12 month old not able to drink milk, needs AR

[Laura56]

My daughter was diagnosed with reflux at 2 weeks old and started on Zantac from 2 weeks until 5 months. At 2 months old I started her on Enfamil AR and it was amazing! She still vomited but she didn't scream! She vomited regularly until she was 8 months and several times a week until 9 months. She saw a GI dr at 7 weeks old and was graduated from the GI dr at 5 months old. I was told she would be mostly over reflux by 9 months and completely over it by 12 months.. she did not get the memo! I tried to switch her to regular Enfamil at a little over 10 months and she projectile vomited the entire 4 oz I gave her! So went back to AR. I have been trying milk and almond milk since 12 months.. she turned a year on 10/29. She has been refluxing.. gagged if she drinks it laying reclined and almost vomits but thankfully does not. But I can hear her refluxing! I can feel it in her chest. So I went back to AR.. again. Now I am giving her little amounts of almond milk or milk but she doesn't drink much.. probably cause it hurts! But I am pretty much back on AR as I was before she started on milk. She has a VERY strong gag reflex too. If something hits the back of her throat she vomits. And this happens at least once a week. I have made an appt with her GI dr again but of course they are so backed up that I can't get in to see them until Dec 3rd which was a cancellation cause they are booking into Jan! Is she ever going to outgrow this? If she hasn't outgrown it by 12 months is she going to have this forever? Am I ever going to be able to get her off of AR? Is she going to be on formula for the rest of her life lol? Should I only give her the AR until I see the GI dr? HELP!!! Thankfully this has never affected her weight! She is 22 lbs 12 oz at her 12 month appt! So she's a chunker. Any advice would be greatly appreciated. Thank you for anything you can help with. This is just so frustrating!

[jojo]

In all honnesty, i am surprised by this category. When i first joined, i think it was for kids 3 and up who did not outgrow it. My doc always said dont expect if before 2 years- 18 months if you are lucky. I was told 90 percent outgrow it by 12 months, 99 percent by two and 1 percent dont outgrow it. Not sure if this still applies

Any milk/food intolerance will make them reflux. My newborn, who does not seem to have reflux (cross fingers) spits up a storm if i have anything with milk. When not- he is fine

About the gag- dont assume it will just go away. Densensitization is important- also important to get them to eat different textures. You might want to get a couple of visits with an OT to help with that. I used a chew chew with maiya- and it really helped her (at the age of 3). Her gag is much better now.


Is she taking any solids?

[Katey]

Hi and welcome to IRD! I am so sorry you little one is having such a hard time. When you try something new, make sure you do one thing at a time. since you are doing both, milk and almond milk you can't know which one is causing the problem.

It may just be the thickness that she needs, you could add a little rice cereal to see if that helps. AR is milk based, so she should not have a problem with milk, but often going from formula to whole milk can cause some initial problems, especially with refluxers. I would start by adding small amonts of milk to the AR and trying to slowly increase it, but as it gets thinner, you will probably have to add the cearal to get it to the same consitancy as the AR.

It sounds like she might have some swallowing issues, the GI may order a swallow study to get a better idea of why she is gagging. If she keeps having problems with the milk, I would just stick with the formula unitl you see the GI, it will not hurt her to be on it a little longer and it may save you a lot of stress.

[Laura56]

Thank you for the replies. Her GI dr told us that she would mostly outgrow it by 9 months and completely outgrow it by 12 months. I know it's not a milk allergy/intolerance cause she can eat cheese, yogurt, her formula is milk based. The ready to feed of AR is too thin for her initially. She is able to drink it but she gags on it at first. She has done that with thin liquids since she was born.. she would gag because the liquid would reflux on her.
About her gag.. I have the same thing. I have a very strong gag reflex and have since I can remember. And I have texture issues. If I am expecting a certain texture and it is not that texture I will gag on it and have to spit it out immediately. I can't eat certain foods cause of the texture of them.. no tomatoes, just got over my mushroom texture issue, etc. I can't brush my tongue without gagging every single time I brush my teeth. But I have no problems eating most foods and don't throw up at all when I'm eating. I do plan on discussing this with her GI dr though. It bothers me that she throws up if something hits her gag reflex wrong. Tonight she was eating oyster crackers and DID NOT like them.. they immediately got pushed out of her mouth and she gagged a little. She was expecting the bread that she was eating and since it was different she responded!
I started giving her almond milk for about 2 weeks before I gave her cow's milk. She responded the same way to both of them. I did not notice it as much with the almond milk cause I didn't put the almond milk in a bottle. After she turned a year and I took her off her formula and she was sick and I needed her to drink and gave her the almond milk in the bottle I realized she responds the same way to both.
I am sticking with the formula until the appt based on everyone's response. Sure it's more expensive but it's worth it that she actually drinks stuff.
She is on table food now mixed with some baby food still. I'll normally give her a stage 2 frui with most meals. But each meal she gets table food. She eats the gerber graduates with no problems.. unless it is something she doesn't like! Then she will gag on it and almost or actually vomit. If it's not what she was expecting she will gag.. and if I try again and she knows what to expect she does fine with it unless she doesn't like it. For dinner tonight we went to a restaurant and she ate penne pasta, chicken, bread, and broccoli. And she did fine except for the oyster crackers.. they made her gag.

