 18 who have things like Ibd.
This qualifies the kid for a second insurance regardless of parent income .
The medical assistance plans go back three months on cost and tend to cover ng tube formula .
Good luck
 
Are you tracking calorie intake as well as any exercise?
the gi had us do that at one point.
DS was taking in 2600 a day and not gaining.
so it is important to know.
 
We do keep up with calories and his intake is down. He has gotten no exercise in the last 3bweeks and even before then there wasn't really any physical activity. Awhile back he would play some football with friends but that has been months.

So, I just got back from the ER, I was having this chest pain that was unbelievable! Not like heart attack pain. It started this morning when I would breathe in deep and got progressively worse. Turns out it is costochondritis. Toradol helped but iv dilauded caused the most severe cramps. That makes two pain meds I can't take...morphine and dilauded. I have a px for an anti inflammatory and have to see my GP.

What a day!

Thanks for all the tips wrote them all down and will be discussing them with GI

We will see GI on Thursday and GI nurse said we will go from there.
 
my little penguin said:
Most states have a medical assistance clause for kids under 18 who have things like Ibd.
This qualifies the kid for a second insurance regardless of parent income .
The medical assistance plans go back three months on cost and tend to cover ng tube formula .
Good luck
Click to expand...

We have this through the state of Michigan as my dd secondary insurance. It's been worth its weight in gold.

Also as mlp said the Oley foundation is a great place to find help for this.

Nothing more to add of help but just wanted to lend support.

Hugs
 
There is nothing that I can find in my state as far as secondary state ins that isn't financial based which we would not qualify for. When this has been mentioned before I actually called a friend who works with DHR and she knew of no program like that for our state. I guess I could try the children and family services but nothing on their page alludes to such a program.
 
Both my daughters have costochondritis, it's part of the type of arthritis they have. It's the absolute worst!
Hope you and C feel better soon.
 
Maya142, it was horrible. This morning I thought it was a pulled muscle by this afternoon I thought I had broken a rib or something, it hurt to move or breathe, the toradol has it under control right now. I so feel for your babies!
 
Clash said:
There is nothing that I can find in my state as far as secondary state ins that isn't financial based which we would not qualify for. When this has been mentioned before I actually called a friend who works with DHR and she knew of no program like that for our state. I guess I could try the children and family services but nothing on their page alludes to such a program.
Click to expand...

Sorry to hear that. We would bee in the same boat if it was based on income.
I guess it's the last thing Michigan is doing right.:cool2:

Sorry to hear you had to go to the ER.I'm glad your home.
 
Clash, they were given lidocaine patches which work for about 5 minutes and Tramadol. Nobody likes the give teenage girls strong painkillers. Nothing has helped except the right combination of meds, but thankfully they're both better now.
Any chance you have something autoimmune going on? This type of arthritis is associated with IBD.
 
Maya142, I also have postural orthostatic tachycardia syndrome. A study just came out this month by the top docs in that field. It was a small study but every patient tested positive for an antibody that gives goes toward the theory that POTs could be auto immune, the POTs community is tremendously excited by this find and larger studies are starting soon.

With all that said, I had a possible virus that left me with a cough that lasted a couple of weeks and the ER docs felt this was the cause.

My GI says I'm the zebra that everyone is overlooking hoof beats of horses with. He has tested me nine ways to Sunday for Crohns to no avail. Since POTs is a form of dysautonomia I feel my GI issues are related to the dysfunction of my autonomic nervous system which is a fairly common issue.

I go see my GP to follow up but I hope I can keep the pain under control with the px.

Btw, C's caloric intake today was 2800 calories. He is feeling awful, still no bowel symptoms but wishes his appt was tomorrow and that if the EN doesnt work out that they will admit him. He is so pitiful and breaking my heart to see him feeling so bad.
 
TEFRA/Katie Beckett

Established in 1982 under the Tax Equity and Fiscal Responsibility Act (P.L. 97-248), the Katie Beckett Medicaid Program (KB), permits the state to ignore family income for certain disabled children. It provides benefits to certain children 18 years of age or less who qualify as disabled individuals under §1614 of the Social Security Act and who live at home, rather than in an institution. These children must meet specific criteria to be covered. Qualification is not based on medical diagnosis; it is based on the institutional level of care the child requires. Title 42 Code of Federal Regulations outlines the criteria used to determine eligibility.

Katie Beckett Fact Sheet - Updated 01/17/14
Click to expand...


From
http://dch.georgia.gov/tefrakatie-beckett


That may work
Everything is always "hidden"
 

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