Posted By Posting
Oct 07, 2008
catherinesmom
Catherine, 24-weeker, released from NICU on Zantac. Soon had NG tube due to FTT and GERD. Increasing oral defensiveness, now 100% tube fed after 4mths at home. Currently on breastmilk only, and still puking all the time. Mom just started Dr. Sears Elimination Diet.
Stuck Between a Rock and a Hard Place
Let me introduce myself. I am the mother of two beautiful daughters. The first was not easy, but GERD wasn't one of her challenges. The second was a micropreemie, and everything is different with her. Because my DD is 100% tube fed, and I am still trying to BF, I am pumping, pumping, pumping. But, whether due to stress (now where would that come from???!?) or something else, I always fall short of enough BM for DD. Up to now, we have been raiding the frozen stock that I built up while DD was in the NICU, but that will be gone this week. We've had her on Alimentum in the past, mixed with BM, but I stopped giving her the formula over a month ago. Some of her symptoms seemed to improve somewhat after going to just BM. Then I started to eliminate some things from my diet, having been encouraged to do so by our feeding specialist. Chocolate went first, then dairy/cow's milk. When I switched to soy milk, it seemed that she got worse, but it's hard to say for sure, because we keep having to go back to the frozen supply. Anyway, I don't drink soy milk now, but there is so many hidden sources of soy products that I know she is still getting it in her diet. Plus, I worry that I am eating more of something else that she can't tolerate, such as peanuts or almonds, or whatever, as a replacement for the milk and chocolate I previously consumed. In addition to her worsened symptoms when I used soy milk, I suspect she is intolerant to soy and milk because of her maternal grandmother's issues with both milk and soy. But, as I said, I can't "prove" it because I haven't been able to keep up with her BM need with my pumping! I am still trying to boost up my BM output, but I know that I won't be able to get there this week. Maybe not ever, but I have to keep trying. So, my question is, as far as a supplement, which do you think would be preferable: Alimentum or goat milk? It would be maybe 4-8 ounces each day, depending upon how much ends up being vomitted. I know Alimentum is supposed to be "hypoallergenic", but I think that only applies to the milk protein in it. The manufacturer doesn't address the other components, such as the soy bean oil and corn maltodextrin. Our feeding specialist seems to think all the components are broken down so much that they shouldn't cause a problem, but I don't trust that. My DH does want to go back to Alimentum, since our insurance has covered it in the past, and we have some stashed away upstairs. Dr. Sears advocates supplementing BFing with goat milk. I have also heard goat milk has the potential for problems, such as too much fat and being so similar to cow milk that the goat milk proteins are rejected, just like the cow milk proteins. Have any of you been in a similar position? Is there another alternative that I haven't mentioned?
Oct 07, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Hi and welcome! Are you seeing a pedi GI? I think I'd ask her doctor before you move to goats milk at that young age. If she can't tolerate Alimentum, then you may want to consider Neocate which is amino based. Word of warning - it is expensive, but many babies on here have done MUCH better on it. I commend you for working so hard on breastfeeding - it's not easy and it's even harder with a refluxer. Is she on any reflux meds?
Oct 07, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
elecare and neocate seem to be the best but they are this and can be refluxed up easily but with less pain. you may want to ask your dr about thickeners (can you do that while tube feeding, tfmoms???) even if a baby is not truley "intolerant" or allergic to milk or soy proteins, they are reflux triggers and are also hard to digest. Since she more then likely still has a very immature digestive system i would stick to the easiest to digest things such as BM from elimination diet and neocate and elecare.

I tried the elimination diet for 5 months and it did not work for my dd but it worked for so many here that i would reccomend trying it. Also look at la leche league's website and they have tips to increase your BM supply and elimination diet tips as well. If you have WIC in your area you can call their lactation consultant and they have tips as well. you don't need to be low income for their help.

http://www.llli.org/
http://www.ilca.org/
http://www.fns.usda.gov/wic/

i would really see a GI before switching to goats milk, as i understand a child should be eating high amounts of protein and balanced diet for goats milk to be a good milk substitute b/c it is lower in vitamins and such. The rules may be different for tube feeders

you can also find a good pedi GI in you area from this website: http://www.naspghan.org/
good luck and welcome! :)
Oct 07, 2008
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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First Welcome! I def agree with pps about seeing a pedi GI if you aren't already. Also look into trying a PPI medication like Prevacid, Prilosec or Zegerid. You are right to goat's milk being similar (protein wise) to cows milk. Abby was/in MSPI and was on Nutramigen till 4mos and then Neocate from then on and it worked so well for her. Then we transition her from Neocate to goats milk around 14/15months. She did very well on that. She doesn't drink much now of it b/c we got rid of her bottle though. We tried cows milk after her 2nd birthday but it constipated her. I do know a few moms (in Canada) that have used goats milk on infants but I know that they had to add fat to it. But I am sure that most drs are against this here in the US. Abby's old GI freaked when I told her we were switching to this instead of cows milk at 1yr. Well we ditched that dr and she does amazing on it!

