Our girl has finally passed milk at age 3.5 and we have a bunch of unopened Neocate Infant (she never tolerated Junior) cans left.  We would like to be connected with a family that is struggling to pay for formula, and supply them for free with over 30 cans, or split them up between a few families. We do not want to pay to send them to a reseller who will sell them on eBay or Amazon for a profit, so we are avoiding the Facebook groups (plus, we don't even HAVE Facebook accounts).  We will want to chat with the family at length first to be sure that you are, in fact, a Neocate family and not a reseller! Please send me a private message and we can connect over email and phone. Thank you and God bless you on your journey!

Original Post

Hello and God bless you for trying to help another family or families!y son was just diagnosed about a month ago. We thought he was tolerating Nutramigen, but he started vomiting frequently, having more eczema flares and is dropping on the growth chart. I am in the process of finding an amino acid formula, which is painfully expensive, especially when he’s only consuming formula (had to back off all foods as rice and chicken seem to make him vomit too (not for 4 hours straight thankfully  but not tolerating). I was working with our insurance and got word today that there is basically no getting anywhere with them. I’d greatly appreciate any help! I understand other families may be in need as well, but I’d love to connect with you if any is still available. Thank you! 

Steph Lemle

Hi. We live in FLorida and our 11 month old daughter has FPIES. She currently gets all her nutrition from Neocate. We get 7 cans every month from the WIC office, which lasts about 2 -3 weeks and they just told us we only get until her first birthday. As of now our insurance will not cover it.  It is so nice that you are looking to give your Neocate away. Where do you live? 

We were also denied insurance coverage of Neocate due to age (over 1) in Wisconsin.  Neocate has professionals that can help you advocate with your insurance company if there is a chance of coverage.  If you are still denied, they have their own assistance program you can apply to even if your child is over one.  We also get a lot of free samples from very nice doctors and dieticians.  I believe there are also other options as well depending on what your state offers and your income level.  It's hard enough to have an FPIES kid and then on top of it to try to pay for their safe food . . . quite the struggle.

Hello Everyone,

After about 6 months of struggle trying to get Marcus's Elecare and Thomas's Neocate covered, we were finally able to get it covered.  We have Tuft's and honestly they were amazingly helpful.  They assigned us an advocate and Julia and I ave been extremely impressed with this insurance company.  We had Blue Cross Coast to Coast for years and they pale in comparison.

One of the issues that we had was that FPIES is so new that the doctors, medical supply companies, and insurance companies were not using proper codes.  Julia read recently that FPIES was just assigned a new ICD-10-CM Diagnosis Code.  This just came out in 2019 so many docs may not even know about it.  However the correct billable code to be used and increase your chances of getting things paid for is:  K52.21

This can be seen on ICD10Data.com but in the past, insurance, doctors and medical supply companies were putting in all sorts of codes and then leaving notes saying it was FPIES and the coverage would then be denied.  K00-K95, K50-K52, K52 all sparked denials.  In fact our medical supply company will still from time to time put in the wrong code and we will get a denial letter.  Then our advocate from Tufts will call them again and fix the issue.

Before you give up hope, check with the parties to see if your formula would be covered using the proper K52.21 ICD-10 code.

Good luck to all, our family can certainly relate to all your struggles.

Mark & Julia

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