Way back on January 1st of this year I posted about my daughters colic: The Colic Chronicles – Episode 1. At the time, I truly thought it would be a nice series of posts describing our couple of months of dealing with colic: what worked, what didn’t and basically provide some support for others who might end up experiencing the same thing. Well, it turned out to be more than just “colic” and my planned series of posts turned to mush as I dealt with a baby that SCREAMED night and day and threw up constantly. We were living a NIGHTMARE, and my poor daughter was caught in the middle. We knew something was wrong, but what?
We were at the doctor’s office every week for over a month trying different things. I was breast-feeding so the thought was that it was reflux or some sort of digestive problem. She had x-rays, urine tests, blood tests, you name it. They even talked about doing some GI tests which involved putting tubes down her throat and making her utterly uncomfortable for a few days. I prayed it wouldn’t come to that. After trying all the reflux meds, one of which – Reglan – made her jittery, the doctor (whom we adored) suggested we try not nursing her for a day. I was floored by this! Not feed my baby? The doctor suggested that she might not be able to process the breast milk; that she might have a milk protein allergy. So, Abby got nothing but Pedialyte for a day. The biggest challenge with that was getting her to take a bottle as she’d never had one before.
While on the Pedialyte, once she was taking the bottle…sort of…we noticed something – she didn’t cry and scream like she was before. Here we are, NOT feeding our baby and she seems happier. I can’t even begin to explain how confusing that was and how bad I began to feel since I had been the one feeding her and therefore causing her pain and discomfort.
The doctor was pretty sure we had isolated the problem, but now what? In order to confirm her suspicion, she suggested we try giving Abby a hypoallergenic formula for a week while I pumped and see if her discomfort continued to subside. They gave us samples of Nutramigen by Enfamil and within 2 days we noticed that she had still not screamed at us and was spitting up less. We were then faced with a dilemma. Do I try an elimination diet and risk her having more problems, or do we look at this expensive alternative as a cure and continue with what we know works. We opted to stick with the formula. When your baby has been that uncomfortable and you finally fix it, YOU DON”T MESS WITH IT! As disappointed as we were that she only had the “benefits” of breast milk for 2 months, we knew we were doing the right thing.
So, as I dealt with engorgement (I can’t believe I said that out loud, let alone in public) and the issues my body had with weaning my daughter, we had a new baby! She was no longer screaming AT ALL and was happy and content all day. She napped very well and was sleeping great, in her crib, at night. We were finally ready to breathe a sigh of relief. At least until she got her 4 month vaccinations. Since then she will forever be known as “Crabigail” but that is a story for another time.
Since my daughter had been on the Nutramigen, we were shelling out $300-$400/mo just on formula, which is quite a shock when your plan is for the baby’s milk to be free. It was worth it for her comfort, but I had been doing some research on the web about babies and milk protein allergies and I discovered that some insurance companies are covering infant formula when prescribed by a physician. I also learned of a hypoallergenic formula that was available only by prescription, thus making it more likely the insurance will cover it. In addition, this formula was supposed to help with reflux as well, and Abby still spit up quite a bit and was still showing signs of reflux.
I contacted my insurance company, Tricare (my husband is a retired Navy Veteran) and asked them if they would cover Neocate infant formula in cases of severe milk protein allergy and reflux. After over an hour on the phone with Tricare, they indicated that it was a covered benefit (they would pay 80%) provided the doctor could present adequate medical proof of its necessity. A team of nurses would then review the information and determine if they would cover it.
We met with Abby’s doctor (a new doctor…long story) and told him what we found out and he told us that he would do whatever the insurance company asked to get them to cover the formula. In the meantime, he wrote a prescription for the Neocate so we could get her started on it and make sure she tolerated it well. Neocate runs anywhere from around $39 to $55 for A 14 OZ. CAN which is over twice the cost of regular formula. The cost varies depending upon where you get it. We were getting it from Walgreens for around $39 per can but we knew that if the insurance approved it, we would get reimbursed. We spent $600 the first month she was on it while waiting for the insurance to make a decision.