I would say that the elimination diet does work well for some. But it is def a challenge. Like others have said, I would probably give Neocate or Elecare a try. Give it a good two weeks or more b/c it can take awhile for the proteins to get out of their system.

Oct 07, 2008
catherinesmom
Catherine, 24-weeker, released from NICU on Zantac. Soon had NG tube due to FTT and GERD. Increasing oral defensiveness, now 100% tube fed after 4mths at home. Currently on breastmilk only, and still puking all the time. Mom just started Dr. Sears Elimination Diet.
Thank you for your prompt responses!

Regarding meds, DD is on Zantac. I'm not convinced it's really helping enough. We tried Prevacid for a short time - solu-tabs, which didn't work well for us in terms of delivery, because they clogged the feeding tube and were difficult to get into DD's mouth for oral intake. I thought Prevacid helped, but my DH didn't, so we dropped it and went back to Zantac.

Thickeners won't work with a feeding tube, at least not one as small as we are using. If we move to a G-tube, that might become an option.

In regard to my supply issues, I've been working through the various tips for the last 3-4 weeks. I personally think it is either purely stress, or my oral contraceptive, or both. I'm visiting my OB later this week to discuss a different OC.

Oct 07, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
oh yeah birth control can diminish supply. screaming babies are a good birth control lol it worked for us, when emily stopped being in so much pain... that's when audrey was conceived lol DON"T choose neuva ring. i am one of 5 people i know who conceived on neuva ring. but then again neuva ring might be a good option b/c you can b/f on it.
Oct 07, 2008
catherinesmom
Catherine, 24-weeker, released from NICU on Zantac. Soon had NG tube due to FTT and GERD. Increasing oral defensiveness, now 100% tube fed after 4mths at home. Currently on breastmilk only, and still puking all the time. Mom just started Dr. Sears Elimination Diet.

We have visited a pedi GI only once, in consultation about a G-tube placement. I personally did not that Dr. so I don't plan to go back, except maybe about the G-tube. Otherwise, the general pediatrician and feeding specialist are the ones trying to help us through this mess.

Regarding the Alimentum formula, perhaps you can alleviate my concerns about the corn and soy content. I keep hearing that it's just the proteins that cause allergy trouble, not the fats or carbs. But that doesn't make sense to me. Why not all parts of the allergenic food?

Okay, so if you're not a nutritionist, you probably can't answer that. But if you have had success using the casein hydrolysate formulas (Alimentum, Pregestimil, Nutramigen) or the amino acid ones (Elecare, Neocate) with your children, even if they are soy intolerant (all of those formulas use soy oil for all or part of the fat content), I guess I will stop to rethink my concerns.

BTW: Here's an excellent summary chart for the various formulas:

http://depts.washington.edu/growing/Nourish/Ftable.htm
Oct 07, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Hi! I can't add anything that hasn't been said. I just wanted to say "welcome" and I do totally agree...I'd try alimentum. Then once your frozen stash is gone, you'll know exactly what she is getting. I have heard that goat's milk is very similar to cow's milk. My dd did ok with alimentum as a supplement from time to time.
Oct 07, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
HI and welcome! I know the hardships of bfing a reflux baby.... still struggle with it myself! I am too stubborn to stop though! I am so sorry to hear about your DD... a miracle she is though! I am no help as Joslyn is not a spitter. But I know you will get some good advice here!
Oct 07, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Does DD have a known allergy or sensitivity to corn. It is in most everything and hard to avoid, so if it is not causing a problem, that is great.

I hope you find a formula that works. While every child is different, I am told that most children who are allergic to soy are also allergic to cows milk and visa versa.

When Meggy was little her doc. told us about Human Milk Fortifier meant for breast feeding moms. It adds calories and nutrition as far as I can remember.It is pricey and we could only find it on the internet.

Meggy went through every over the counter formula. She would do okay for up to a week at a time on most over counter formulas. She would seem to be doing great and then cut her intake suddenly and start with the vomiting.

Elemental formulas were even worse for her.

She is 17 months old and currently using rice milk fortified with 1 tablespoon sunflower oil and 2 tablespoons coconut milk. We also add 1/3 teaspoon of sugar per every 7 ounces.We are only doing this until her Ultracare for kids arrives. It is completely free of corn, soy, dairy, gluten but specifically says not to be a replacement for infant formula. It is also not broken down and not elemental. It is not nutritionally complete so you would have to consult a nutritionist to see if it could be fortified.

Meggy also takes table foods.

Glad u found us. Hope something here is helpful.

Oct 07, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
from what i researched alimentum has less corn and more sugar in it then Nutramigen does, kids who do well on(or like) alimentium often don't like nutrmigen and vise versa. My dd did very well on nutramigen b/c it is sugar (sucrose) free, but she is also not corn intolerant.

