Any experience with Neocate or similar formula?
April 15, 2010 12:28 PM Subscribe
My 6-week-old daughter was recently switched to Neocate infant formula due to her digestive issues (specifically G.E.R.D.), after trying a bunch of others with no success. If you've been down this road, did you notice that your baby seemed to eat less, at least at first, and how the heck did you pay for it?
One of my twins has had significant digestive issues (gastroesophegeal reflux disease), and after trying lots of other options, has been put on Neocate infant formula. She'll be 6 weeks tomorrow, but was born 4 weeks early. While on other formulas, she ate 3-4 ounces, minus a decent amount of spit/drool. With the Neocate, she falls asleep after 2 (her brother takes 4.5 ounces per feeding). It's entirely possible that she's *keeping down* as much food, but this still seems concerning. Also, she seems to be sucking pretty aggressively on the bottle, but not getting as much formula as quickly as she used to. FWIW, she used to resist letting the bottle in, and is already much more willing to let the bottle in/attempt to eat. I know you're not my doctor, and we have already called the pediatrician, but if you've been down this road before, have you had a similar experience? Was it just an adjustment phase, or did you do something actively to help your child?
Also, we're in MA with Medco insurance for prescriptions. Medco has stated that they won't cover Neocate because they classify it as an OTC food, contrary to the FDA who calls it “Exempt Infant Formula” which must be used under medical supervision and is not sold over the counter or at retail level. If you have been down this path, were you able to get insurance to pay for it? The Neocate website has a number of resources (including a sample appeal letter), but any personal stories would be appreciated.
Thanks!
One of my twins has had significant digestive issues (gastroesophegeal reflux disease), and after trying lots of other options, has been put on Neocate infant formula. She'll be 6 weeks tomorrow, but was born 4 weeks early. While on other formulas, she ate 3-4 ounces, minus a decent amount of spit/drool. With the Neocate, she falls asleep after 2 (her brother takes 4.5 ounces per feeding). It's entirely possible that she's *keeping down* as much food, but this still seems concerning. Also, she seems to be sucking pretty aggressively on the bottle, but not getting as much formula as quickly as she used to. FWIW, she used to resist letting the bottle in, and is already much more willing to let the bottle in/attempt to eat. I know you're not my doctor, and we have already called the pediatrician, but if you've been down this road before, have you had a similar experience? Was it just an adjustment phase, or did you do something actively to help your child?
Also, we're in MA with Medco insurance for prescriptions. Medco has stated that they won't cover Neocate because they classify it as an OTC food, contrary to the FDA who calls it “Exempt Infant Formula” which must be used under medical supervision and is not sold over the counter or at retail level. If you have been down this path, were you able to get insurance to pay for it? The Neocate website has a number of resources (including a sample appeal letter), but any personal stories would be appreciated.
Thanks!
Also, it's important to feed the babies on cue rather than on schedule. There's no need to schedule feedings for a formula baby any more than there is for a breastfed baby. If she's hungry, feed her, whether it's been half an hour since she last ate or four hours since she last ate.
posted by zizzle at 12:57 PM on April 15, 2010
posted by zizzle at 12:57 PM on April 15, 2010
Does she need a faster flow nipple?
And I do understand the need to be on a schedule. With multiples, it's how you have to live sometimes.
I've asked some friends with twin/reflux experience to look at your question, so I hope I'll be able to get you some helpful info.
My boys (also multiples) were born at 33 weeks, so I do feel for you, though they didn't have reflux.
posted by pyjammy at 1:03 PM on April 15, 2010
And I do understand the need to be on a schedule. With multiples, it's how you have to live sometimes.
I've asked some friends with twin/reflux experience to look at your question, so I hope I'll be able to get you some helpful info.
My boys (also multiples) were born at 33 weeks, so I do feel for you, though they didn't have reflux.
posted by pyjammy at 1:03 PM on April 15, 2010
Our daughter had pretty bad reflux issues until we (reluctantly) put her on baby Zantac. Once that took hold (about 48 hours) she did had less feeding cycles and spat up a -bunch- less. IANAD but sleeping after feeding is usually a pretty good sign.
posted by Ogre Lawless at 1:16 PM on April 15, 2010
posted by Ogre Lawless at 1:16 PM on April 15, 2010
I'm the mom of a preemie who was born at 32 weeks. Here's what I think based on my experienced.
1. Did anyone ever talk with you about a time limit for preemies when feeding? We were told that you had a 30-minute window to feed them, and any time the baby was awake past 30 minutes during the feed, they were actually expending more energy than they would gain from the feeding (which was 2-3 oz). Since your girl is falling asleep, I am wondering if this is the case, if she just gets too tired trying to feed. Have you brought this up with her neonatologist? (I have also found that most pediatricians do not know enough about preemie issues, especially relating to the gut, so I would stick with the neonatologist, if possible.)