Our insurance Company went back and forth with Abby’s doctor requesting numerous additional information, but in the end, one month later, they approved the coverage and set us up with an account through Apria Healthcare. They UPS the formula to us and although their prices per can are on the high end, our 20% cost share is around $170 per month, much better than $600 or even the $400 we were spending for Nutramigen.
Abby is now six months old and while she still spits up frequently and is on Prevacid to help with her reflux, she has gained weight steadily (although she’s barely in the 50th percentile for weight while in the 95th percentile for height) and aside from the fussiness that appears to be in her nature (nothing like her mother, nope…not me), she seems quite happy.
If you have a young infant and are experiencing any kinds of colic or symptoms of discomfort with your baby, I really recommend that you ask your doctor about the different types of formula if you are formula feeding or about elimination diets if you are nursing. I have done extensive research on colic and its symptoms and there is a ton of new evidence that suggests that it is likely due to reflux or a food allergy. I’m no doctor but I am convinced that no baby (or the parents) needs to endure colic, especially if caused by a food allergy.
If you have any questions, please feel free to post a comment here or email me through our contact form at the top of the page. Additionally, a simple Google search for your baby’s symptoms, or any of the formulas I’ve mentioned will provide a fantastic list of useful resources. The internet is a wonderful tool for researching ideas and suggestions to help your baby, but please always check with your doctor before implementing any of them.
About Kim
I am so glad I did a search on this. Your site gave me hope about insurance covering formula. Our 4 month old daughter is not on Nutramigen (5th different formula) and it is working wonders. I had the doctor write a letter saying it was medically necessary to the insurance company and now the insurance company needs more information. What they need is the Diagnosis and Procedure Codes before they make a determination. I am so afraid that they won’t fill out the paperwork correctly. Can you give me any information as to how the doctor should fill out (codes used?). I have Aetna so don’t know if the codes are the same but if I could at least know what descriptions were used it would be tremendously helpful. I am keeping my fingers crossed. Thanks.
I am at my wits end my 5 month old has been on Aliemntum for the past 2 1/2 months, we have tried every formula under the sun. My husband was deployed until a month ago, so I tried breastfeeding but with two other kids it was just too overwhelming, hey I am human! Anyways the WIC program here is making me try to get tricare to cover it, then I tell my dr’s office they say they have never heard of wic trying to do that, now wic says if I don’t have at least the denial letter by next visit I can’t get any more formula, the dr’s office needs the cpt code, but after I have been doing some research they should know that, she has bloody stools, very very constipated and very fussy. She has a Milk allergy and something to cause the bloody stools when she’s not on it.I promise I have spent all day on the phone from tricare to express scripts to wic to the dr’s office to the supplier and I keep getting the run around, I am ready to cry. I don’t know what to tell the dr’s office.. any suggestions. I am really at a loss for words, we can not afford the formula and I feel like everyone is passing the buck…….. this is horrible and making me crazy! sorry if I don’t make sense, but after today I am soo done anyways thanks in advance
Breanna,
Read back a few comments…someone posted a code…read the whole section for comment #15 and all the replies. See if that helps you.
It IS covered is you can prove it is medically necessary. Tricare can be a pain and sometimes you just have to be persistent.
I would call back and tell them that you KNOW it is covered because 2 years ago a “friend” got theirs covered by Tricare. Give them the code, and make them do the research.
Throw around “durable medical equipment” and “medically necessary” and “enteral nutrition”
Email me if you need to and I can send you the codes that showed up on our paperwork.
kim@accidentalmommies.com
Good luck!
Thanks I am going crazy here I was in tears today because I was passed around and of course no one cares it’s not them having to pay that amount, when it really is medically needed… I will email you if the information I got from the other post doesn’t work, thank you so much for your wealth of information I feel like I may get somewhere with this tomorrow! a light at the end of the tunnel thanks again
I’ve ben through the struggle of unsuccessfully breastfeeding (only 5 weeks before we had to change). Then I went to Baby’s Only – which will work for those who don’t have soy or milk allergies. It doesn’t have the DHA/ARA that are questionable in other formulas and she’s done remarkably well on it. (The DHA/ARA in formulas are different than those in some actual baby foods.)