The way that the food is broken down inside the body is how it triggers an allergic response or not. carbs (sugars and starches) are broken down by enzymes. i found this link http://answers.yahoo.com/question/index?qid=20060823025021AAMXsIM but the way the proteins are broken down either illicites, or not, an immune response; whether an allergic one or intolerance. here's a couple more links: http://kidshealth.org/parent/medical/allergies/milk_allergy.html
http://www.gmo-compass.org/eng/safety/human_health/43.allergies_causes_them.html
i think kidswithfoodallergies.com can also help you make sense of this as well.

it pretty much comes down to how digestion and immune system interact. hopefully that's not too confusing :)
Oct 07, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there, and welcome! I'm really sorry to hear about the problems you and your little one are having. Sebastian wasn't a preemie, but we have had our own share of feeding issues. Sebastian has so many allergies (the ones that we know of are in my signature...more are sure to show up at the next test...they always do) that breastfeeding was a nightmare. He started screaming/ having a horrendous face rash three days post birth. He was also very allergic to Alimentum event hough it was broken down. Nothing helped him until we started on Neocate at the end of January. Can you try that or Elecare? I have heard time and time again from our allergist(s) that many (though not all) kids who have problems with cow's milk also cannot tolerate goat's milk...though not all. That said, I'd suggets trying one of the two elemental formulas and talking to a GI or allergist...

Hope this helps!!!

Oct 07, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Welcome! so sorry that you have had so many issues with your little one already. Neocate and Elecare are the best from what I know, but if they don't work, nutramigen works too. Our gold was nutramigen. I can't offer much more than the others. I read in your siggy that your daughter is puking still. Most of this is likely due to her NG tube. It holds the LES open so that way it can't close off to attempt to prevent the reflux. since she has had the NG for 4 months already at home and she is still 100% tube fed, you might want to consider a g-tube. It relieves a lot of the stress of having to shove the NG down the nose, getting it pulled out and it's less traumatic for the baby. Particularly if you think the tube feeding will be long term. Getting Q on the g-tube was possibly the best thing for her. But it was really scary at first and it does require a lot of care. Gotta go... WELCoME!!!! -Sarah
Oct 08, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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Hi there! IMO (and it's my opinion ONLY) I would not try goat's milk for someone that young who already has known GI issues....I would go for the "super" hypo formulas, elecare or neocate. My preemie had pumped bm until 6 mos old when the GI decided she was MSPI and put her on Elecare. I was pumping too, like you, so my whole freezer supply was "tainted" with milk and soy and I could not keep up with pumping. He did not even want us to try nutram or alimentum, and insurance usually covers elecare or neocate for tube feeders.

As for the soy oil and corn in the formulas, my dd had a major problem with soy and a minor problem with corn and she tolerated it so i think it is worth a try. *hugs* There are other preemie mamas here but i think yours might be the only micropreemie....mine was a 31 weeker and we are still trying to get thru the remainder of the GI issues. She was a multiple-daily-projectile-vomiter until about 12 mos, when it starting getting less and less frequent although it still happens occasionally!

I'm sure you are already doing all the tips for reflux babies. The tucker wedge/sling helped us for night time and for when I just needed to set her down.

Oct 08, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
Sorry - in a hurry. If you are using old breastmilk too, you have no idea what you were eating at that time, so the formula trial is "clouded" by that. 92% of kids allergic to cows milk WILL react to goats milk -- the proteins are too similar. For great food allergy/breastfeeding/formula advice, check out kidswithfoodallergies.org. It has been a lifesaver for me, because my kids have multiple food allergies in addition to reflux.
Oct 10, 2008
catherinesmom
Catherine, 24-weeker, released from NICU on Zantac. Soon had NG tube due to FTT and GERD. Increasing oral defensiveness, now 100% tube fed after 4mths at home. Currently on breastmilk only, and still puking all the time. Mom just started Dr. Sears Elimination Diet.
Thanks again for the warm welcome and advice!

Yes, I have concluded that goat milk would not be suitable. I hadn't done any research on it before posting here, but now I've read both sides of the story. Pros and cons. It was my mother who suggested it when I was fussing about the soy oil content of just about every formula on the market. Now I have some logical reasons to not do this! You know how it is when you have to turn down advice from your own parents!

We pulled out some Alimentum the other night, the ready-mix type, so I wouldn't have to open a new can of the powder and have it ruined. Well, Catherine puked all night long with that in her feedings. Tried again the next night, too, to finish up the 8 oz can. More puking. But none last night when we just gave her straight breast milk.

I know the breast milk from the freezer is "tainted", but it still seems to bother Catherine less than the formula.

But then again, it could have been that getting her Synagis shot and flu vaccine on the same day as we tried the Alimentum was the REAL reason for the extra puking.

The feeding specialist was reluctant to conclude that it was the formula causing the emesis, but I'm still leaning that way. Maybe we'll try some formula again next week. I found a couple more bags of frozen milk that I didn't know were in there.

I want to try one of the elemental formulas. I think the casein hydrolysate is still too close to the real milk thing, and is bothering her. I'll leave a message with her pediatrician and see what comes of that.

Check with your
doctor first!