Throwing up Neocate?

[Anonymous]

I think this is my first post to this forum, but I’ve learned so much from reading it over the past week. I’m so glad there is a place where we can all learn from each other.

My 4.5 month old son Evan is a silent-refluxer, currently on Prevacid solutabs for nearly 3 weeks. He is exclusively breastfed. The GI found occult blood in his stools (which have been mucousy and green for over 2 months, during which time I excluded dairy, soy, egg, wheat, nuts, fish, shellfish, etc.). After 9 days on TED and still blood in poops, we decided to try a week of Neocate to allow his system to recover. Today he got his first 4oz bottle, and he threw up half of it after 40 minutes and the other half 30 minutes later. He has never thrown up before, once a day or so he spits up but nothing
like this. He’s more of a gurgly burper (burp, wet burp, swallow). The GI says he’s **never heard of this happening before** and suggested we go back to nursing for now but try Neocate again tomorrow, just in case it’s unrelated (e.g. he did have immunizations yesterday, but he’s had them before and never reacted like this).

Has anyone else had this experience on Neocate? Could this be an “adjustment” for formula, or does this mean he doesn’t tolerate the corn syrup and it’ll never work for us? We don’t know if he’s MSPI, but some kind of allergy is the most likely explanation for the blood in the poops according to the GI. (I’ve also tried one-sided nursing in case of hindmilk imbalance but that didn’t help, just decreased my supply).

Thank you,
Michelle

[Anonymous]

I would certainly take more than one day to know if he would tolerate and it took my son about a month to get adjusted to it. Can you just do 2oz bm and 2oz Neocate? Since he was exclusively breastfed, maybe 4 oz is too much at a time?

[Anonymous]

Hi and welcome!

There can be 2 reasons why this is happening. My son was also a silent refluxer (did not spit, only threw up into his throat and glerped/swallowed it back down) BUT when we first started Neocate, he threw up!

here’s why:

1) Neocate is SO thin! I know breastmilk is too, but Neocate is also just designed differently. It’s probably not sticking to him like BM did, but that doesn’t mean it won’t work and heal him! He just needs time. Trust me on this!

2) It is HIGHLY recommended to do a SLOW transition when you go to an Elemental formula. By that I mean 1-2oz of Neocate added to a bottle of pumped BM, like Erica suggested. It is not a tasty formula and again, it is made up TOTALLY different than anything else his body is used to and at first can cause GI upset if it’s given too quickly. But it will do its job once he is fully on Neocate!

Please read this article….it’s the best read I’ve ever seen RE: Elemetal formulas! 🙂

https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

My son was on Neocate for 14 months. He had blood and mucous in his stool even after using OTC hypoallergenic formulas. Neocate healed him and then his reflux improved a great deal and was completely under control with using prevacid & Neocate. Good luck!

jilly782008-10-23 07:58:58

[Anonymous]

Thank you, I think slowly adding Neocate is the way to go. The GI’s plan was to put him on Neocate for just 1 week to let his system recover, then go back to breastmilk only, so I need to keep up my milk supply. The slow introduction will means more than one week of pumping so I’d rather do bottles during the day with Neocate mixed in and nurse at night to keep up my supply until he can handle a full bottle of Neocate. Is there any reason he should have the Neocate at every feeding during the transition?

Jill, did you ever try to go back to nursing after he was on the Neocate? Does one week seem realistic to get rid of the blood in his poop? The GI says 97% of babies will get better with just 1 week (if they are formula fed it takes 2 weeks). If there is still occult blood after 1 week, he will assume the problem is not a protein allergy/intolerance.

[Anonymous]

Hi there,

Well, 1 week might certainly help, but you are right, it will take longer than that to introduce Neocate slower. You might be able to speed up the process if you notice he is ok once you get 1/2 & 1/2, know what I mean?

Also, I notice your first son has some allergies too. You might want to look into the TED diet while he is “resting” on neocate and while you continue to pump. Maybe you can get started with eliminating all foods (really hard I know) and with a baseline of “safe foods”. We have a forum here called TED or Total Elimination Diet and a few people are currently doing the diet.

