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Nov 24, 2010
dechri
New here - 6 mnth old on Neocate....solids/Alimentum, other questions
Hi All, What a great board! I have a few questions I will try and get out without writing a book. DD1 had no issues, was BF 3 years. DD2 was a severe but happy spitter, no allergies, BF 2 years and took Prevacid for 12 months, self resolved. DD3 is 6 months. By 4 weeks she was crying in pain 16-20 hrs/day. I did a TED, cycling foods for 2 months, with no real help. During that time we tried Alimentum for 48 hrs, was a miracle, then she seems to get a bit bothered again. We ended up on Neocate which has been by far the best for her. We also learned that some of the meds she was on bothered her, so we still have no idea if she really reacted to the ALimentum or not. Despite being on Prevacid and Zantac, her reflux is still bad. If she eats more than 2oz it pours out her nose, she is chronically chest and sinus congested, she only sleeps upright on me, which is taking a toll. Our GI Dr has kind of washed his hands of us and we just go back to check in in 2 months. After 3 months of this current med/Neocate combo, her endoscopy showed no damage. And we are shoveling enough down her to get weight gain. Although it is making her reflux really bad. The GI Dr is saying, she is damaged, she is gaining, she'll grow out of it. But let me say, it is reallllly bad. I asked him about thickening the formula and he said not to because it will digest slower and make it worse. He also said dont try and solids for that same reason. But because the Neocate is so thin and just flows right out of her, I am up every 2-3 hours with her eeek food down her. So my brain storming is....we were denied Neocate coverage despite a letter of necessity from PEd GI, letter of nec from ped and a letter from a Ped/LC/Allergy specialist documenting my extensive TEDs in an effort to BF. Since we never really had a solid trial of Alimentum, and Neocate is reallly pricey....would we be out of line to try a slow transition to that? Or do we stay the course with Neocate and try to start some solids in an effort for things to sit down her longer? She is not FTT. SHe did lose a lb at one point, but her inability to eat much quantity is more a function of being to irritated by the backflow of the Neocate. She is 98% for height, and depsite dropping from 99% to 64% in weight from birth till now, she IS currently gaining steadily. Any advice? I left this msg for the GI this morning, but we'll get the brush off. Would you try something different? And if so, would your first step be Neocate to Alimentum transition, or solids in addition to the Neocate? Thanks so much for any feedback!
Nov 24, 2010
dcd
Has your GI ever mentioned anything about motility issues/delayed gastric emptying? That's just the first thing that popped into my mind when reading that she can't eat more than 2 oz at a time without spitting up/it pouring out of her nose...
Nov 24, 2010
bellysmom
Hi dechri im new to this place also. was agreeing with dcd that a DES is a good idea. Also I think its time for a new GI. It sounds that they dont have time for you because she is on the "charts" A good size baby doesn't = no reflux. Isabeela was on thickened feeds since 8 weeks. We used rice as it was the best suited for her. We did put it in a bottle but you could try with spoon. Would try honey thicknees at first and if that works step down to nectar and vice versa. You have to go with your gut instinct. I would avoid using oatmeal because the binding effect it can have along with the neocate. I would stick to one formula bacause it can be heard to figure out the culprit. Also you mentioned it came out of her nose. Sounds like you have a good PEd maybe they can get u a swallow study for aspiration. thickening can help to eliminate this also.
Nov 24, 2010
dcd
I agree it's time for a new GI, I meant to say that before. Also, only my opinion, but I would stick with the Neocate for now since you say it suits her. It sounds like she is still having unresolved issues and switching formulas when she's on one that works well will only make matters worse. I would focus on trying to get the vomiting/reflux under control. How are you administering the Prevacid and Zantac? If they are given too closely together they can cancel each other out. Also, the Prevacid must be administered on an empty stomach, 1 hr to 30 mins before a meal. (You probably know that, but my pedi never told me.)