I think it’s great that so many are able to seek to have their expensive formulas covered. If Baby’s Only doesn’t have something an infant is allergic to and could work, I highly recommend it. They also have a soy and a lactose-free version. It’s done my dear little Faith wonderfully and she’s been growing like a weed since she’s been on it. One tip, though. Pre-mix it and refrigerate it to reduce the bubbliness. If you don’t you will have a fussy, gassy baby!
Thanks for the feedback Helen, hopefully that will help someone in a similar situation.
Take care!
OMG i got all the information what you need to do is get the number to a local Medical supply company, get the code for your specific formula, my dr’s office needed the address and tax id number as well, so since she has two different codes blood in stool and milk allegry she will most likely get approved. That was the biggest mission of my life, now what I did was looked up the medical suppliers that tricare gave me and saw if they provided nutrional items, one did so I called and was transferred to someone who knew just what I was talking about. If anyone has triwest and lives in SD county email me I can give you the information. I am so happy I could jump for joy that was a lot of work!! Thanks for all the help and pointing me in the right direction total life saver!!!!
Breanna,
That is wonderful news!
I live in Kansas and am dealing with Triwest. My 8 mth old has had problems since the beginning
He has a hard time digesting the milk proteins. I’m breastfeeding and have taken all dairy
out of my diet and have been supplementing with nutramigen since going back to work in
August. He’s been miserable and a dietician just suggested neocate. We got a prescription
for neocate and am going to pick up a can at walgreens today and since reading all of these
posts I guess I’ll be paying full price until I can get Triwest to approve it?? Do you still have the
information they need? or suggestions where to start?
Hello Breanna I’m also trying to get Tricare to help with Neocate. We are stationed at Camp Pendleton. Where you successful? I just got a denial letter today that I’m going to appeal. My son is 6 months old and wic in was supplying us with 10 cans a month. When we moved here and visited our local wic office they told it was a process. First have doc submit to tricare if tricare won’t pay try and get MediCal and bring in both denial letters and then they may help. The way they were talking gave me no hope. I’m so frustrated! My son has thrived on this since day one he was a different happy baby with no more bloody stools. Any comments or suggestions is highly welcomed and appreciated.
Wow that is awesome that they covered that for you guys! Glad it worked out and thanks for sharing
That’s really awesome!!! I will have to keep that in mind! Especially if DH stays in the Air Force…
I wanted to wish you the best of luck. We tried for months to get Tricare to cover anything and they just wouldn’t do it. We jumped through all the hoops (we had already been to several pediatricians and allergists) and went and saw a nutritionist and dermatologist. One of my twins is allergic to milk, soy, coconut, and corn. Even in the hypoallergenic formulas like Neocate (we did a test w/ this through the nutritionist)one or m ore of those ingredients is in all formulas. The only formula I found that he will tolerate w/out major allergic reactions is the Similac Alimentum ready to feed (the powder is 35% corn.) Even the RTF has a small amount of soy oil in it but not enough to warrant a major reaction in him. Thankfully the twins are 11 months so only one more month of this. My husband is an office and makes good money but the formula and diapers for the twins is around $800 a month. Thankfully we can “afford it” but it has definately strained us.
What I can suggest to you is you check in with WIC because your husband is an E-5 and depending on where you live you may qualify. The other thing to check into is through EFMP and their ECHO program. The ECHO program helps soldier’s families/dependants that have significant medical issues so you might be able to get some help w/ the formula through that program. This was suggested by our pediatrician but we didn’t qualify. You do need your baby enrolled in EFMP though. Good luck with everything.
Shannon,
Have you considered cloth diapering? I know, most people’s first reaction is “eeeew!” (Mine certainly was!) We’ve been using cloth for two years and absolutely love it. I’m not a die hard cloth mama, though. I use disposies when we go out of town and at night. I love the fact that I don’t have to worry about rushing out to buy disposies all the time. My third son is almost out of diapers (thankfully), but he’s allergic to disposies. He gets horrible eczema like rashes all over his “covered” areas and itches like crazy. If he uses them for extended periods, the rash will cover the rest of his body and even look like hives on his face. It’s awful! We decided to invest in Knicker Nappies because they are so much like disposies in the simplicity (diaper and cover in one), plus they’re a one sized fits all babies. At $18 each, it was still cheaper for us to buy them than it was to go with disposies. Best of all, since the poo gets flushed, the diaper pail smells soooo much better! Ick.
