Reflux nonresponsive to Prevacid, Zantac and Prilosec

By mammamia3 Thursday, June 18, 2009

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My son, 7, has been dealing with reflux for at least last six months. He was diagnosed with relux when he was two with a barium swallow. It either got better or went away completely with treatment on Zantac at that time. Now it's back and the meds. mentioned above have done nothing to help. Sometimes the relux is the typical sour digested stuff and at other times it can be a whole undigested bit of food from a meal 4 hours ago. We are on week 4 of Prevacid 30 mg, after having unsuccessfully tried a Prilosec at 15 mg, which was not effective. I just feel so bad for him, I don't feed him spicy food or tomatoes, no caffeine and very little to any chocolate. Yet it seems it doesn't matter what he eats, he will be tasting it again anyways, ham and cheese sandwhiches, mac and cheese, cereal, watermelon, cantelope, you name it,, he refluxes it. Thank goodness he is not loosing weight but his beath is so often sour throughout the day and many times during school he just swallows the reflux instead of spitting it out.

I am just wondering what should be expected next? Finally have gotten a Ped. Gi consult soon, and am expecting tests. How common are hiatal hernias in kids? Could he have EE, or a motility issue? Any insights or thoughts as to what might come next would be greatly appreciated for this frustrated mom Thanks.

Comments (68) | Add comment

Jan Gambino, Health Guide

6/19/09 10:01am

Hello! Oh how frustrating for both of you! Since you are going to see a GI soon, take some time to keep a journal for a few days or a few weeks. Be sure to note when and what he is eating as well as other symptoms such as burping, belching, throat clearing and tummy aches. This will help the doctor figure out the best approach.

In addition, be sure to give him the medication on an empty stomach 30 minutes before a meal. This helps the medication work properly.

Let us know what you find out from the GI doctor.

Jan Gambino

The Reflux Mom

www.refluxmom.com

mammmia4

6/20/09 1:35pm

Thanks, will do! I have been giving all meds on an empty stomach, at least an hour before he eats. Will let you know how it goes at the GI, am going this Monday so I hope for some plan on what to do next!! Also, this is mammamia3, but had to change my member info because I couldn't get logged in with the mia3 info for whatever reason..

Jan Gambino, Health Guide

6/21/09 8:46am

Ok, give us an update after the GI appt. I will be thinking about you! Jan

mammmia4

6/23/09 9:06am

Ok, The Ped. GI thinks that his story may be consistent with a type of stretching out of the intestines from not elimating on cue. Then the food might back up and not be able to exit in correct method. An X ray was done yesterday so we will have to wait and see if that shows up or not. If that's it, it's an easy fix of stool softener for a while, that would be awesome to have an easy fix but we'll see. I saw the film and didn't see any thing like I would expect, but then again I am no radiologist! He said they'd call they get the films. Will let you know when I know more.

mammmia4

6/25/09 9:56am

OK, so how longg should it take for me to hear results of the abdominal xray, done on Monday??? Today is Thursday and I am starting to become inpatient?

Stephanie, Health Guide

6/23/09 11:01pm

My daughter and I (and my Mom) all have issues with reflux and chronic constipation. For us it seems to be an issue of not moving things along our systems very well. Hopefully, your doc is right that most of this is coming from large bowel issues. Fixing the lower end should definitely make the upper end better. But, it may take a while to get everything back into working order. For my daughter, it took a while to figure out the best med for her chronic constipation as well as the meds for her reflux.

I didn't have major issues until last year and when I did I just started with the same meds my daughter took and they seemed to work right away.

Good Luck!! -- Stephanie

mammmia4

6/25/09 1:32pm

Thanks, can I ask how your daughter's diagnosis came about?? Still waiting here for word on an abd. xray done on Monday.

Stephanie, Health Guide

6/25/09 2:16pm

Katya was diagnosed as a baby. We gleefully added solids to her diet at 3.5 months hoping this would help her reflux and projectile vomiting. For most babies this thickens things up and makes it so that they can keep things down. Unfortunately, for Katya this created sludge which was too hard for her to move along her system. So, on top of the reflux she now had the plumbing backed up which only worsened the reflux. She was eventually at the point of only having a bowel movement once a week and only then with a suppository. When she finally went it was adult size, painful and bloody due to the size/hardness. (sorry to be so graphic but I'm hoping it helps).

