Losing hope…

[Anonymous]

Hi – I am not sure where else to go at this point, but I am losing hope. My 14 month old has been through the wringer with silent reflux since he was 2 months old. He was also diagnosed with a swallowing problem, where his reflux and food/drinks goes down the wrong tubes, and causing him to have a chronic cough.

We thought his reflux was getting better, but lately it suddenly worsened. He even started the coughing again after meals and drinks. So, I’m not sure where to go from here. We are pretty much max’d on our dose of prevacid, which I recently increased. So, I don’t know how much more we can do medicinally. I just wanted to post here because I know you ladies have been through this with your LO’s, and am hoping you will be able to offer some advice. I am scared to death of the fundo…

Has anyone’s LO’s had the fundo done? Did it help? Is there anything else I should be doing now? Thanks!

[Anonymous]

Love your baby’s name!! Is Carter getting his molars? We noticed much bigger reflux flairs with the molars and eye teeth, but things calmed down again after those teeth came in.

I am sorry you have been dealing with this for so long! Neither of my boys required the fundo, but there are others on the board who did and I am sure they will chime in.

Hang in there!!!

Ann Marie

[Anonymous]

Thanks on the name! Great minds must think alike! Carter has already gotten his molars. They came in about 3 weeks ago, but the skin kind of grew over the top of one of them. So, he is still kind of teething on that one. He is also getting one bottom tooth (next to the middle two), and an eye tooth. The one next to the middle two is right below the surface just starting to poke through. The eye tooth is also just starting to poke through. So, I guess this could definitely have something to do with it.

How old was your LO when he grew out of it?

Also, thanks for your response!

[Anonymous]

Dylan was closer to 2, but Carter was closer to 1, so I think I just depends.

Hang in there! I know it sucks, but it also doesn’t hurt to get a 2nd opinion. Is there another GI you can see?

Happy Thanksgiving!!!

Ann Marie

[Anonymous]

Hi there. Sorry to hear that your son is still having problems. I have a few questions-

First, who diagnosed with a swallowing problem and what testing did they use to make the diagnosis. My dd used to cough and gag and sound like she was choking and sound all gurgly after drinking, but a swallowing assessment revealed that she wasn’t aspirating, so we were okay. There are some children who do aspirate liquids, and if your son is one of them then a feeding therapist (SLP) should do an evaluation to see what thickness of fluid he can tolerate.

I agree with Ann Marie, that Hailey’s reflux was always worse when she was teething, but also whenever she was fighting off any virus or sickness. We found that she needed a high dose of prevacid to help with the reflux, for whatever reason, it did lessen the gaggyness. What dose is your son on and how are you giving it?

I personally wouldn’t think fundo yet unless your doc feels it’s necessary, but that’s just my opinion. There’s a whole host of testing that should be done prior to getting to that point, and then it’s kind of a decision of weighing the drawbacks of the reflux vs. the drawbacks of the fundo. That’s just my opinion though. Kevieb’s daughter had a fundo a 10 months, I believe, and has done well with it. I’ve read about other children who haven’t done well with it. There’s some good reading on the topic, if you have to make that decision. My daughter is 2.5 and still refluxing and still on prevacid, and our ped GI does not feel that her situation warrants a fundo, so I’m thankful for that. Our GI has told us that most kids will outgrow it by age 3, and if that doesn’t happen, then it would be time to do additional testing to see what else is going on. But he also said that he doesn’t have a problem with her being on prevacid for up to 10 years, if she needs to be, as the studies suggest that it’s been proven safe for up to that long, and beyond that, that there just isn’t data to know.

If your son hasn’t had the swallowing study done yet, I’d consider it.

Good luck.

[Anonymous]

s&h’s mum wrote: Hi there. Sorry to hear that your son is still having problems. I have a few questions-

First, who diagnosed with a swallowing problem and what testing did they use to make the diagnosis. My dd used to cough and gag and sound like she was choking and sound all gurgly after drinking, but a swallowing assessment revealed that she wasn’t aspirating, so we were okay. There are some children who do aspirate liquids, and if your son is one of them then a feeding therapist (SLP) should do an evaluation to see what thickness of fluid he can tolerate.

I agree with Ann Marie, that Hailey’s reflux was always worse when she was teething, but also whenever she was fighting off any virus or sickness. We found that she needed a high dose of prevacid to help with the reflux, for whatever reason, it did lessen the gaggyness. What dose is your son on and how are you giving it?