I have a WIC appointment next week, but the medical request has to be submitted to the state for approval and who knows how long that will take?! I never even stopped to consider EFMP. I really feel blonde now! LOL. I’ve been meaning to go to the EFMP office anyway. I’ve never heard of the ECHO program, though.
Kim, I just called Tricare- the actual Tricare South line. The woman I spoke to was sooo nice and helpful (gotta love that!) and she said what you said- it’s a Durable medical Equipment, not a prescription medication. She told me exactly what I needed to do, gave me a fax number in her office to send my info to, and gave me some tips on how to get it approved…like mentioning the bloody diarrhea when he eats anything else! She said we need to let them know just how serious this is, the problems we are having with Express Scripts, and provide them with a time line of everything-even phone calls made to ES and the dr and everything else! She said that the more information you include, the better, even if it is some seemingly insignificant detail. She further said that Neocate IS covered…we just have to get approval for it. It’s that JUST that has me concerned. But, it is another way to try to unravel this mess they call health insurance. Ick. ;-) Thanks for the information.
Amanda,
That is GREAT news. My daughter was not quite as bad as yours as far as the symptoms so I think it will not be a problem. I do know they talked to my Dr. quite a few times, had question after question and my Dr was patient and answered them and it worked out.
Good luck!
Actually I bought several hundred dollars worth of cloth before they were born but we were to pcs when they were just a few weeks old so I thought I’d hold out until we got settled here. It was incredibly overwhelming at first as I had no help and was breastfeeding, etc. I could barely get them fed and change disposable diapers, etc and keep sane lol. When we got here I got the cloth going and they wouldnt have it. I think they got used to not feeling that wet – I even bought hemp wick pads (I made them) but nothing worked…..they just screamed. I’ll hang on to them in hopes of us having one more baby and I can use them then.
The people at Apria Healthcare (I am guessing you are talking to them since Kim referred you) are wonderful. They tried so hard to help us. Tricare just didn’t care about us and figured Wyatt could be on oral steroids indefinately even though it could affect his development.
Shannon,
I wanted to pass along some more info for you. Tricare DOES consider the Alimentum to be a Durable Medical Equipemnt. The HCPCS code (Insurance code) is: B4153. If you can obtain a referral for this, using this code, and documenting medical necessity, they should approve it. Also, according to the Tricare site, DME’s are 100% covered for Prime enrollees and you’d have a 15-20%copay for Standard/Extra. https://www.hnfs.net/bene/benefits/durable_medical_equipment.htm
I hope this helps you. Kim, thans so much for pointing me in the right direction on this! How did you get Tricare to reimburse you? Once you submitted the referral for the DME, how long did it take for approval?
When we first submitted to Tricare for reimbursement, it kept bounced over to Express Scripts. We just had to call in to Tricare, explain that we now have approval for the Neocate and want to be reimbursed and it is considered “durable medical equipment”. They took care of it over the phone then.
So I think when you send it in reimbursement, just include your approval letter and the right code so they don’t bounce it over to Express Scripts.
Tricare always reimburses for your out of pocket if you get approval after the fact…at least in our experience.
As for the referral it took about a month I think…they kept asking the Dr for more information BUT if you call in to check on it, they are usually very helpful in telling you what is going on.
Actually I submitted those codes to the pediatrician and she wrote letters to tricare as well as the nutritionist. I am wondering if some of it has to do with us being w/ TriWest. They don’t seem to cover as much as TriSouth and Tri North on certain things.
Shannon you should see if you can find a similar page on the West site regarding the benefits & durable medical equipment that Amanda posted above. Hubby said the benefits should be the same no matter..