Landen was only nursed the first few weeks mainly b/c I take a lot of medications (namely a class D seizure medication) that I didn’t feel comfortable using while nursing and I could only be off the med for so long after delivery. Also, looking at Landen today, I’m not sure how well he would have even done on TED (this is just my opinion of Landen) since he is intolerant to rice, pork, banana, tomato, dairy, soy. I mean, rice is supposed to be a “safe” food and he certainly cannot have it without GI issues!! I think Landen would have been one that would have ended up on Neocate anyway, however we have MANY successful TED mama’s here who can essentially make their breastmilk like Neocate. You might try PMing ‘erinntx’ or b’smom….and gosh I know there are more, I am drawing blanks right now, maybe they can give you a few ideas to get started. 🙂

jilly782008-10-23 12:45:24

[Anonymous]

Jill, that was my hope as well, to be able to create “safe” breastmilk. I was on TED for 11 days actually, and towards the end I actually saw the blood in the poop so I knew it wasn’t working (and the tests were positive). Someone on another site suggested I drop rice, which I did for one day in substituted quinoa, but the GI felt that his gut needed a total break from all protein before we could figure out what is bothering him (i.e. it’s so irritated now that it can’t handle anything until we let it heal first). So I’ll be doing some kind of TED for a while! Maybe I can just drink the Neocate myself?? ha ha ha

[Anonymous]

Oh you poor thing! I wish I could begin to tell you which foods to drop. It can be very confusing. We have a user here ‘PaulaB’ and her son was also intolerant to some of the ‘safe’ TED foods….even turkey!! Tricky tricky! It can take MUCH patience in figuring out and I commend all of you moms that go through with it!!! BFing is so good for refux babies, but I also understand how some just have to be on Neocate too. HUGE hugs!

And P.S. YUCK on the thought of you drinking the Neocate! I tasted EO28 splash (a highly flavored Neocate product and it was STILL HORRIBLE!!!!) LOL!!!

[Anonymous]

I just briefly (really briefly) skimmed this post b/c I’m on the way out the door to pick up Brodie from preschool but wanted to respond quickly. I will probably get back to it this afternoon or evening.

I was on strict TED for a little over 5wks before Evan’s diapers regulated (no more mucousy, turned yellow, no stinky gas, blood gone). He was 10wks old when it all started getting better. It took some trial & error but eventually I was just on potatoes, pears & squash/zucchini. So I had to take out rice, sweet potatoes & turkey. I was eventually able to add in beef & peaches. And that’s still my baseline. There were 2 reasons it took so long: 1) his colon was so irritated so it took a while to repair & 2) I was still eating offending foods on traditional TED.

HTH some & PM me if you have questions… I’ll read through all the responses later.

Hang in there.

erinntx2008-10-27 11:16:18

[Anonymous]

Hi there,

I’m so sorry to hear about your situation! I also did a very limited diet in order to continue breastfeeding and although it was extremely difficult at first, it was well worth it. My cousin has a baby who is 9 mos old and she’s been on a dairy/soy/peanut/fish/gluten/egg and i can’t remember what else free diet because of blood in the stools. It took a loooong time for the blood to completely disappear for her son (I think maybe 3-5 months on the diet?– I’ll find out). Strangely, he wasn’t a spitter upper, wasn’t fussy, but the blood in the stools was a HUGE concern, obviously. I will call her and get the details but it sounds familiar. I think it might take a while for the internal bleeding to stop even once the offending foods are out..? For us, when I took out the final offending food– gluten– (we didn’t have blood but he couldn’t sleep and would wake up ever hour and half for 18 mos straight)– when we took that out, although there was an immediate change within a week or so, it really was about six months of consistently doing the new diet — over that time I saw a true turn around. I know that sounds terrible, but sometimes it’s more of a long term thing. Granted, we didnt’ have blood like you, so it’s different in a lot of ways. I just think it’s good to hear about all these other stories to know what might be possible in a situation. I’ll try to get back with my cousins’ timeline for blood/diet changes. She has not tried formula so I don’t know about that angle.

