Posted By Posting
Oct 13, 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.
Advice needed
I will rty to keep this short. Due to the fact Hunter still feeds so bad after a good amount of time on his meds, the dietician suggested a month on Nutramigen to see if he ha s an allegy . I have been exclusively pumping and feeding breast milk up until this point . What are the chances the Nutramigen will have a positive effect? I dont want to dry up if ends up not having an allergy. Im not too keen on elimination diets ,but I will do it, and even so it takes a good two weeks to get all the milk protein out of your system. Im torn over this but grasping at straws at this point to get him to feed well. :(
Oct 13, 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!
When I was breastfeeding, we did a trial of alimentum (pretty much the same as nutram). Maggie did pretty well with it. We just wanted to have a formula on hand if some emergency happened. I think it's worth a shot. If it doesn't work, at least then you'll know. I'm a big advocate of breastfeeding, but in my opinion 1) it's not always best-unless you're really willing to commit to a bland diet and 2) I always wanted something in case of emergency. Those are both far fetched possibilities, so don't worry yourself. Chances are he'll do fine with the nutram. and if not...you can move to the next step :)
Oct 13, 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.
Why dont you continue to pump... that way you will have a supply built up and you wont dry out if he is able to go back to BM. What do they think he is allergic to??
Oct 13, 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.
They think its the cows milk protein. Our freezer is about 75% full up of b/m already! I guess I could donate it. But I dont think I have the strength to pump round the clock to keep my supply for the next month yet continue to give him this gross formula. I would probably end up caving in and feed him b/m . I can barely handle the to days we ve done already!
Oct 13, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
All I can say is that I wished I had just continued to pump and give Keira some Nutram in the interim while things were really rough for her. The Nutram worked really well for Keira and knowing what I know now I could have put her right back to bm w/out a problem. Personally I regret letting my supply dry out but that's just me. Now that's only my experience so please don't take it for anything else but that. I support women in either direction. I would think by the time you have the mp out of your system and Hunter has had the Nutram in his system for that time you would probably know if it's a MPI. By then you'll know if you can keep up w/ the elimination diet and all too. For Keira it didn't take long to see a difference but every kid is different, you know?
Oct 13, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Oh wow I guess I didn't read your post right...a month? Wow. Ok...scratch my post from before. I wonder if you could try and do the elimination diet and supplement w/ Nutram? I have a friend who's changing her diet and she's using formula and nursing just until she's got the milk proteins out of her system. Then she will go back to bm only.
Oct 13, 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.
When you guys say the Nutram worked well, did your LO start eating again??
Oct 13, 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.
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I can't speak from experience, but I think that you should try to do the Nut. trial, and then go back to breastfeeding following an elimination diet, if that is where your heart is. I've read success stories about women who have re-built their supply after it dropping drastically. I'd read, talk to a lactation consultant, etc. before I tried it, but from what I've read, you could pump minimally, once or twice a day, while you are doing the trial, then as you are finishing the trial, work toward increasing your supply back up, using herbs, more frequent pumping, etc.

This may also give you a chance to get going on an elimination diet when you aren't so exhausted from pumping around the clock. I've tried the elimination diet, and I was exhausted, but I imagine that you could handle it better if you could get adjusted to it.

We have used nut., and it has been successful, at least in giving me a break from difficult feeds. We have not had a refusal to eat problem, just trouble during feedings, so I can't say that he is eating more or anything.

Oct 13, 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! I think Im going to do more research and talk to som specialists before I make a decision. Does your LO have other MPI symptoms? Hunters only symptom is the reluctance to feed... thats what makes me suspect it might not be an MPI.....
Oct 13, 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.
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Ethan's only symptom of MPI, that I could discern anyway, was what we called "screaming gas". About 12 hours after I had eaten or drank something with milk, Ethan would have terrible screaming fits of gas. He was completely inconsolable, and just had to ride it out until it had passed. Other times he would be gassy, but it was not the same as this, so I knew something was up.