2. I'm assuming your physician has indicated that Neocate is medically necessary on the prescription. If that has been denied to be filled under your benefit plan, you may want to appeal the decision through the established appeals process. If your health plan is an employer's self-funded plan, you may have some leverage to appeal this through the employer, as well. The appeal process should be explained in the Summary Plan Description or Certificate of Coverage.
3. Additionally, you may be able to reach out to the manufacturer of Neocate for assistance, or as the neonatologist for sample cans.
My daughter's neonatologist prescribed her a human milk supplement that I was supposed to mix in to my breastmilk (I pumped exclusively) which was not covered by insurance, either. An alternative that we could use, because we just needed to increase calories, was to mix higher-calorie formula in to the breastmilk, but this should only be done under your neonatologist's direction. I don't know if that is a possibility for you. That was significantly less expensive than the human milk supplement, too.
Some babies are just really enthusiastic when offered food, they get frantic and don't seem to get much down. If your daughter's physician has affirmed there's no problem with her suck/swallow/breathe coordination, then she just might be a little too excited about feeding time. I am trying to think back to when my girl was 6 weeks old, and I am pretty sure she took 2-3 oz. every 3-4 hours.
Best of luck! And congratulations!
posted by FergieBelle at 1:25 PM on April 15, 2010
1. Did anyone ever talk with you about a time limit for preemies when feeding? We were told that you had a 30-minute window to feed them, and any time the baby was awake past 30 minutes during the feed, they were actually expending more energy than they would gain from the feeding (which was 2-3 oz). Since your girl is falling asleep, I am wondering if this is the case, if she just gets too tired trying to feed. Have you brought this up with her neonatologist? (I have also found that most pediatricians do not know enough about preemie issues, especially relating to the gut, so I would stick with the neonatologist, if possible.)
2. I'm assuming your physician has indicated that Neocate is medically necessary on the prescription. If that has been denied to be filled under your benefit plan, you may want to appeal the decision through the established appeals process. If your health plan is an employer's self-funded plan, you may have some leverage to appeal this through the employer, as well. The appeal process should be explained in the Summary Plan Description or Certificate of Coverage.
3. Additionally, you may be able to reach out to the manufacturer of Neocate for assistance, or as the neonatologist for sample cans.
My daughter's neonatologist prescribed her a human milk supplement that I was supposed to mix in to my breastmilk (I pumped exclusively) which was not covered by insurance, either. An alternative that we could use, because we just needed to increase calories, was to mix higher-calorie formula in to the breastmilk, but this should only be done under your neonatologist's direction. I don't know if that is a possibility for you. That was significantly less expensive than the human milk supplement, too.
Some babies are just really enthusiastic when offered food, they get frantic and don't seem to get much down. If your daughter's physician has affirmed there's no problem with her suck/swallow/breathe coordination, then she just might be a little too excited about feeding time. I am trying to think back to when my girl was 6 weeks old, and I am pretty sure she took 2-3 oz. every 3-4 hours.
Best of luck! And congratulations!
posted by FergieBelle at 1:25 PM on April 15, 2010
how the heck did you pay for it?
You're going to have to appeal with the insurance company, which is a pain in the neck.
I'd suggest that you enlist the help of a family member (a grandparent or aunt) or good friend to do the bulk of the work on this on your behalf. Your doctor's office might also be helpful.
posted by anastasiav at 2:29 PM on April 15, 2010
You're going to have to appeal with the insurance company, which is a pain in the neck.
I'd suggest that you enlist the help of a family member (a grandparent or aunt) or good friend to do the bulk of the work on this on your behalf. Your doctor's office might also be helpful.
posted by anastasiav at 2:29 PM on April 15, 2010
Response by poster: Thanks everybody for the help so far. To address some of the questions/suggestions:
- We have started the appeals process with the insurance company, with the help of both the Neocate folks and the doctor's office. Perhaps not surprisingly, the Neocate people are eager to help patients find help paying for the product :). If anybody has any specific experience either within MA, or with Medco, though, that would be super-helpful.
- We tried a faster flow nipple by accident a few days ago (on the old stuff) and it didn't end well. We were wondering why the food was positively SHOOTING back at us! :) Maybe we'll give it another whirl on the new formula, though
- With the twins, it's been super important (and really helpful) to have them on the same schedule. While we don't try to force them to eat every three hours, at least one of them will start looking for food every 3, and when one eats, we make sure the other eats. Otherwise we'd go NUTSO :)
- We have been trying to work within time limits, but they tend to still be hungry at the end of it. Our son has been eating faster lately, but when we would try to enforce the limits, they'd just scream at us because they still wanted the bottle.
