Author Topic: Possibly switching to Neocate?  (Read 2006 times)

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Offline b_weezy22

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Possibly switching to Neocate?
« on: October 04, 2010, 03:00:26 am »
So my 10 month old baby finally weaned from the breast to nutramigen about 2 weeks ago. I was so relieved to have freedom from nursing around the clock. I was still nursing him at night and he was cuddly with me in the day and it was great! Until I realized that after starting the nutramigen, he hadn't pooped in 3 days. Then he had exploding diarrhea and some vomiting for the days following. It was bad. Our pediatric gi doc (who'd recommended the nutramigen) was on vacation all last week, and the best advice the family care doctor could give was "start breastfeeding again." It was good enough advice except my milk supply was very low (only enough for nighttime feeds), and he was refusing solids altogether! I saw her on Wednesday. I nursed and nursed for Wed, Thurs, Fri, and supplemented with defrosted bm to satisfy him. I was almost out of ebm on Friday so I called back to the GI office, and the doc there never deals with kids (just a gi doc) and he gave us alimentum as a last resort. We tried it on Friday but the diarrhea came back. He was doing fine as soon as I'd switched him to the breastmilk and diarrhea again with the alimentum so it was obvious it was an allergy. Saturday I'd run out of options, and without enough breastmilk I was running short on options! I took him to the ER, nobody else was open. He was crying out of hunger, but still refusing solids and nursing on my empty breasts at every opportunity. We talked to the ER doc but she was clueless. She offered him applesauce, but saw firsthand that he wouldn't entertain even a little of it! She wrote me a prescription for Neocate which seemed like a good idea, but Walgreens said they couldn't have any until Monday! I went to the grocery store and bought goats milk (several friends suggested it). I nursed him through the night, and gave him the last bag of ebm at 6am. I nursed him again at 9 and at 11 he was starving. I gave him the goats milk and he took it without any objections! He started rubbing his face, but I thought he was just tired. He took a nap, and at 3:45 I gave him another bottle of it and immediately he broke out in hives around his mouth, wherever the milk had touched his skin! :( So.. I think I can nurse him enough tonight, I'm praying he won't cry too much, and I will call the gi doc in the morning. I'm at my wits end!!!! Please, any advice would be great. The neocate is soooo expensive, we're on wic as it is, I can't afford $50 a can even if we need it!


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Re: Possibly switching to Neocate?
« Reply #1 on: October 04, 2010, 19:45:37 pm »

Ok, so it definitely appears he has a milk allergy, pretty severe if he can't tolerate nutramigen or alimentum (my dd2) couldn't tolerate those either.  Not entirely surprised by the goats milk reaction, poor thing, because cow's milk and goat's milk proteins are pretty close.

Do you know if your LO can tolerate soy?  Many babies who are intoleranct to cow's milk can't tolerate soy, but there are others who can.  If your bub is ok with soy, than soy formula would be a less expensive option.

Did you give benadryl for the hives?  Could help him feel better.

I would suggest getting a referral to a ped allergist as well to see about any other allergies and to put together a game plan for solids.

Will WIC cover neocate since a prescription has been written (I'm assuming you are in the US)?  Also, can your dr give you any samples.  What about insurance, do you have health insurance?  They typically cover a large amount of the cost, but dr's have to fill out some paperwork.

Hoping your little guy feels better soon and you get the neocate asap!  
« Last Edit: October 04, 2010, 19:47:49 pm by scarlett'smom »

Offline Rachel_Momto3boys

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Re: Possibly switching to Neocate?
« Reply #2 on: October 05, 2010, 02:14:18 am »
I agree with the previous post, it sounds like your LO has a milk allergy and since Nutramigen still contains partially broken down milk protein chains, it sounds like your LO could still be reacting to it. Because Neocate is an elemental formula and made up of individual amino acids, it is 100% hypoallergenic and the safest and easiest for kids with milk allergies to digest.  The good news is that Neocate is generally reimbursed by most state WIC programs based on medical need and when ordered by a physician.  Are you in the U.S.?  Let me know what happens and if you have any questions about Neocate.
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Offline lizzyr

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Re: Possibly switching to Neocate?
« Reply #3 on: October 05, 2010, 10:52:32 am »
Just be warned, neocate tastes pretty bad, you may have a little trouble getting him to take it after having breast milk. Some people end up flavouring with golden syrup or vanilla and often have to introduce it gradually mixed with breast milk. As your LO is already 10 months, he'll probabaly be wise to a change in taste so may put up a fight! Don't want to be all doom and gloom, he may take it with no problem - but through if you are warned, then you can prepare for it and can try him with sweetened / watered down / 50/50 breastmilk if he refuses intially.

Offline Jimbob

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Re: Possibly switching to Neocate?
« Reply #4 on: October 05, 2010, 19:58:38 pm »
My lo was 11 monnths whe he was put onto neocate. He did not like it so we mixed it at first. If I remeber correctly it took around 2 weeks to be on neocate only. I do know there are people whose babies have taken it without a problem but also ones who had much more difficulty than we did. If you end up trying neocate I hope your lo takes to it easily.

James has atopic eczema, multiple food allergies, asthma and late talker

Offline b_weezy22

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Re: Possibly switching to Neocate?
« Reply #5 on: October 07, 2010, 03:19:14 am »
Thanks for the advice ladies, really.  Soy makes him really sick too.. I got the neocate prescription over the weekend and got one can that I paid for out of pocket so that we could get started. I went directly to the wic office with a form i'd printed off the internet which claimed that with the doc's signoff that wic would cover it. That was a no-go. Wic will not cover it at all. Maybe in another state, but not here. They said possibly the state might cover it, but to try our insurance (tricare through the army) and maybe they will, if they reject us, try the foodstamps people, and if they reject us then to come back to wic.. Apparently the neocate is just too expensive for them to pay (duh!).. Anyway, so we've been fighting with the insurance since Monday to cover it. The first person I talked to from the insurance co. said it's covered 100% but they are still contemplating the authorization. :(

My breastmilk stash from the freezer is gone, so I dont have that to mix with the neocate, but I tried pedialyte and karo syrup. He doesn't like it at all, so that sucks, but I will try to go cold turkey for a day or 2 with the neocate and hope for the best! Oh, and my other child has been sick to top all this off, his virus turned into hives today so that's a joy!! And my hubby leaves for 6 weeks starting Saturday. I'm going crazy!

Offline lchuynh

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Re: Possibly switching to Neocate?
« Reply #6 on: October 15, 2010, 10:07:28 am »
Oh dear, big hugs to you.  Sounds like you are having a pretty rough time at the moment.

You might find your LO will just take it since it sounds like he is hungry. He refuses all solids? How about rice cereal? My LO was pretty fussy with solids for a long time but would eat a bit of watery rice cereal.

How often are you expressing at the moment to increase your supply again? I was in a similar situation with running out of bm when trying various formulas; what made it worse was that DS refused the frozen bm. I found myself expressing every 2 hours at one point to get enough milk for him. It was pretty stressful but that was the only way to build my supply up again.

Good luck with the insurance situation. Neocate is expensive, and unfortunately if your LO is that sensitive then he needs it. And that's also why you got insurance.

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