Neocate Horror — HELP!

[Anonymous]

She has never had a rash except for eczema on her face and in her hair. How much prevacid where you giving your daughter? She has tried every kind of formula it seems like. She had lots of gas but it seems like her gas is much worse on neocate. I am so frustrated and I feel so helpless. I just want her to feel better! What kind of probiotic did you use? Did you ever thicken your neocate?

[Anonymous]

Hmmm. Well eczema is a sign of allergy and if you’ve also tried a lot of formulas…it sounds like she does need neocate? I SOO know how you feel, though, in that the mystery drives you crazy and you just feel awful seeing your baby this way. It’s really unfair and makes me mad that moms and babies have to go through this…

We were also doing 15mg morning and night. Callie’s gas was also just terrible terrible terrible for a good while when we first started neocate. I hate to say that b/c it does take time and you want that magic solution right away. Everyone kept saying it will take two weeks – I guess that is average – but it took our daughter longer b/c her insides were just so torn up and needed to heal. I figured neocate is basically sugar water with vitamins so it just HAD to work. And…it did.

We did and still do this kind of probiotic. It’s a bit pricey but it took the mucus out of her stools. A huge percentage of our immune system is in our intestines so I think probiotics are great!

http://www.rockwellnutrition.com/Ther-Biotic-Infant-Formula-by-Klaire-Labs.html

1/4 teaspoon or so a day in one bottle.

I know patience stinks right now – but try to stay the course for at least a little while longer. I know it is so scary and you feel helpless but try to give her insides time to adjust. We started solids by 5 months b/c she still had some diarrhea from neocate so needed some bulking up. I never thickened her bottles w/ rice but I know some moms do – I just didn’t want to complicate things. I started doing just a few spoonfuls of homemade sweet potato puree and avocado – just for something real in her system…it helped her a lot and that is when she really started making a turn.

Another thought is some babies just can’t take prevacid. How long has she been on it? I know it takes awhile for THAT to work too….

[Anonymous]

thank you so much for the information! She has been on prevacid since she was 3 weeks old, she is 3 months old now. She seems ok during the day, but nights are the worst.

[Anonymous]

That is awesome that she is doing ok during the day. My baby was just miserable all the time! Sooo that is great to hear! Have you tried propping her mattress a little? I put Callie in her little infant seat for what seemed like forever. I put it IN her crib so she slept upright. That helped her reflux sooo much. Do you have one of those seats? A carseat is not good b/c it puts pressure on her little bellies and makes reflux worse – this seat I had kept her legs more straight. If you have something like that…or can prop her mattress – I bet that would help. I also made a “U” with a towel under her sheet so it helped her from sliding down her mattress if that makes sense. Try it tonite and see if it helps??

[Anonymous]

Right now she sleeps in her swing or her rock and play sleeper so she can be propped up a bit. I ordered a tucker slig so she can sleep in her crib propped up. Thank you so much!

[hellbennt]

what is medicine schedule? perhaps you can shift some thing around and get the night time to be better?

[Anonymous]

She currently takes 15 mg of prevacid before bed and in the morning.

[hellbennt]

do you have any zantac around? you could give a dose 4 hrs after the last prevacid dose… hellbennt2012-02-14 17:58:19

[Anonymous]

My daughter has been on Neocate since November 2011. She was prescribed this formula because of the severity of her GERD. She was not officially diagnosed with a food allergy. I think she is going to have some degree of reflux no matter what formula she is taking. I have noticed that she has had congestion and upper respiratory issues. I have also noticed an increase in mucus production with Neocate. I do not know if the two are related. She had very runny stools the first 4 months on Neocate. Even though she mostly feeds through G-button, we still try thickened bottles. She does not seem to care for the taste at all. I actually just tried Isomil Soy tonight for the first time, aned she seems to really be interested in the bottle. She is never interested in food, so I am hoping this works!

