AnonymousInactive
Wow, thanks so much all three of you for answering so quickly! the ped gi called last night and after I faxed him 18 pages of the MARCI kids info and he’d read it, he said okay to try a third dose– said he’d never done it before but was willing to try– and also said he’d never heard of the Mylanta buffer trick but he was willing to try. I guess I was too scared to ask for a all that AND the monster increase in dosage. He had her on about 10 mg per day split two times, and she’s roughly 5kg. This is way lower than Marci-kids recommended dose for her size, which is closer to 25-30 mg per day. The MARCI kids dose calculator had Norah at 7-9 mg per DOSE three times a day. So, I’m thinking that I’ll give this a few days and then lobby for a higher dose all around. What’s happening is that she’s MUCH happier, able to eat so much better….I am really shocked at how mch more she’s eating already….and she’s able to just “be” and not fuss and scream. But in the mornings and at night, she’ll fall asleep an then 30-45 mins later is waking with acid and bubbles at her mouth and fussing and this continues on and on until she’s exhausted and we crash. you know the story. So, that seems like breakthrough acid and I guess with a higher dose it shouldn’t happen?
I never dealt with feeding aversion with lucas, he could have breastfed 24 hours a day (until he was five I bet!) but with this one I noticed that it seemed that she could eat in small amounts and then be done. It never really occurred to me (even after reading all the info on here about folks with aversions) that this could happen. I also attributed a lot it to overactive letdown, whcih I’ve been having troubles with. Interestingly, it seems that she able to tolerate nursing much better with the zegerid– and the letdown issues must still be there. Maybe they are a much smaller part of the picture than I imagined. The last day or so I notice her eating so much more and much more comfortably during her feedings. Everyone has also commented whenever we go anywhere with her that she’s so small. She was gaining a ounce a day for the most part, but the last three weeks had gained only a pound, so less than an ounce a day. I think after seeing her eat so much better now– that we were possibly headed down that road of aversions as well. yikes.
So, based on what you guys are saying, I’m going on continue to give the mylanta buffer, and add the afternoon dose today (I’m so excited about this) and then ask for higher dosages all around in the next few days if things don’t get better with the breakthrough acid incidents.
Thanks again so much!
AnonymousInactive
We were taking prevacid and zantac and we were told that my daughter was allergic to dairy. I was breastfeeding so I removed dairy from my diet. I hated our pediatrician so I found someone new and she in turn referred us to a new GI. The GI said my daughter was not allergic to dairy so I could start eating it as soon as I wanted. Additionally she said she did not know why the previous GI was giving us both. Apparently one reduces acid and the other blocks it. She increased our dosage of the prevacid and had us eliminate the zantac. The next morning our daughter woke up and was smiling. It was the first time she wasn’t fussy and crying or screaming since she was born. You may want a second and 3rd opinion.
The lactation specialist at the hospital recommened the new pediatrician to us and we are so pleased with her. My daughter is 18 months now and has outgrown the reflux and colic. She too cried for at least 12 hours per day. Good luck to you – it does get better!
AnonymousInactive
Damn, Firefox just ate my very long post..
Background:
Exclusively breastfed baby is three months old.. has GERD, laryngomalacia, was level 3 and labial tongue tied and is EXTREMELY gassy.
Every 2-3 hours after a meal he writhes in gas pain. During daytime the frequent feedings (every two hours) keeps in under control, but at night, he thrashes his head around and cries in his sleep while trying to pass gas.
I’m not getting any sleep and my baby is in severe pain..
My question is if the gas pain is a direct result of the excess air swallowing caused by the laryngomalacia (also dx with dysphagia) or if it could be related to my diet?
I have seen some mucus in stools and he has red around his bottom.
I have been on Total elimination diet for 6 days now and no improvement (have been off soy and dairy for about 15 days).
Any insights would be so appreciated, I’m completely emotionally and mentally exhausted!!
AnonymousInactive
Hello there,
You might have read in the introductions that I am a mom of a three month old boy with reflux. He was diagnosed when he was a couple of weeks old due to weight issues. Ronan was put on Zantac and because he would not breastfeed, he has been fed expressed milk. He always spat up a lot, but otherwise did well. So well, the doctor took him off Zantac 6 or so weeks ago. Over the course of those weeks, Ronan’s reflux has gotten very bad. Besides constantly throwing up, he coughs, has hiccups and now does not want to eat very much. He has started screaming during feedings and when burped. he was always a great sleeper, but now that has changed too. I am going to my family doctor on Thursday and would love some advice as to what I need to ask her.
Thanks!
Rachel
AnonymousInactive
me too, i’m still doing the breastfeeding but supplementing with 1-2 bottle of soy formula at night.
the best!
my daughter almost 7 month and a whooping 20lbs (after soooo many feeding strike).
