Home › Forums › Feeding Issues › MSPI › Failing Neocate?
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March 23, 2011 at 2:59 pm #68040AnonymousInactive
My son has MSPI, and seems to also be intolerant to eggs and nuts… and probably other stuff too. My diet was so restricted, that i lost 65 lbs while breastfeeding.
He had mucous and blood in his stool, but i was always able to make it go away by changing my diet…. until i couldn’t figure it out one day. I started an elimination diet when he was 2 months old… and when he turned 5 monts we saw the GI specialist. They immediately jumped on neocate. I was tired of the diet and ready to see a change, so we tried it for a week.The first few days were awful. He didn’t want it at all. He vomited a lot and got reflux so bad that he was hoarse. His doc reccomended and increased dose of his pepcid. It worked… no more hoarseness or vomiting, but he just doens’t seem like himself. He’s almost too quiet, too tired. Not as interested in faces. Also i find that the neocate makes his poops impossible to decipher (neocate black and curdy). He only poops once a day now, but its really gooey squishy, and i’m pretty sure there is mucous in there because its so stringy.When i called the ped they said that we would try neocate junior because it does not have soy oil in it. To be honest i regret this whole deal, and wish i had just figured it out on my own with the breastfeeding.Anyone have any insight on neocate, and what a stool is supposed to look like, and whether or not his is normal?March 23, 2011 at 9:20 pm #68044hellbenntKeymasterhugs mama!
any chance to get back to breastfeeding or has it been too long now?IF it is not a possibility, please do not be hard on yourself!be gentle!you’re doing the best you can w/ what you’ve got!not sure about what to tell you…I sent an email to a neocate person…hopefully she will respond soonMarch 23, 2011 at 10:32 pm #68045AnonymousInactiveThanks a lot. Not it hasn’t been too long. In fact, we started breastfeeding again tonight because i found some obvious blood in the last diaper. I just don’t understand how “hypoallergenic” can be so hard on his system. I’m doing TED right now… but i’m worried about my own heath, doing this long term. Hard to know how this will go. i’m still getting my supply back, and who knows if this will even improve the bleeding. I was looking for the “easy fix”, but apparently that doesn’t exist.
March 24, 2011 at 5:12 pm #68048AnonymousInactiveHi there!
I’m the “Neocate person”, thanks Laura for the message. I’m sorry I didn’t get the message sooner, my whole house has been down for the count with a stomach bug, luckily the baby hasn’t gotten it *fingers crossed*, otherwise I would have responded sooner.A few things in your original post that really stuck out to me, first how old is the baby now? And is he strictly on Neocate? Nothing else, meaning you haven’t introduced solids? How long has he been on Neocate, imporovement can take some time for his gut to heal and all the offending proteins to leave his system. The color “blackish” is normal for Neocate babies becuase it is a low residue formula, low residue formulas lower the level of bacteria in the gut leading to reduced breakdown of bile, more bile in the stool causes the darker color.I would also suggest not going to Neocate Junior as Junior is designed to children 1 to 10. Although soy oil is listed in the ingredients there is NO soy protein (or corn for that matter) in the product,the proteins have been extracted and highly refined making it suitable for babies with allergies. And the proteins are what these babies are reacting to. Neocate and EleCare truly are the only formula options for highly sensitive babies.As far as breastfeeding goes, I am currently exclusively breastfeeding my MFPI baby. He is almost 8 months old and his symptoms started at 7 wks, which included mucuos and blood in his stool. I did a TED diet and it took a LONG time for him to be symptom free, over 4 wks. If you are able to try BFing again it’s worth a shot, but you’re right it’s not easy on the mom. I’m currently taking extra calcium supplements along with regular vitamins. And I’ve found that he reacts to dairy, soy, tomato, and egg, so I avoid all of those and nuts just to be safe.As far as the reflux goes, I can’t offer much help unfortunately. My middle son had reflux but it was easily controlled with Zantac. Laura, do you have any suggestions?I’m sorry you’re having so much trouble, I’d like to be able to help out more if I can. Let me know how you’re doingMarch 24, 2011 at 7:10 pm #68049hellbenntKeymasterhang in there!!