[Anonymous]

I think neocate and mucus are absolutely related. We had the same problem while my daughter was on it. It is the corn syrup. It is one of the top ‘foods’ that cause mucus. I ended up making a homemade chicken broth about twice a week and putting it in her bottles! I know it sounds strange – but it helped a lot. She was so mucusy and congested that she never slept flat until I started this. I had to feed her a bit more frequently (the broth isn’t very high in calories) – but it got us through until she was able to be on solids and homemade almond milk. If the soy works – great – if not – I can send you a link to the recipe I used. It is full of calcium and TONS of minerals. Her skin, hair and everything changed when I started putting 1-2 ounces in each bottle. I think I started this around 6 months and continued until she was 13 months. A lot of work but whatever cut down on the mucus and gave her some real food albeit liquid – I was game. Good luck, mama!

[Anonymous]

Thanks Angie! I would love to try your recipe. I we have had about 4 soy feedings and so far she has tolerated well. Had some dry coughing early am but not the mucous cough. I know it will take a week or two at least to tell. I am glad to know we weren’t the only ones experiencing this. Lucky to have found this forum! Thanks again!

[Anonymous]

That is great! Ok – here is a quick article on ‘bone broth’ – I never used beef for her – just chicken. It was a lot of work to keep up – my husband and I ate a lot of organic whole chickens throughout the time I made it for her! Anyway – I’d roast is simply – with some salt and olive oil. We’d save the bones and I’d simmer overnite in my crockpot with water and a splash of cider vinegar (this draws the nutrients from the bones). The secret I found was to not use too much water – just enough to barely cover the bones. After it got to the point the bones basically disintegrated (about 24 hours) – I’d toss it through a strainer and cool it down in the fridge. It sorta of gels when it cools. I’d make a lot at once and freeze it in cubes. I know it sounds sorta creepy – but I was desperate! My never ending search to figure out how to help her and get real nutrition in her brought me to this. I should make it more often now – but after six solid months of putting it in every bottle – I’ve taken a little haitus for now! Anyway – if you google ‘homemade chicken broth’ -or- ‘ bone broth benefits’ – you’ll find a lot. It’s super great for us – and helps the immune system – and definitely helped our wee one’s mucus from neocate!

Another benefit – it’s super for gut healing and reflux!

http://nourishedkitchen.com/the-benefits-of-bone-broth/angie c2012-03-05 08:38:27

[Anonymous]

I will definitely try this! She did vomit this morning so I don’t know whether to get her on Neonate or test the waters a little more with soy. She has had so many issues I don’t want to set her back at all. I had taken her off prilosec a little over a week ago and we are just on zantac but I may consider adding prilosec again. You really have to fine tune every aspect with babies that suffer from reflux. I may give this another day, but I think I will know

[Anonymous]

Oh…I know what you are going through. It is SO hard! My baby vomited SO much – sometimes I know it was b/c she was gagging on the phlegm from the neocate. But, neocate did help her stomach finally settle – she just couldn’t digest anything else. Her ped said – better to have mucus problems instead of stomach problems! But – when I figured out the broth helped – wow – what a difference! You can call me if you want – we’ve been through the ringer w/ feeding troubles! Just message me if you feel like I can help in any way!! I hear you on not wanting to set her back – you want to try new things to try to keep helping and wonder, “Is this it??” But don’t want to hurt her in the meantime! You’ll get through it!!

[Anonymous]

My child was 9 weeks premature and spent 6 weeks in the NICU. He went home on Elacare and his belly was a constant ruble and he literally pooped acid. My wife is a pediatrician so she immediately got him switched to neutramagen. He got better but after a week of it the cycle started all over so we switched him to neocate. Neocate worked wonders and our fussy baby finally slept and actually started sleeping a good 10-12 hours a night which was fantastic! We made his formula 22 calories and added thicken up to nector bc his reflux was so bad. Also his stomach seemed small bc if we forced him to take in ounces that he should have been he would throw it all up so we just added the extra calories to make up for it. We also started him on zantac twice a day then later added prevacid bc his spit up was still so acidic. He’s 11 month old, has 4 teeth, crawling and pulling up everywhere. His reflux is still horrible so and it still concerns my wife bc she said he should have outgrown it by now. At his one year old checkup we might get him allergy tested to see. But another thing, he doesn’t spit up near as much when we feed him table food so maybe that’s a good sign and his belly likes to spit up that nasty tasting neocate.

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