[Katey]

That is interesting that you two have such similar issues. I am sure it is something that you have been able to get used to over time. Good luck with the GI. Make sure to update us on the apt.

[Monkeysmom]

Is it possible that her responses to the changes in milk are from her hypersensitive gag reflex and not necessarily digestive? I was going to say that Christopher would gag on a piece of orzo until he was 13 months old and then it stopped almost instantly. However, since you said you still have a sensitive gag reflex I'm thinking this may not be the case. is it possible she's just panicking from the change in flavor and consistency? My thought would be start with something...anything you know that works (maybe the R formula) and graduate her to milk. Mix the two an ounce or half an ounce at a time so she slowly adapts to the change in flavor and doesn't panic. For example, if you mix a 6 ounce bottle of formula, the first few few days, give her 5-5.5 ounces formula mixed with just half an ounce to an ounce of milk. Even if she gags, give it a couple of days to see if she relaxes and adapts to the flavor. If she does, add a bit more milk and a bt less formula. At the sme time, I would not completely abandon the idea that she might need meds. It could be a combination of things. Good luck!

[Miori]

My daughter did not transition easily either so I just took it real slow. We kept her on formula til 14 months. So don't feel like you have to rush to milk just b/c she is 12 mths

[Laura56]

I realized I never updated here. We went to the GI dr. He didn't seem concerned about her still vomiting and said "it's just her reflux, she'll grow out of it." He said she is gaining weight fine so it's fine. He was concerned about her constipation that he said was from the AR. He told us to immediately get off the AR even if she refluxes and he had me pick up miralax to give her 1 tbsp every night to regulate her. I just don't feel like he listened to me at all! He kept saying it's JUST REFLUX. Which it may be.. but how do you know that? Plus she vomits and has constipation... so both sides of the GI tract weren't working. She got so constipated that she was crying EVERY SINGLE DAY from trying to poop. It got so stressful for both of us that I am afraid if she doesn't poop right away in the morning... always thinking that she's gonna constipate again. But the miralax is AWESOME!! I love that stuff.. it makes it so easy for her to go.

She is currently able to take a bottle of whole milk without very minimal problems and still gets about 6 oz of AR at night. The GI dr said the constipation is coming from the AR but she's been on it since she was 2 months old and didn't constipate until a few months ago. She's able to drink the thin liquids although I can still hear her reflux at times. She still gags on things. Thankfully not as often. If she's sick she vomits way more! She was vomiting her entire meal up at least once a day.

She also has lung problems. Every time she gets any type of illness it goes to her lungs. She has to take albuterol, an oral steriod, and an inhaled steroid and an antibiotic. So I took her to a pedi pulmonologist. He does not agree with the GI dr and said it very well may be just reflux but he can't make that assumption without getting tests done. So he is sending her for a barium swallow test. He's also sending her for a sweat test and allergy and immunology testing. So at least we'll have more ideas about what is going on with her. I'm hoping it's just reflux and she'll just grow out of this and grow out of the asthma.

[Katey]

Thanks for the update! "Just reflux' can cause a lot of problems and there is not guarantee that she will out grow it. My son is 4 and still has reflux and probably will, to some extent, for the rest of his life. I am glad the pulmonologist is taking things more seriously and looking into it further.

[semiferger]

Keep trying, honestly. My little boy wouldn't drink cows milk for a period of time, and there are other ways to get them calcium, like cheese and yogurt, so just offer those until she'll drink it again. On the other hand, it might be more than a picky phase, so if she does drink it and seems strangely behaved afterward, or something like that, call the doctor and see if they can maybe do a milk allergy test.