I have a lot of info to help you…if you have pepcid, you can get back to it, at a proper dose- how much does baby weigh? you can find pepcid dose here:MSPI ‘Main’ page:
best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2
Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126
More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395
Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576
Great anne post: https://www.infantreflux.org/forum/forum_posts.asp?TID=9242Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993
Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638
Another Sheri explanation- intolerance/allergy post:
https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442
Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815
(sue again, replying to gina- breastfeeding info to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1March 24, 2011 at 8:27 pm #68051AnonymousInactiveThanks for the info… now i feel kinda bad for not leaving him on the neocate longer… But he just seemed worse. I did not wean him on, we went cold turkey. He had mild reflux in the past, but the transition threw him into full gear. Not necessarily vomiting, but hoarse voice and grunting.
His GI increased his does to 1 ml which she said is a GI dose. I’d have to look at the label to tell you how many miligrams. That did help alot, but its masking his reactions too, making it hard for me to tell how he’s reacting.I left him on Neocate for a week… and he never drank enough. 2 oz at a time. Occasionally 4 at night. He usually totaled 20 oz in a day, and i felt that wasn’t enough. (he’s 5 1/2 months old) Then yesterday he started acting strange. He was quiet… not crying, not talking, not playing with toys, not looking me in the face, and he slept all the time. I saw bloody flecks and mucous in his next diaper. I started bfing him after that, but i’ve only been on TED for 3 days. (but already dairy,soy, egg, and nut free for months)His diaper tonight was FULL of mucous, but no blood (at least obvious blood). I’m wondering if i made a mistake. I wish it didn’t take everything so long to show results!My issue with the neocate poop, is that i found it hard to tell if there was mucous. I know its normal for it to be black, but that color hides a lot.March 24, 2011 at 8:31 pm #68052AnonymousInactiveOh yes, and the gi recomended solids. I questioned that a lot! I tried giving him rice cereal in the beginning of the week, but he wasn’t interested, so we were on stricly neocate for the rest.
March 24, 2011 at 8:40 pm #68053hellbenntKeymasterthe links should help! I know there’s a lot! but read the erin sticky and the misconceptions about elemental formulas…
March 24, 2011 at 9:13 pm #68054AnonymousInactiveI can definitely relate that it’s very fustrating that it takes so long to see results. It’s torture! But try to be patient. I would say pick one, either BFing or Neocate, and stick to it for at least two weeks, but longer if you can. The mucuos you saw with the first week on Neocate was likely still just his body adjusting. In my experience, my LO took 4 wks to be completely mucuos free. That, however, was likely due to the fact that the first two weeks were trial and error, and I didn’t do TED until about the 3rd week.
I think going cold turkey with you LO was probably hard as well, for the both of you! I would say if you decide to use formula transition as best you can, mix 1 oz Neocate with 4 oz breastmilk, and then slowly up it until your %100 formula.As far as the solids go, I know they say you can start solids at 4 months, but I’ve read that babies with intolerances/allergies it’s actually better to wait, so I waited until 6 months and then I started with low allergen fruits and veggies. And then when he was 7 months I tried rice and oatmeal infant cereal and he reacted BAD to the oatmeal!!! So we’re off grains completely and he’s only eating a small amount of safe fruits and veggies. Grains can be really hard for their guts to digest. And it may be best to limit the number of new things your trying.I’m not sure why your LO was acting sleepy, lethargic, etc. did you ask the doctor about that? Are there side effects to any of the reflux meds?March 24, 2011 at 9:30 pm #68055AnonymousInactiveThe Erin stories were really helpful… but the idea of him possibly taking issue with things in the TED diet, have me terrified. I’ve only been on TED for 3 days. I’ve already lost 65 lbs on a partial elimination diet. (now fast on my way to 70) Some of it was pregnancy weight, but my prepregnancy clothes are falling off. My milk seems fine so far though. I really don’t know how long i can continue healthfully though.
Neocate would be a great thing ifA. He would drink it without screamingB. He would drink enough of itC. I could actually tell if there was blood or mucous in the poo (easy with bf poo)I feel really torn on what i should be doing. I’m going to continue with bfing at least for a little while and see if the stool resolves. Switching back and forth isn’t going to do him any good. If it gets worse, i might try to get him back on neocate. I feel like pulling out my hair right now. This is making me crazy!March 24, 2011 at 10:06 pm #68056AnonymousInactiveI know it’s stressful! Either way I’m sure it’ll work out, you’re doing the best you can.