- We'll be working with the docs, as well as a local multiples support group, to get as many samples as we can. Hopefully that'll help to offset some of the cost.
posted by um_maverick at 3:05 PM on April 15, 2010
- We have started the appeals process with the insurance company, with the help of both the Neocate folks and the doctor's office. Perhaps not surprisingly, the Neocate people are eager to help patients find help paying for the product :). If anybody has any specific experience either within MA, or with Medco, though, that would be super-helpful.
- We tried a faster flow nipple by accident a few days ago (on the old stuff) and it didn't end well. We were wondering why the food was positively SHOOTING back at us! :) Maybe we'll give it another whirl on the new formula, though
- With the twins, it's been super important (and really helpful) to have them on the same schedule. While we don't try to force them to eat every three hours, at least one of them will start looking for food every 3, and when one eats, we make sure the other eats. Otherwise we'd go NUTSO :)
- We have been trying to work within time limits, but they tend to still be hungry at the end of it. Our son has been eating faster lately, but when we would try to enforce the limits, they'd just scream at us because they still wanted the bottle.
- We'll be working with the docs, as well as a local multiples support group, to get as many samples as we can. Hopefully that'll help to offset some of the cost.
posted by um_maverick at 3:05 PM on April 15, 2010
With regard to the nipple flow issue, you may need to try an assortment of nipples/bottles before hitting on the right combination. My lactation consultant told me to fill two bottles with different nipples halfway with water and turn them upside down to watch the rate of liquid flow out. You may be able to find a nipple that splits the difference between the two you have already tried. Best wishes and congratulations!
posted by defreckled at 6:21 PM on April 15, 2010
posted by defreckled at 6:21 PM on April 15, 2010
We had feeding problems with our newborn and it took a week or so to learn what worked for her.
If she is falling asleep but you know she needs more food you can just wake her up again. Take a few layers off and let her cool down, or if necessary put a wet flannel on her forehead rouse her or change her nappy during the feed. If she's sucking but not swallowing you can encourage that by stroking just under her chin (though don't continue to stroke there once she's begins swallowing). Another thing to check is whether she hasn't learnt to breath out after drinking because she may be putting too much suction on the bottle... it'll be quite obvious that's happening so just turn the bottle from side-to-side to break the seal or put your little finger in the side of her mouth.
We also had problems with the newborn teats. Our midwife told us that feeding should take about 10-20 minutes (for 150ml=5oz) so we tried larger 3-6 month teats and they worked well for us when the teat hole was facing down (slow flow). We needed to burp her more often with this approach but at least she's getting the food and she doesn't tire herself out. Be sure to check for fatty deposits around the teat hole too and soak the teat in salty water to help loosen that.
posted by holloway at 8:05 PM on April 15, 2010
If she is falling asleep but you know she needs more food you can just wake her up again. Take a few layers off and let her cool down, or if necessary put a wet flannel on her forehead rouse her or change her nappy during the feed. If she's sucking but not swallowing you can encourage that by stroking just under her chin (though don't continue to stroke there once she's begins swallowing). Another thing to check is whether she hasn't learnt to breath out after drinking because she may be putting too much suction on the bottle... it'll be quite obvious that's happening so just turn the bottle from side-to-side to break the seal or put your little finger in the side of her mouth.
We also had problems with the newborn teats. Our midwife told us that feeding should take about 10-20 minutes (for 150ml=5oz) so we tried larger 3-6 month teats and they worked well for us when the teat hole was facing down (slow flow). We needed to burp her more often with this approach but at least she's getting the food and she doesn't tire herself out. Be sure to check for fatty deposits around the teat hole too and soak the teat in salty water to help loosen that.
posted by holloway at 8:05 PM on April 15, 2010
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If your 6 week old weighs 5 lbs, then in 24 hours she should take in 12.5 oz. If she weighs 7 lbs, then in 24 hours she should take in 17.5 oz in a 24 hour period. Some days more, some days less. For a premie, it may be different because she may be smaller and may not need as much food right off. Her brother may just be hungrier or he may be filling his need to suck by eating more. No way for me to know without seeing the baby.
2 oz/feed for a 6 week old preemie offhand doesn't sound that bad. But it really depends on her intake in a 24 hour period. I would keep a log for a week or so about how much over a full 24 hours she's taking in. I think you'll find she's getting plenty.
I wish I could help you with the Neocate issue, but I don't have any experience in that area. I wish you the best of luck in getting it covered!
posted by zizzle at 12:55 PM on April 15, 2010