I personally wouldn’t think fundo yet unless your doc feels it’s necessary, but that’s just my opinion. There’s a whole host of testing that should be done prior to getting to that point, and then it’s kind of a decision of weighing the drawbacks of the reflux vs. the drawbacks of the fundo. That’s just my opinion though. Kevieb’s daughter had a fundo a 10 months, I believe, and has done well with it. I’ve read about other children who haven’t done well with it. There’s some good reading on the topic, if you have to make that decision. My daughter is 2.5 and still refluxing and still on prevacid, and our ped GI does not feel that her situation warrants a fundo, so I’m thankful for that. Our GI has told us that most kids will outgrow it by age 3, and if that doesn’t happen, then it would be time to do additional testing to see what else is going on. But he also said that he doesn’t have a problem with her being on prevacid for up to 10 years, if she needs to be, as the studies suggest that it’s been proven safe for up to that long, and beyond that, that there just isn’t data to know.

If your son hasn’t had the swallowing study done yet, I’d consider it.

Good luck.

Hi – Thanks for your response. Let me give you a little history:

At 5 months, I noticed my son had a wet cough (after being on the prevacid for 3 months and coughing off and on). I took him to his ped, and they said he just had a cold. At 6 months, I took him again for the same reason. This continued until he was 8 months old, and I finally told them that I thought my son had an aspiration problem. The ped didn’t believe me, but referred me to a Ped GI Dr. They did a Swallow Study and confirmed that he was aspirating thin liquids and purees. So, since then we have been on Honey consistency simply thick. Carter also had an endoscopy and bronchoscopy to rule out any damage. Those tests came back normal. He also had an impedance study done at nine months, which showed no acid reflux, meaning that the prevacid was killing the acid. He did have some non-acidic reflux.

We had another Swallow Study done in Sept (12 months old at this time), which showed that he was not aspirating, but that he still penetrated, meaning that he had improved a lot since the last test, but was not completely out of the woods yet. AT that time and up until 2 weeks ago, I did not hear the wet cough. The simply thick and prevacid were doing the trick! Then, all of the sudden, two weeks ago, it started back up again. I have no idea why! Carter doesn’t seem to be in any pain, and I really don’t see the reflux worsening too much. So, I have no idea! We cannot do another swallow study until January, as they have to be at least 4 months apart, but I am sure we will be getting another one at that time. They also talked about repeating the Impedance Study at 18 months. I did talk to the Feeding Therapist, and she mentioned that the sound that we are hearing may just be liquid pooling in the back of his throat, where the “vallecula” is. She said that at 14 months, kids get better at sucking and can find ways to drink faster, and basically learn new things with their sippy’s. So, that may be all it is…. If so, it’s not a huge concern, but I just won’t know until they can run more tests.

Oh, and to answer your question about dosage, he is on approx. 13 mg prevacid solutabs 2x Daily. I just cut a little piece off, and throw it away twice a day. He was on 3/4 solutab twice a day until a week ago. At that time, I tried increasing him to the whole solutab twice a day, but he had horrible gas and stomach pains. So, I went down to 13 mg, which is still a little more than the 3/4 solutab. I usually just stick the tab in his mouth, and it dissolves.

Does your 2.5 year old still cough every once in awhile from the reflux? How does she sleep at night? Any coughing? Carter coughs maybe once a night in his sleep, and sleeps for about 11 hours straight.

Thanks for your help!
valkay182007-11-22 10:32:53

[Anonymous]

I’m really sorry to hear that your little guy has had such a rough go with the reflux. Hailey used to cough so much and sound so gurgly that I was shocked to hear that the SLP didn’t think she was aspirating. They listened to her chest with a stethoscope, said it was clear, and then refused to do the modified barium swallow. Protocol here is that you need the SLP to say it’s warranted. With Hailey’s feeding aversion/bottle aversion at the time it would have been impossible anyhow. But, the coughing, gagging, choking sounds persisted so we thickened ourself, and it helped a little bit, but still was a problem. Luckily, as she got older, around 15-18 months, I’d say, that really lessened. She was even able to starte to learn to drink from an open cup at around 18 months with water (daycare taught her) but still coughed, and they couldn’t understand why she coughed and gagged all the time. After a few months, probably around 20-22 months, it stopped. I can’t remember exactly when, but I think that her reflux probably improved somewhat and that made it easier for her overall. She still has reflux and is now only on 15mg prevacid before bed. Coughing really isn’t a big problem for her anymore unless she has a virus brewing, or a reflux flareup, then it’s out of control. But generally, she doesn’t sound congested or raspy anymore much at all. As for the sleeping, that’s always been a huge problem for her. Up until 2 years old, she was up much of the night tossing, refluxing, crying, thrashing around the bed so much that she’d fall out of a king size bed. The thrashing is a bit less now, but she’s still all over the place. As for hours straight, we have anywhere from 2-4 wakeups a night, but they’re brief and she puts herself back to sleep without much help from me. I really hope that your son outgrows things and that he doesn’t need the fundo. I know that when respiratory issues and aspiration are involved, it becomes more of a health concern. There’s another forum: http://www.parent-2-parent.com/forum and there’s a lot of people on that site that have children with aspiration, more severe reflux, or fundos. They may be able to help you. Good luck.

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