Battle with Neocate bottle

[Anonymous]

Hi Ladies,

I posted several times in the past about my daughter, Emily’s situation. Unfortunately, thru’ all the temporary ups and consistent downs, we have not seen any improvement in her situation. She will be turning 1 yr old in a week, yet her feeding aversion is as strong as ever. I feel so down and depressed that I don’t even know if where to begin.

After trying almost everything under the sky (formula and meds), the ped has now recommended Neocate. We’ve been trying it for a full wk and she absolutely hates it. Can you offer any advice on how to mask the awful taste so that she can take an adequate amount (by that, I’m only asking her to take 5oz) 3 times a day.

I’ve been acting like a mad scientist for the past week and have tried the following so far;

– mixing with pear juice

– mixing with sugar

– rice water (rice and pork/chicken broth) and egg

– concentrating it so that only 3 to 4oz of water is given and then feeding her liquids (water, soup or juice afterwards)

– forcefeeding concentrated solution thru’ a seringe (hoping that she would take it like medicine)

– mixing the powder with banana baby food or egg

– trying different nipples and consistencies

– praying and praying that she will take the bottle!!!

I know that 1 yr of age, she can go on homo milk or soymilk, but because her intake of solids is minimal, I really want to keep her on formula. She was gagging/vomitting persistently on dairy formula and so far, vomitting has decreased on Neocate so I really don’t want to give up on this so fast.

My other concern is will her appetite always remain small if all she takes each time is about 3oz. For instance, if her stomach is used to small volumes, will it never stretch and will she never be able to eat large volumes as she gets older? I know that she can take larger volumes. When times were good, she would be able to drink 6 to 7oz with or without rice cereal, but now, all she will take is 3 to 4oz with the Neocate.

Have any of you started Neocate with your babies at this age (1 yr) and been successful? Or is this a battle that I may likely lose since she already has such a bad feeding aversion?

Any advice/success stories would be greatly appreciated!

Thanks,

Sarah

(DS: Emily – born Jan 2006, Meds: Domperidone, trialing Neocate)

[Anonymous]

I don’t know much about this because I BF Brianna, but I did a search for you…maybe this will help. I Know I remember reading other posts about this too…I will try to find some more.

https://www.infantreflux.org/forum/forum_posts.asp?TID=6600&a mp;KW=neocate

[Anonymous]

Is she eating any solids? Can she have oatmeal or any other baby cereal? Maybe if you make her cereal with it and add some fruit it will be more palatable.

Myles gave up his bottle at 7 months of age so one I thing I did to get breast milk or formula into him was to add about an ounce to each jar of baby food he ate. It made it thin and runny and considerably messier to feed, but he did get his milk down that way.

Has she ever been on a high dose of a PPI like Zegerid or Prevacid? Is it possible she never responded to meds before because her dose was too low? This is a very common problem (docs prescrbing doses which are too low). I woudn’t give up completely on the possibility of a PPI helping her until and unless she was ever on the high dose that http://www.marci-kids recommends. Some babies do fine on lower doses, but my son definitely did not. He did not improve until he was on the dose these researchers recommended for him which was 10 mg / 3 times per day (he was then 5 months old and 16 lbs.).

Good luck. You must be so tired of all of this. I really feel for you and I hope the answer is right around the corner for you.

[Anonymous]

Hi Sarah,

Sorry to hear that Emily is still having problems. When do you get in to see the GI?

I was wondering about Emily’s symptoms. Does she vomit or have silent reflux? I was surprised to see that she isn’t on the prevacid anymore. I personally would try to get her back on just to make sure that she isn’t causing damage to her esophagus from the reflux. When they already have such a bad feeding aversion, they don’t need anything to compound the problem. If she feels at all uncomfortable when she’s eating, that will only make thigns work. I know that it’s near impossible to get her on the marci-kids dosing here, and I know that none of the docs at Sick Kids will prescribe you anything near that amount- the highest they will go is 1.4mg/kg twice daily, and even trying to get that out of them is a struggle. But I would try to get her on the best dose that you can. I think that this point that she has had a feeding aversion and feeding issues for a long time, that things are unlikely to immediate erase just from a high dose of meds, but I think that the meds can only help- sort of a better safe than sorry approach.

As for the neocate, it’s hard to change formula preferences when they’re a year or older. Usually they like what they like. But that doesn’t mean it’s futile, just that it might take more persistence if that’s the route you want to go. What kind of formula what she taking before that? Can you mix it in very slowly with that and see if she’ll take it? As for the small stomach, our therapists have told us that. We have heard that if Hailey’s stomach doesn’t get used to taking in larger volumes, then she won’t want to eat much b/c she’ll be full, and she also won’t be able to eat as much. I don’t know how true it is, but she’s never eaten much at one time. If she won’t take neocate can you try rice milk with a multivitamin at this point since she’s over a year. Also, have you eliminated soy and dairy from her diet otherwise, or is it just the neocate.

Anyhow, good luck.

[Anonymous]

Maybe golden syrup. Then gradually reduce the amount over time? Not sure it is to different than sugar though? Pure vanilla essence? I hope you find the solutions soon.

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