[Anonymous]

Erin, our Evan’s are almost the same age! So did you find that even
after his colon repaired, you couldn’t re-introduce rice, sweet potatoes and
turkey without a reaction? Also did a doctor diagnose MSPI based on some sort of test, or did you figure it out by changing your diet? If I only knew what foods to avoid…it sounds like anything could cause a reaction. What about IgG testing?

Anne, I’ve heard of diets and Neocate taking months to show improvement. I think our GI wants to scope Evan if the week on Neocate doesn’t clear things up. He seems so much worse on formula but then again he got a cold around the same time we introduced Neocate so it’s hard to tell what’s making things worse. And he’s been up every 1-2 hours at night for a long time, I can only get 3 hours in a row if my husband takes over. We keep thinking “the answer” is just around the corner but are now realizing this is going to be a long process.

[Anonymous]

Michelle,

I’m so sorry to hear about the sleeping! I can honestly say, I had only two 4 hour stretches of sleep in the first 18 months. It was insane. I wasn’t functioning well. I was mostly a stay-at-home-mom and he was our first/only child, so that’s what got me through. We could stay in bed until 9 am whcih we did most days because we were so exhausted from being up all night. We were often in pjs until noon. We just learned to operate more slowly and I got used to feeling less mentally there all the time. It will really help you to begin to try to slow down, which is really difficult for most people, but you have to help yourself and the baby by letting more things go when you’re not sleeping like this.

When I started sleeping again I couldn’t believe what an energy rush it felt like. Anyways, I just want to say that I’ve been there and I know it’s terrible. But eventually it will get better. Sometimes it just takes having that “aha” moment, for us it was when i was so down and really ready to throw in the towel and I basically decided to give up gluten in our diets. My dh thought I was C-RAZY– but it worked wonders. I’ve recently heard of another child (friend of a friend thing) who couldn’t sleep more than an hour and half at a time until gluten was taken out of their diets. We are a very unusual reflux case, however. Most folks on this forum begin sleeping again MUCH sooner than that. And most babies on this forum begin improving and are med free by age 2– most a lot sooner. And most are off special diets by then (even way before then), too (my son is still on zegerid and a special diet and he’s four). So, there is a lot of hope for you. I also remember telling my husband nearly once a day that i had a new idea as to what was the cause of our problems. I was always hatching a new plan, and it sort of kept me hopeful, exactly like what you’re saying with feeling like the answer is just around the corner. Keep us posted and I’ll try to reach my cousin– she’s not on this forum– but she sounds very similar to your situation. hang in there!

[Anonymous]

Michelle,

I am so sorry – I know I promised to get back yesterday afternoon or evening but our life is crazy right now -eek! I think I committed myself to too many things. I apologize.

I was noticing that our Evans are close in age!

We also constantly thought that we were “almost there”… & then finally, we WERE there!

I tried to reintroduce turkey & failed. Also tried rice & failed. I haven’t tried sweet potatoes b/c when I’ve finally gotten baselines again I’ve wanted to try & introduce other foods instead. So far I’ve only been successfull w/ peaches.

As for the dx… initially we did 3 hemoccult tests w/ Ped GI & 3 w/ general ped. Eventually we were doing hemoccult tests @ home w/ every single poopy diaper (it was enough to drive a person crazy). Also, when he was 10wks old & I had been on strict TED for 5+ wks we did an upper endoscopy as well as a colonoscopy. Ped GI dx allergic colitis @ that time as well.

From my research & asking around he is too young for IgG testing b/c he hasn’t been exposed to hardly any foods to build up those antibodies to show up on the test. Also, there are so many false positives oftentimes when they have been exposed to a food a lot (ie; he would probably show up positive to something like pears or potatoes b/c of the amount I eat)… I have multiple friends who this happened to. If you want more info w/ the IgG Emily (b’s mom) did it w/ her dd @ 6mths old. Also Sheri (MFPIx2) knows a lot about it.

It wasn’t until we finally got a baseline for Evan that he started sleeping beautifully. Even now when a trial fails (& his diapers are disaster) his sleep is the first to go.

HTH – feel free to PM me if you want 🙂

[Author]

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