Concerned

[Anonymous]

Hi, I have posted a few times and don’t know what to do next. My 7 month old has had reflux since 2 weeks. She was on Axid until March 21st and then we switched to prevacid that day (15 mg), she is 16 lbs. Some of her symptoms are better (she is a silent refluxer), but she still has congestion all the time, takes an hour to take 4 to 5 ounces, chokes while sitting around, cannot really lay flat on her back, still sleeps in bouncy seat only.

Well,I talked to my pedi many times and told him about marcikids, but he will not up her dose, he said as long as she is not in a lot of pain, then to keep her on prevacid and she will out grow it. But…I feel like I’m losing it. I cannot leave the room for fear of her choking, it takes her a long time to clear it if I don’t help her. She is choking on acid I assume?

My family thinks I’m worrying too much and that she shouldn’t be on more meds. either, blah blah blah.

So…not sure what to do. Do any of you have a similar situation, where your pedi won’t up the dosage? I have not gone to a specialist, my husband doesn’t want them to put anything down her throat?!?

Also…she doesn’t babble at all, seems like she wants to talk, but it is like there is always something stuck in her throat, she will scream in delight, but no other sounds, she turned 7 months last week. Is this normal for a refluxer?Scuba492007-4-10 14:22:48

[hellbennt]

I would want a swallow study! tell your husband you NEED to see if she’s getting liquid into her lungs…

they don’t stick anything in the throat for a swallow study- just give something to drink at various consistancies and watch how it goes down/is swallowed…

I would DEMAND to go to a ped GI! tell your husband you can then discuss w/ the ped GI what you want or don’t want- I wouldn’t NOT see a ped GI just because of what s/he MIGHT want to do test-wise to your baby…

[Anonymous]

Hi there. Sorry to hear that you’re going through a hard time. If your little one is choking then I would certainly get a referral to a ped GI. There can be many causes for choking. For my daughter, sometimes she choked while feeding because she couldn’t swallow thin liquids well, other times she choked because she wouldn’t be able to clear a reflux episode.

If your daughter has congestion and chokes, then I would also want some testing to make sure that nothing is wrong. A swallowing study (aka a modified barium swallow) is a good test is there is choking while feeding. It can tell you if there is aspiration and other problems with the swallow that might be contributing to the long amount of time it takes to feed her. An upper GI is another test that will look to see if there are structural abnormalities along the GI tract leading to the reflux or the choking- which is pretty rare, especially given that she’s 7 months already. Neither of these tests are used to diagnose reflux. There are other tests that are very valuable as well- namely an endoscopy and pH probe, but given what you mentioned about testing, I won’t go into too much detail other than mentioning them.

About her meds- 15mg is quite a low dose. Hailey really didn’t get good relief until she got on 30mg of prevacid. Also are you giving it on an empty stomach and following up with the meal 30 minutes later? Our docs also wouldn’t up Hailey’s dose to the marci-kids dose, but I kept looking for new docs and specialists until we finally got her on a decent dose. If you tell us where you live, someone here might be able to recommend an aggressive doc to you who will give higher meds and take things more seriously.

You mention that she takes an hour to have 4-5 ounces of formula. What happens during that hour? How is she feeding and what signs does she have? Is she crying, choking, arching, pulling off, refusing, fussing, kicking… or just fooling around and kind of disinterested. What formula is she on?

Your peds comment about the medication is not uncomment, but I am going to disagree and say that feeding problems are a sign of uncontrolled reflux, and often reflux pain. If left uncontrolled, they can lead to longstanding problems and a feeding aversion. I am not telling you this to scare you, but in hopes that things can turn around for your daughter. We were told the exact same thing as you were by the doc we’d been seeing- that the meds were as high as they could go, that she’d outgrow the reflux, etc. But I knew that something wasn’t right and kept pushing for my daughter to get the right help. Unfortunately, by the time we got the right help, her feeding problems were so entrenched that they have been difficult to reverse, and have been so awful to deal with, making the reflux itself seem like a cake walk. Again, that’s not to scare you, just to show you how bad it can get if not dealt with properly. Your daughter might just outgrow it soon like they say, but there is also the possibility that she might not outgrow it as quickly as they think. My daughter is two and still hasn’t outgrown it, though it is much better than it used to be.

About your husband’s fears related to a GI, please don’t let that deter you from getting the help that your daughter needs. You, in the end, dictate the tests that will be performed, not your doctor. But with that in mind, testing if often the only way to really know what’s going on and to treat things properly. I think that as parents we are sometimes paralyzed by the fear because they are so little and helpless. I was scared before each procedure we had done, but none of them were even nearly as bad as I feared- the upper GI, swallowing evaluation, endoscopy- she came out of them all fine, and I’m so glad that we had them done. None of us want our babies to NEED testing, or to NEED higher medications. But the consequences of leaving the problem untreated are often worse.

Good luck. I hope that you can get some relief for your daughter.

[Anonymous]

Thank you for the information, I think I will see a specialist. She won’t let me hold her and feed her, we feed her in a chair and she will just drink and ounce and then push it out, I’ll have to let her play or something for 20 minutes and then give her 2 more ounces, etc. She had pnemonia when she was 3 1/2 months, so wondering if the reflux caused that and hoping she doesn’t get it again. She sneezes and is congested all day, but worse in the morning. She use to scream, arch, projectile, but was better on the med., and once we changed to soy.

I live in Charlotte, NC, so any referrals is appreciated. I do give the dose on an empty stomach and 30 minutes before a full meal. I split it in the morning and at night. Thanks for the input.

[hellbennt]

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

[Anonymous]

Hi “scuba”

I agree with everything said above. I also wanted to let you know it wasn’t until Alana was on 30mg that her reflux was truely controlled. If you are having no luck with your pead could you ask a family dr…that was who was willing to prescribe for Alana.

Maybe you could say to your pead “yes it is likely she will grow out of it eventually…but if you had reflux would you take meds so that you felt better whilst you had it”…!

YOu are mummy….trust your instincts….sometimes mummy’s have to override daddys (who are just there to be the “fun” parent anyway)

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