As far as TED goes, I was strict only for the first few weeks until I got a baseline where he had no blood, mucous, ezcema, etc. Then I started adding things in fairly quickly. I’m not sure if that was the right thing to do but if he didn’t react I kept eating. I think the big thing is to try adding good fats to your diet. Olive oil has become my best friend! My LO fortunately does not have a problem with potatoes, so I eat white and sweet potatoes like they’re going out of style!!! I actually got one recipe off the TED forum here, using white potatoes and olive oil, yum! I also am able to eat meat fine. I started with turkey, mainly turkey burgers, but now I eat chicken, pork, and beef with no problem. If you’re a vegetarian it may be a little more difficult to get your protein sources, but I’ve found sunflower butter. Sunflower seeds could potentially be an allergen but my LO is fine with it. My guy is also fine with wheat, so I am able to eat dairy/soy free pasta and bread. It’s all about finding foods you can eat, enjoy, and live off while still helping your baby grow and thrive. My LO was 18 lbs back at his 6 month check up so he’s doing just fine!! Just be sure you’ve eliminated all potential allergens, especially hidden dairy and soy. But if you’re following TED that shouldn’t be a problem.If you decide to use Neocate that’s fine too, just tranisition him. I think it may be easier for him to adjust if you slowly add it like I suggested in the previous post.The biggest thing is to give it time. His little insides need time to rest and heal before you’ll see a difference. I know that doesn’t seem helpful in the moment, hang in there!!March 25, 2011 at 2:47 pm #68058AnonymousInactiveGoing to try to stay breastfeeding till i get to a baseline. His poo today was a more normal color (orange), but was LOADED with mucous. It was really gross. No diarrhea though. Unfortunaley on day 4 of the diet, i am down 3 more lbs. I’m actually enjoying frying squash and potatoes in olive oil, forgot how tastey they can be, and i’m getting creative with how to fix them. Hopefully the weight loss will level off.
Not making enough milk either. Having to supplement quite a bit. When i pump at work, i’m only getting 1 ounce per side. I used to get 3- 4March 25, 2011 at 5:22 pm #68062hellbenntKeymasterfrom the erin posts, there should be info about ‘baseline’ and how to add more foods in…the mucous can take quite a while to go…she mentions buying hemocult stips so you can see if there’s occult (hidden) blood in the stools- you might want to do this and do the TED ‘just’ for two weeks and then try adding things in, like avocado, which is a good fat…
also with the TED you can have ground free range (organic) turkey & lamb, so you could cook that w/ a lot of oil and some salt & pepper (I can’t imagine baby reacting to a pinch of pepper? I haven’t heard of it…I have heard of cinnamon and I could imagine the ‘leafy’ spices like Italian spices might be a nuisance, but salt & a teeny bit of pepper should be fine…)It’s pretty unusual for baby to react to TED foods, but the most common is rice, so if you find after the two weeks you aren’t where you think you should be you could cut out the rice and after a few days (not an entire two weeks!) you could try adding in something new like avocado or something else that you feel might be ‘safe.’There’s a TED Forum and recipes, you can even make some rice crispie treats using rice syrup! I found (and others too!) that it helps to focus on what you CAN eat rather than what you cannot…maybe after the two weeks if you find that you’re tolerating everything just fine then you can try adding in oats- this is supposed to help boost your supply…erin writes how to keep your supply up- a certain amount of calories & fats & LOTS of WATER.you can do this!March 25, 2011 at 5:25 pm #68063hellbenntKeymasterMarch 29, 2011 at 11:39 am #68072AnonymousInactiveHi again! Just back to update. I failed miserably at the TED diet. I lost a pound a day and my milk completely dried up. It’s sad, but at least i’m not stuck with a choice. Now i know he needs formula. We’re back on Neocate and he seems to be tolerating it better already. Still having mucous, but i know that takes time. Reflux is still not great, but i’m going to ask his doctor about putting him on a PPI.
Strange thing is, after breaking the diet, i gained 2 lbs overnight and my milk came back in abundence. Guess my body REALLY needed someting more.Thanks for your help, this forum is great. -
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