Posted By Posting
Sep 24, 2010
Update...Inevitable, I guess...On to the Neocate
Kylie did awesome on the Alimentum RTF for about a week and then the old fussy feeding symptoms started to return (repetitive arm twitching, crying after a feeding...). Last night with her bedtime bottle she arched her back, pulled away from the bottle over and over, cried, and pushed away from me. I decided it's time to make the switch to Neocate.

Although she has milk protein and corn allergies, I'd hoped she'd be able to tolerate the hydrolized milk and tapioca solids in the Alimentum, but in the end it looks like she's just too sensitive.

I've been terrified she wouldn't drink the Neocate (then what?) - but she took a full bottle of it at 10:30 and 5 a.m. last night. She did not fuss. She did pull away a couple times, clearly because of the taste. (I tried it, it is way worse than the OTC hypoallergenics...the Neocate flavoring packets - to me - help quite a bit, but she is not fond of anything in her milk and seems to prefer it plain no matter how bad it is.)

I sent the Neocate with her to daycare today and am praying she will continue to drink it.

Now, on to the financial side of this. The allergist gave us a big crate of samples but when those run out we'll have to start paying for it. I did some research and it turns out Texas passed a new state law (effective Jan 2010) requiring insurance companies to reimburse for elemental formula when it's medically necessary. Check it out:

This is WONDERFUL news but still does not mean that getting reimbursed will be easy. The first person I spoke with at my insurance company yesterday told me formula wasn't covered. (She looked at my policy but checked for the benefit through the pharmacy and found it was not a covered "medicine".) I took the advice from the Neocate website and called back asking for a case manager. They never connected me with a case manager but I guess the request got their attention. The second girl actually listened to me and checked my policy another way, finding that I'm eligible for reimbursement of elemental formula when it's medically necessary to manage "PKU or any inherited disease of organic or amino acid."

Multiple food protein allergy should be covered, but the doctor's office has to submit a "predetermination" of Kylie's condition and the insurance company will review it to decide whether it qualifies. If they deny the claim, we will have to appeal and appeal. I expect they will put up many roadblocks to discourage us from pursuing the claim. But if Kylie needs the Neocate, we have no choice.

Sep 27, 2010
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
please note that you may want to check with your early intervention in texas...California's EI paid for our Elecare with a note from his GI. Insurance wouldn't touch it
Sep 28, 2010
Thanks for the tip. Early Intervention can't help and insurance denied our first claim. Currently refiling through my husband's group insurance person with a copy of the Texas legislation attached. Steeling ourselves for a long battle and preparing to start paying for the Neocate. :/
Sep 29, 2010
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
My son still drinks the unflavored Neocate - he is used to & loves it - YUK! Anyway, not sure how old your daughter is, but insurance will usually pay through 12 mths. of age with a letter from GI & if you qualify (and have the same medical documentation WIC will pay through age 5). Good luck. Hope it works as well for your daughter that it did/does for our son. El
Nov 08, 2010
mary's mommy
I know how hard it can be fighting with the insurance companies, and trying to get any of them to listen to you, especially when all you want is for your child to have the formula they need and have a normal life. I went through this battle for awhile. I have unopened cases of Neocate Junior Formula for cheap if it will help you get through the time between now and when the insurance will start helping you. I hope this helps and if you need any tips for talking with insurance companies and doctors please don't hesitate to ask.
Check with your
doctor first!