ChloeMommy2008-11-16 13:45:48
AnonymousInactive
Here’s what my friend Angela in Raleigh had to say about her ped gi experience:
“As for our Ped GI doc, we went to Dr. Berman at Duke. The Duke Ped GIs are the best around, but we had to wait 5 months (of hell) until our first appointment. Even once we were “in”, we still had to wait weeks for follow-up visits. I’m sure they prioritize kids who aren’t thriving though. I liked Dr. Berman, but he really just helped us rule out big things. I had already been dealing with it for so long I kind of “diagnosed” it myself and he mostly agreed. I’m not sure how supportive he would be with the breastfeeding. The Ped GIs at UNC are supposed to be okay, but not as great as Duke. My regular ped said the guys at Duke were worth the wait. I just read this week in the paper that the UNC ped specialists just opened up a clinic at Rex Hospital in Raleigh, so that may save some driving to Chapel Hill if she sees them. Please pass this along to the mom poster – you can give her my email address as well.”
Her email address: angela.alford@gmail.com
Her daughter was a lot like my son, gained weight well for a refluxer, looked like a butterball, and couldn’t sleep a wink- ended up on prevacid, probiotics, and specialized diet. Angela (the mother) did not continue breastfeeding with all the feeding issues….she already had another older child and decided she would go the formula route. I can’t remember which one she used. Anyway, she might not have had the breastfeeding conversation because of that, so I thought i would let you know that. She’s VERY thorough in terms of her reading and research into the topic, and pretty good judging people in my opinion. At least you have some sort of info on somebody, it’s better than nothing.
AnonymousInactive
I had an idea…. maybe someone at MARCI-kids with Univ of Missouri is connected to or knows of a doc at Duke or UNC? It’s worth a try, since MARCI-kids seems to have their house in order in regards to reflux. Just a thought.
You probably already know about this site, it’s an excellent resource but just in case: http://www.marci-kids.com
AnonymousInactive
Finn’s mom: We are near Long Beach in Lakewood. Our ped gi is in Torrance, just south of LA. A pretty far drive for you!
AnonymousInactive
Hi,
I’m sorry, I didn’t realize you were already doing all these dietary things already… I don’t think I’ve read any of your other posts– I have a newborn with reflux myself and have been only reading/responding to the posts that really sound familiar to things I’ve been through where my two cents might help.
I have a friend in Raliegh and I’ve emailed her to find out if her dd want to a ped gi or not. I think I remember that their ped did a lot of her care, but then she went to Duke (?) maybe, to do some testing when she was around 18 mos old. I’ll post as soon as I hear from her.
Also, what is your name? If you go to the settings section, then click on profile or edit profile, it will allow you to put your name, the baby’s name and birthday and medications or problems. That way we can remember each time we see your post a bit about you.
AnonymousInactive
here’s what my cousin said….
“It can take 2-6 months to completely resolve the bleeding and from all my professional sources here that is OK! We “found” the blood at a little after 2 months and by 6 months he was clean. It takes a while to heal their little systems–especially at the cellular level. And my pediatrician said as long as it is not spoonfuls small trace amounts is fine–and with these kids they can even have “spotting” from time to time. When they get older –like Taylor is now, the blood is generally not eh main symptom—it switches over to things like crying, not sleeping well, excema, vomiting, diarrhea. I took several hemocult strips into the GI doc at 10 months and they were all negative –even on some strips that contained a food that he did not respond well to. She said he was likely over that part of his life—YEAH! So please pass along to keep on nursing because all the docs here agree that if no conflicting parent/child allergies are involved, breast milk is still the best!”
She & her docs are in Richmond, VA
AnonymousInactive
Thanks mamas!!!
There are lots of great resources here regarding breast feeding.
I’m going on 7 months now! I’m giving my dd fortified expressed breast milk since her daily intake is very low. She stopped nursing around 6-8 weeks due to reflux, and I introduced the bottle. She still has a hard time drinking from a bottle, but she absolutely will not nurse anymore!
But I have been determined to continue pumping for her sake. I feel like a cow but just trying to do what’s best for my baby. 
I’ve felt like stopping a few times, but all this info helps me persevere!
Thanks ladies!
AnonymousInactive
I don’t know if this helps at all but the lactation consultant was very helpful in finding out what was bothering Eli. Eli actually broke out in hives and she helped more than the dr did.
AnonymousInactive
Thanks everyone. It REALLY helps to know we’re not alone. I’m going to keep breastfeeding because I fully believe it’s best for him. I’m on day 10 of TED (5 weeks of being dairy/soy/peanut free). Hopefully we will see some results soon. I emailed two of our favorite NICU nurses to see if they have suggestions for a ped GI. I will also talk with our pediatrician and if she can’t see eye to eye with us on the breastfeeding issue, we will look for a new one.
Anne – if you have a rec for a ped GI in the Triangle area, I would love to get it. I looked through the posts here and found only one recommendation for a doctor in Winston-Salem (close to 2 hours away). I’m sure with Duke and UNC in the area we must have some competent and understanding doctors!
Good for you. That must be very time consuming on your part. You are giving your dd the best start to life possible. Also, don’t beat yourself up either if, for some reason, you can’t pump anymore. 
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