Posted By Posting
Oct 11, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Bottle Aversion, Nutramigen
Hello all! Well Im new here and let me tell you this site is A GODSEND! If I could just hear from one Mom who knows whats Im going through I would be sooo happy. A little about us- Hunter has never fed well. Diagnosed with silent reflux. Been hospitalised for 2 weeks with ng tube. Currently on Domperidone, Omeprizole, and Gavison- all full dosage for his weight. I was nt really sure if any of it was ever really working. He was quite colicky and that seems to be easing a bit (he is 12 weeks) BUt this week his eating has taken a drastic turn for the worst. I am a strong beleiver in breast feeding but always had an inclination that might be a problem. He never learned to breast feed well, partially ddue to tongue tie. I gave up breast feeding during his hospital stay as it was upsetting him too much and began the tiring job of exclusive pumping. This week I have started giving him a fw feeds of Infantrini (a high cal formula) because his eating is so bad. Now Im starting to think he might have a cows milk protein intolerance and since yesterday he is on 100% Nutramigen. Havent seen a difference yet but it has only been about 12 hours. Im still pumping in case he isnt allergic and I dont ant to dry up. Feeding is just a nightmare. Crying, refusal, playing with the teat, hours and hours. Some days are better than others but its generaly bad news. PLEASE, if anyone has any experience with any of the things Ive mentioned LET ME KNOW!! I would be so grateful. My husband and I have been put through our paces , and thank god we work well as a couple, because if we didnt I think we d be divorced by now!!
Oct 11, 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 and welcome! You will DEFINITELY hear from more than one mom on here (although weekends are a little slower...). Yup - I can say with confidence that we all know what you are going through, and it SUCKS. I'm really sorry and feel for both you and your baby.

My son is severely allergic to milk (amongst 9,567,353 other things), and he cannot even tolerate Nutramigen. However, when we switched from nursing and Similac to that particular formula, we still saw a difference. His round-the-clock screaming (and I mean ROUND THE CLOCK) diminished a bit within a day. He still had a lot of issues, but it was NOT as bad as it had been. However, we didn't see significant improvement until we switched to Neocate when he was about 16 weeks old. That said, most little ones can tolerate Nutramigen and Alimentum quite well with MPI. I suggest giving it a full week before you throw in the towel as far as Nutramigen goes. Then you might want to try Alimentum, which we tried next (worked a bit better for a while, but then his full-body rash and severe diarrhea returned). Many kids tolerate one better than the other.

As far as nursing goes, it could very well be that he is allergic to something other than milk. My son started screaming and getting BAD rashes three days after birth, but in our case, it wans't just milk that was causing the problems. Do you have any family history of allergies at all? For a kid to develop a food allergy, parents do NOT have to have them. Any type of allergy runs on the allergy gene. You could be allergic to bees or pollen ,and it could show up as a milk allergy in your child. If one parent has some type of allergy, the child has a 40 percent chance of developing some type. If both parents have an allergy, the child has a 60 percent chance.

Hope this helps a bit, and WELCOME!!

Oct 11, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
He isnt a big crier in the day time. Its just when feeding time comes he wants nothign to do with it, and as soon as the milk hits his mouth hes not a happy bunny. I could be wrong thinking its an allergy, it could just be severe aversion. But even so, I still dont know what to do :(
Oct 11, 2008
ethan's mom
Meridith, mom to Ethan born 4/23/08. Ethan was diagnosed with reflux at about 1 month. He has been on Zantac (unsuccessful) and Prevacid. He is currently taking 7.5 mg of Prevacid 2x per day, with good results. We also suspect MPI, though this hasn't been confirmed by a doctor yet.
Ethan is mostly breastfed, though we are doing one bottle of soy formula each day. We also do some homeade "solids' including, so far pears, avocado, sweet potato, and peaches.
Photobucket
I too am a strong believer in breast feeding, but fear that it is only makin ghtings worse for my son. We have been doing one bottle per day of Nutramigen, and nursing the rest of the time, which gives me the break I need to keep going with the breastfeeding. In addition, I stay away from milk products as much as I can, which makes each feeding go a little easier.

I don't really have suggestions, since we are still working on finding our solution, but I wanted to chime in and say that I can empathize. My husband is my champion, always telling me that its not my fault when feedings leave me in tears, which helps out a lot. Hopefully your hubby can find ways to help you out emotionally, so that you have the strength to keep going, while you are working out the answer for Hunter.

Oct 11, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I know how frustrating it can be when our little ones have trouble breastfeeding. I nursed my two oldest exclusively and had lots of milk to give Katie. She just wouldn't take it. She screamed at the sight of my nipple. I pumped for a long time but eventually it become so difficult we switched to Nutramigen exclusively. It is very emotional because you know you have this wonderful milk to give however our girl did much better after I made the switch.

Hang in there and keep trying as long as you can and feel good about what decision you make.

I am not familiar with the meds you mentioned but I know that so many of ours have done very well on Prevacid.

Oct 11, 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
Welcome! I'm sorry that you have to be here, but glad you found us. If you decide to continue with breastfeeding, I'd strongly suggest doing an elimination diet (if you aren't already). You can find it on the Dr. Sears site - or just put another post out there and some of the moms can help you. I was able to get by only pulling milk and greasy foods from my diet, but other bfing moms have had to pull much more. That being said, I was sad (although somewhat relieved) that my daughter did better on Nutramigen than she did bfing. I'd allow a couple of weeks before giving up on the Nutramigen to allow all the other formula to clear his system. Same advice if you decide to do the elimination diet - it takes a while for his system to get stabilized.

I think you'll find LOTS of moms on here with very similar issues, so hopefully you'll find them to be as much of a source of support and hope as they've been for me. We are a success story - at 14 months my daughter outgrew her reflux - except for the occasional episodes. Hang in there, there is hope.

Oct 12, 2008
ama
Mommy of Hunter born 07/16/08. Tongue tied at birth, never learned to bf well. Diagnosed with silent reflux at 5 weeks with barrium swallow. Fed on expressed breast milk. Currently on Gaviscon, Omeprizole (prilosec), Domperidone (Motilium)have yet to see medication have any effect on him. His biggest symptom is his distain of feeding time- he hates it. . Hospitalised for two weeks in September, fed through ng tube.
Thanks! Elimination diet and exclusive pumping- boy thats sucking every last bit of fun out of life. I dont know how long i could manage. The thing is, is that his only "allergic" symptom is the bottle aversion. Could he still be allergc if he doesnt get rashes or anything? Is this trial all for nothing? My freezer is almost full up of breast milk I dont knowif Ill ever use, and Im still pumping away....
Check with your
doctor first!