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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Insurance won't pay for Peptamen Jr.--any advice


11-07-2016, 03:54 PM   #1
ChicagoMom
 
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Insurance won't pay for Peptamen Jr.--any advice

Hi. My 13-year-old daughter is going to start supplemental NG-tube feedings next week. Made some calls today and found out that my insurance company will not cover the formula which has been prescribed, which is Peptamen Jr. I see I can buy it myself, but wondering if anyone has any advice on the least expensive way to go about this. Thanks.
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*R*~mom of *L*~age 14-diagnosed with CD 5/14

Currently taking:
Remicade 10mg/kg
Methotrexate 15mg/week
NG-tube at night

Past meds:
6-mp--discontinued 9/14 because it caused bone marrow suppression
Prednisone--5/14-11/14
11-07-2016, 04:08 PM   #2
Maya142
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I am going to tag my little penguin because she has a lot of experience with this. We also did supplemental EN but our insurance covered it because it was through a tube.

Has your daughter had an NG tube before? My daughter was very nervous about getting one but after the first night, she was fine. The first night was uncomfortable and her nose and throat were sore.

Will she be keeping it in or just inserting it for overnight feeds?
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-07-2016, 04:09 PM   #3
Clash
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My little penguin may can give you some insight. I do know it's usually paid for through the durable medical equipment clause but I think the intake has to be a certain percentage?
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-07-2016, 04:13 PM   #4
Maya142
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I think Clash is right - we were able to get it covered when my daughter got it through a tube (about 60%+ of her daily calories) but when she was trying to drink it (and she could only manage 1-2 a day), insurance would not cover it and we had to buy it.
11-07-2016, 07:03 PM   #5
my little penguin
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If I called the insurance they would tell us it's not covered for peptamen jr or the neocate jr he is currently on.
But when the gi sends a letter of medical necessity through the durable medical equipment company both were covered as infusion therapy supplies .
Each state has different laws on covering elemental formulas like neocate jr
But peptamen jr is semi elemental so shouldn't be as big of an issue

I would contact your Dme company
They have an insurance department which is used to dealing with this
And can help you figure out if it's truly covered .

That said you can buy it directly from nestle nutrition store which can give you a discount for repeat auto orders

I would also let the gi know if it's truly not covered after talking to the dme they might just need a letter or the gi may be ok with kids boost or pediasure instead (although not sure pediasure is any cheaper to be honest)
Kids boost you can get on sale at the grocery store
Or nestle nutrition store runs specials on it by the case for very little

Ds was approved for peptamen jr at Dx when he was losing weight 5 years ago
And no issues at all when switched to neocate jr

Good luck

Open foundation can help
As can MAGIC
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11-07-2016, 07:34 PM   #6
my little penguin
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11-07-2016, 07:35 PM   #7
Maya142
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Feeding Tube Awareness also has supply exchanges listed. It's also a great site for tips and tricks about feeding tubes.
11-07-2016, 08:58 PM   #8
ChicagoMom
 
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Thanks everyone! I let the doctor's office know what the insurance said and they said they'd try to work their magic and "make" the insurance pay, so we'll see. This is our first launch into the NG tube and we're all a little emotional about it. Thanks for the advice. I really appreciate it!
11-07-2016, 09:22 PM   #9
Maya142
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Couple more tips :
1) The first day really might be uncomfortable. My daughter was absolutely dreading put it in the second day, but it was surprisingly easy and her nose and throat were less sore. Within a week or so, she was really good at inserting it and her throat and nose did not hurt at all.

2) You want the smallest tube possible. We used a 6Fr tube - which is an infant size - but it worked well. They're thin and flexible like spaghetti.

3)Typically hospitals tell you to use Duoderm and Tegaderm. That's fine if she is keeping it in but if she's inserting it every night, it's very sticky and hard to remove and of course, that is not comfortable or fun! We used Hypafix and that worked well. We got it on Amazon but your DME supplier can probably get you some.

4)If she's inserting it every night, then one side might be easier than the other. My daughter could insert it with no issues at all on the left side, but using her right nostril was much harder and it took several tries. She mostly used the left side and sometimes switched to give it a break.

5) It might take some trial and error to find a formula she can tolerate. Also, finding the perfect rate is also trial and error. Hang in there. You will figure it out.

My kiddo was really dreading the tube but once she got used to it, she realized it was MUCH easier than drinking formula and she finally began to gain weight and feel better.

My daughter has officially had every kind of feeding tube - NG, NJ, G, GJ and J tubes - so if you have any questions, please ask!

Good luck!
11-08-2016, 07:46 AM   #10
ChicagoMom
 
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Thank you so much for all of the good advice. We are both pretty much dreading this whole thing, but your advice makes me feel like it won't be so bad. I'm sure I'll be back with lots of questions after we get going.
11-17-2016, 09:53 AM   #11
ChicagoMom
 
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Thanks everyone! After being told multiple times that the insurance company would not cover the formula, we were surprised with the news that they approved it after all. Yay! We are so relieved, and so far the tube feedings are going really well. Thanks for all of the advice. Sometimes I think patients and parents know better than the nurses!
11-17-2016, 10:07 AM   #12
my little penguin
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So glad it was approved and the tube feeding is going better
11-17-2016, 02:29 PM   #13
Maya142
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Glad it's going well!
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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Insurance won't pay for Peptamen Jr.--any advice
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