So, once we got her on meds for her reflux and on the Milk of Magnesia, everything leveled out and she was much better. She then took MoM from the time she was 9 months until we finally got her off of it at 4.

Depending on the result of the x-ray they may want to try medication to make things work. If the meds work that's part of the diagnostic tool box. The other possibility would be an upper or lower GI study to look at the bowels and or stomach.

Good Luck - Keep us posted when you hear back about the x-ray.

mammmia4

6/26/09 9:45am

Thanks for the expanation...I am still waiting results, If a Dr. Promises you they will call before the week is over, and haven't called yet, and you have no experience with the dr. and it's not life or death, would you call and see, or try to be patient and wait through the weekend? Agh.

mammmia4

6/29/09 10:57am

ok, Havent' heard much about the xray other than it's normal.....But am giving Miralax anyways....Suppose it is constipation.....How long would it require to be on the Miralax for it to stop the reflux? In other words, how long on your meds did it take for the reflux to stop?? The GI said to discontinue the Prevacid since it's not helping at all, so right now am in the dark and just waiting to hear more and wondering how long it would take to work IF it is constipation???

Thanks :)

Stephanie, Health Guide

6/29/09 12:33pm

I'm really curious about this whole thing for you. The x-ray is normal. The Prevacid isn't helping and as far as you know he poops normally enough. I'm wondering why the doctor thinks it's constipation.

As for the meds. In general it takes a full two weeks to see improvement from any of the meds. How long was he on Prevacid? Ddi you see any improvement at all? If he has irritation in his esophagus due to the acid it takes a couple of weeks for that to improve. But, even if the cause is constipation I'm curious as to why the Prevacid wouldn't help.

As for the other posters comments on yeast. My kids also take acidophilus for yeast and it helps them as well but despite the treatment for yeast they still have reflux issues. I think yeast can be a significant problem and can sometimes be "the" problem but often times it is just one piece of the puzzle or not a component at all.

I hope you get some more answers. When are you going back to GI?

mammmia4

6/29/09 12:49pm

Me too! He was on Prevacid 30 mg for a month and before that 15mg Prevacid for 2 weeks, before that it was Prilosec 40 mg for a month and before that 20mg. of Prilosec. Before that, it was Zantac with no avail either.....

I think the Dr. thinks constipation because he was hoping for the easiest fix, and had asked him if it sometimes hurts when he poos, which he said yes to. It had been a long day, we'd traveled 4 hrs and he had already sat thru two other drs. appts. for his older brother,then he endured "embarrasing questions" about poop and gas....all of these led to him answering what he thought the Dr. wanted to hear, I guess. So I really don't have "official" word on the xray from the dr.. just his secretary who said he hadn't commented on it as of Friday. And that I should hear more today, which I haven't yet, and that I may want to give him Miralax. So he's had three days of it, and a bowel movement every day, which has gotten progressively looser since starting the Miralax.....He is still refluxing same amount as he was before and hasn't seen any improvement despite being borderline diahrea.

So I wait. and wait :) I don't want to be a pest with the dr. this is not life threatening, thank goodness. But how long do I wait again to actually find anything out? I had hopes of getting this whole thing figured out before Sept. If he is borderline diarrhea, would you continue the miralax just so you can say you've done it and it didn't help the reflux? I know you don't want to tell me what to do, but what would you do if this was you???

So thanks for listening, and if I ever hear anything from the GI I will let you know, I guess if he doesn't call by this Thurs I will try to call again...

I have no other appt made, I am kinda left in the dark....

Stephanie, Health Guide

6/29/09 2:54pm

I hate waiting for doctors to call back as well. We all know the squeaky wheel gets the grease but at the same time we also all know no one likes a pest.

If I were in your shoes I would do exactly what you are doing. Follow the docs orders but if he gets too bad I'd call back and say he now has diarrhea and reflux. It will be less of a bother I think if you are reporting back on how things are going with the treatment. Even with the loose stools but continued reflux you have good reason to call back and report on that. I do agree about not hearing by Thursday to definitely call back but with the holiday weekend you may want to make it Wednesday since a lot of places are making Friday a holiday.