We go to our first GI appt this week, so we hopefully will have more ideas then. I think that some of the feeding troubles are reflux, and others may be the MPI, since I am not perfect at avoiding dairy. I am trying to evaluate the whole breastfeeding versus formula thing too, so I can understand where you are coming from.

Oct 13, 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.
I just wish I could be more decisive about which route to take, I just want to be %100 but I fear I never will.We are actually going to take him to a baby psycologist, SLT, and a specialist in London to work out why he doesnt like to feed when he is fully awake. I just keep going round and round in my head what it could be , hes on so much meds I just hope hes still not in pain. *sigh* the search continues!
Oct 13, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I was told the same thing, but the drs were never super optimistic about it working and I was very fearful of loosing my milk and him loosing the ability to nurse. We had major FTT issues at first and he had diarrhea every day for the first 4 months. I decided to jump head first into a very strict elimination diet as explained on the dr sears website. It was the best thing I have ever done for my little guy. My only regret is that I did not do it sooner. He was a new baby right away. He certainly still deals with the reflux and needs meds, but it is nothing like before. I would strongly suggest the diet. I would be happy to offer any advice/support. Just put my name and elimination diet in the thread title and I will be happy to reply. I am not on a whole lot these days as I am very busy, but I check in almost every day, just don't always post. You can also check out my blog to read about our experience and success! schiwartfamily.blogspot.com
Good luck
Oct 13, 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.... :(
I agree with Maggie's mom - it wouldn't hurt to have it on hand. Sebastian couldn't tolerate Nutramigen in the long run, but when we switched to it it was like night and day. I didn't really know about elimination diets when I stopped nursing, but from what I have learned, it wouldn't have helped us for long since he has problems with some of the things on there anyway. Honestly, if he seems uncomfortable and is possibly allergic, it doens't hurt to at least try Nutramigen - and can you pump while you try out the formula?
Oct 13, 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.... :(
Sebastian's milk allergy is very severe, and I tend to think that you would KNOW if Hunter had a milk allergy or intolerance. There would be at least one of these, I think - constant screaming, diarrhea, rash (face or full body), vomiting. It's kind of undeniable. But that doesn't mean Hunter doesn't have a problem with something else in your diet - we had that problem, too.
Oct 13, 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 wish that I could find a 100% answer, but I think that it is a puzzle and we keep finding different pieces, putting them into place, making an improvement, and searching for the next piece.

I'm glad that MollyBeth came onto this post. Her story is inspiring, and has had great results for Cooper, it seems.

I was feeding Ethan his bedtime bottle tonight and thought of something that might help. I'm not used to reading dates the way that you typed it, so I'm not sure if Hunter is 2 months or three months, but I know that at about 3 months, Ethan became distracted during feedings. I know that isn't the main thing that is going on with Hunter's feedings, but perhaps it is sometimes part of what is going on. We started to read to Ethan when he was about that age during his nighttime feeding. I discovered one night that he sucked down a 6 oz bottle while I was one the phone with my mom in record time, so I decided to try to talk while he was eating, and it works a lot of the time. There are still times when he just isn't willing to eat, but more often than not he sucks down the bottle while I read. Might be worth trying, if you haven't already.

Oct 14, 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 for all your advice guys!! Again, Im so glad Ive found this site as I have been feeling so alone going through this, you ladies are great! (my husband is supportive but he doesnt get as upset about it as I do - because he doesnt feed him all day!!) He was on the Nutram for 2.5 days and I didnt see much difference. I know thats not much time. Hunter will be three months on the 16th . (Ive been in the UK too long, thats 7/16/08 his birthday) I like the reading idea. Was at the GP today and he said Id know if he had an alergy as well. To be honest I dont think Id have the strength to do the elimination diet as well as exclusive pumping - one or the other but both is just too much. Right now I think Im going to continue with the pumping and giving two feeds of the high cal stuff a day becasue lately he is only doing about 2 oz a feed. I m not going to stress if he doesnt take the bottle and hopefully my clam and serenity ( yeah, right!) will rub off on him and he will feed like a dream!! Ha ha !
Check with your
doctor first!