I am so glad to see that Tricare has covered Neocate for someone! My son has severe milk and soy protein allergies and his doc is considering a diagnosis of celiac’s since he bleeds internally whenever he eats these three foods. Neocate is costing us $65/can out of pocket and Tricare’s Express Scripts is saying they won’t cover it because it’s an over the counter product. I’m so upset! I haven’t stopped shaking since getting off the phone with them. They said I could appeal it, but it takes 90 days for a decision. His doc wants him drinking Neocate Jr and EO28 Splash and eating Neocate Nutra- nothing else until we have more answers. With the holidays here, it’s hard to get into the allergist’s and the gastro’s offices for the more definitive tests I’m sure Tricare is going to request. His doc doesn’t feel comfortable performing the scratch test (not an allergest) or the biopsy (not a gastro specialist!). Frankly, I agree with her. I just need some financial relief. I have three other little ones to feed…on one small E5′s income. If you have any tips, I’d really appreciate it because I feel like I’m beating my head against a brick wall every time I call Tricare’s Express Scripts. I told my husband I really need a stress doll with the company’s name on it!! LOL.
I am so glad to have found this site. I have 8 month old twins and one twin has severe eczema. I have been battling with doctors for months and have had allergy testing done but the basic testing came back negative and everyone just wants to keep him on steroids (creams and even prednisone.) Not accepting this and not wanting to expose his little body to these awful drugs 3 pediatricians, two allergists, a dermatologist, and finally a trip to an urgent care dr later I spent over $500 and took him to a natropathic doctor who did a blood allergy test for delayed allergies and intolerances and we found the culprit to his awful allergies – milk, corn, and coconut. The corn and coconut oil are in the majority of formulas with the exception of Alimentum ready to feed (corn is in the Alimentum powder.) I put my baby on this $11/day formula and he is completely cleared up. Its amazing. The only issue is having to to spend nearly $400 on his formula, and a couple hundred more on the other twin, we are going broke! I spoke to Tricare (we are active duty army) and they just told me I needed insurance codes….Walgreens wouldn’t help and just said “we’ve never seen insurance cover it.” After reading some of your experiences I am thinking of trying to fight this. This is the only thing he can drink without his body being a total infected red rash and his beautiful hair is finally starting to grow back (he had bald spots on the back of his head due to the rashes.) We are in WA now and it is not a state with legislation covering this…just curious if anyone has any other pointers to fight this battle. Thanks!!
Good luck Shannon! I can email you the codes that I have, just email me at kim@accidentalmommies.com. I was never sure exactly which code they needed but I can give you the ones from our paperwork.
Our doctor really went above and beyond by answering Tricare’s follow up questions and in the end they deemed it “medically necessary” and paid for it…I think they covered 80% which is huge.
Also, the Neocate website has resources and a sample letter for your doctor to submit to Tricare that may help you, even though you are not using Neocate.
I am about to go through the process of getting TriCare to pay for my sons formula..Pregestimil. It is $30 a can…I went through the same thing as far as breast feeding..when you are planning on breastfeeding and then have to spend so much money on formula it kind of hurts your bank account. It’s worth it, but just way to expensive..I talked to the nurse (she does all the referrals/Prescriptions for TriCare)…and she said that they will probably not pay for it…so here goes trying. My son is constipated on any other formula, he would not go without a laxative, we finally found a formula that will allow him to go.(he’s been constipated for a month now!…and he is only 2 months old!).
Good luck Robyn, if your doctor can prove to Tricare that it is “medically necessary” they should cover it. Be persistent.
Thanks for posting this. Our son was just diagnosed w/ esophilic esophagitis and needs neocat/elecare because of his severe allgeries. I have to call Tricare on Monday but thank you for giving us hope that his formula can be covered.
Cris,
Good luck with Tricare. It wasn’t easy — make sure to use some of the buzz words like medically necessary. If you need some additional info about what our authorization letters said, I can email you some of the codes and the language on there. Then when you call you can tell them you know someone who went through it in case the person you talk to can’t find it (which will be likely – it’s good insurance but nothing is ever easy). kim@accidentalmommies.com
Good luck!
Hi
I have just been told my daughter needs Neocate. She is 3 months and just lost 6 ounces this last week. She has only gained about 1.5lbs since she was born. My husband is Active Duty Navy. We are Tricare standard. DO you know how I begin to try to have them cover this? Thank you!