Thickened feeds may help but I would explore the delayed gastric emptying route a bit and see if that is a contributing factor.

ps. I can sympathize...our insurance just denied our second appeal to cover the Neocate too. :(

Nov 24, 2010
dechri
Thank you for the prompt replies. Our testing history is this: I mentioned DGE to the GI. He said all babies, esp with reflux, have some level of DGE. Ordered an Upper GI. Took 10 minutes, they deemed her normal. The GI Dr told me that it would have shown if she had serious DGE. I guess I thought that a delayed emptying test involved rechecking after a short wait. But her added Erythromycin to her med regimine at that time, to "help her reflux". It caused her great gut issues and didn't seemed to help much of anything. I pushed the DGE questioning and he said that Eryth was what they would give for it, and again noted that all babies with reflux have it. After we got her gaining again and her endoscopy, his nursed called to say "her edoscopy was normal, the Dr says continue the Neocate and meds and that any fussiness is either colic or need for sleep. Follow-up in 2 months". I am pretty exhausted at this point (I'm sure everyone has been there). This is the only close Ped GI...so hard taking everyone off work, juggling other kids, getting there...I got kicked around when asking for another GI in that practice, etc, etc. Regarding med timing....Prev in morning and Zantac at night. No one had every told me about Prevacid 30-60 min before food! Because she eats small amounts, I feed her often. SO this is good to know and something I will plan to do. When we met with the GI in Aug he agreed she needed a swallow study. The first opening was Jan 28th, 2011. I called every other place in the area and all referred me back there. (DO I sound defeated? lol). Her swallow seems decently normal, but her spitting always comes out her nose, and she sometimes aspirates it, but not WHILE she is eating, if that makes sense. I'm as a cross road as far as just "riding it out" for awhile or pushing pushing pushing. My DH is kind of beaten and is not the best advocate right now, though very rational. He kind of just wants a breather from chasing it. Note: I am now not working and home with her all day, sitting up with her all night, not him. ;) The GI Dr said we have done all the tests there are. This is the end of the road. That she has moderate reflux and we need to just make sure she gains weight. (He is not up with her either, lol). This is kid 3, and 2 had bad reflux (like at 6 weeks they were sure she had pyloric stenosis it was so bad). And she is not normal. Maybe her esophagus is not torn to bits and she is no FTT. But the fact that after 2 ounces she seems filled to the brim and spends the next hours puking it up, out her nose, inhaling it, just to repeat every couple hours....not normal. Sounds like she has a chronic cold. Doesn't sleep. And not like my 2nd who was a typical mild relfux agitated sleeper....like I don't sleep but 30 min stretches off and on every night. I've told all of this to the Dr. A few new thoughts/questions.... 1) Do we keep on with the swallow study, even though her actual swallow seems okay, and the nose flow/aspiration is from the actual spit up? 2) How SHOULD a 6 month old's feeding habits look, when they have reflux? My 2nd was BF-ed, so i just kept her eating, no idea how much at a time, and she was huge. But she never throw up out her nose of aspirated it. 3) GI Dr called back today and said stay on Neocate but we can trial solids. I bought that rice cereal (the easy on the tummy brand, dont remember the name, but have read it on this board all over). Would I be off base to try and thicken her bottle a little bit to see if that helps it stay down? She seems hungry a lot. LIke she wants to eat more. And she will sometimes get down 4oz, but she just gets SO miserable with it spewing out everywhere. I ride that line of getting her enough at time that she isnt hungry but not enough that it pour out of her. If we try thickening, do I use a same slow flow nipple? Thanks SO much for the help. It is nice to know people have done this and lived to fight another day. It is taking a toll on the family for sure.
Nov 24, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
hello! My LO has severe gerd and mspi. He would projectile vomit out of his nose after he ate (sometimes up to 4 hours after he ate) I would deffinatly try thickening the neocate with rice because it is extremely thin. I have never heard of a doctor saying NOT to give rice for a AR baby because it will make it worse. Sometimes doctors think that if a baby with AR or GERD is gaining, its not that bad, but they can be soooo wrong! Have you checked to make sure that they medication doases are going along with her weight gain? I just had to adjust my LO's Prevacid because of him gaining 2 lbs. My G.I. doctor tells me that solids may help with the AR but there is a chance it will make things worse. Im giving my LO rice cereal 2x a day (along with what he gets in his bottles) and once he hits 6 months im going to start him on avacado.
Nov 25, 2010
dechri
I gave her a few bites of rice cereal yesterday and it reaked havoc. I tried again today and same. It seems to hurt her stomach and her reflux seems much worse. When we were chasing allergies the Drs ended up saying they didn't think she was breaking down any proteins period. But would this still be the case months later? I would like to try thickening her bottles, but I am wondering if something other than rice cereal may be her best bet due to her inability to seem to handle food.
Check with your
doctor first!