Yes, I imagine it's very hard to be asked those questions. It's one thing when I was answering them for my baby, I can't imagine a pre-teen boy having to talk about it. Well, if he's anything like the pre-teen boys in my house that's all he talks about but of course not in reference to himself :)

So, the Prevacid/Prilosec certainly had plenty of time to do the trick. I'm thinking that he is likely in for further testing such as an upper GI to see what's going on. Problem is at this point is that once things are moving along if he's not getting any relief from the reflux he's going to add the misery of going too often. It might be hard to get him to be honest - you may need to coach him into being as honest as possible because he's likely to very quickly figure out what he needs to say in order to get out of as much testing or more meds as possible.

mammmia4

6/29/09 3:20pm

Thank you! I hadn't even thought to try to coach him into honesty, he was so bashful, never seen him like that! I will have to try to do that though....

And thank you for your reply, I think Weds. sounds like a good day to call back. It bugs me that they promise you to get back in touch with you by a certain time and they they don't do it. I might cut his Miralax half to what he was getting, but I will continue so I can report back that he is still refluxing whilst on the miralax is doing it's magic.

Thanks again will let you know when I ever find anything out. But I do agree there should be some more diagnostic things going on. There had been talk of Reglan by the Ped. but I really would like to know if he needs it and if all of this reflux has damaged his esophagus first.

Have a nice holiday weekend if I haven't updated by then!

mammmia4

6/30/09 8:10am

GI called last night and the xray showed significant stool in the intestines, so we are doing 1 1/2 caps of miralax three times a day for two days to induce diarrhea, followeded by3 days of 1 caps two times a day a then 1 cap a day maintenance. With any luck at all his reflux will go away when we get things moving, I hope so....I am to call them Thurs or Mon to follow up...When I asked about when the reflux might go away, I was told we could talk about that when I call back, so I don't know when they expect it should stop, or if they will want to scope his esophogus or not....I hope this is the miracle cause of his reflux, it is believe it or not the best cause of reflux he could have with the "easiest" fix, not easy to deal with this, but much better than having to give him reglan, so here's hoping.......(strangely enough, I never thougt he was constipated)

mammmia4

7/ 3/09 1:09pm

Hi,

Can you remember how long it took for the reflux to clear once the constipation cleared up??? Thanks!

Stephanie, Health Guide

7/ 3/09 9:52pm

We had both reflux and constipation and had to treat for both. In general though for me personally once things are moving along my reflux is much less of an issue almost immediately.

mammmia4

7/ 4/09 8:44am

Thanks, hes been moving now for almost a week, but we're still waiting for the reflux to subside. Still like 10 times a day, at least into the mouth and other times just half way up his esophagus from what he's been telling me.... I am to call GI on Monday to Follow up with them so I guess I will see what they have to say...thanks again....

Stephanie, Health Guide

7/ 4/09 6:34pm

So now I'm wondering if he possibly needs both the reflux meds and the constipation meds. That is how Katya was and how I am. If I treat one but not the other I get no where. I need to treat both in order to get relief. Since you've stopped the reflux meds did the reflux get worse or is it still the same? I'm wondering if the reflux meds couldn't help because he was stopped up. This would be a good thing to ask his GI doc.....

Good Luck and Happy 4th!

Stephanie

mammmia4

7/11/09 6:25am

Ok, Here's what he is willing to try for two to three weeks,a very low dose of eythromycin as a motility agent three times a day. The ped. Gi said if that doesn't do the trick then he may consider more studies..... I am so thankful that he did not jump right to Reglan, his nurse said he HATES that stuff and so it looks as though my son may not have to take it (fingers crossed).... I see by some of the papers this GI has written that he is a bit conservative with testing etc, and will investigate the simpler causes first...if the shoe fits.....The nurse called me back and told me the pharmacy can't get that drug, so now I wait til Monday to see what the solution is now, apparently it is on nationwide backorder......Have a great weekend.....

Jan Gambino, Health Guide

7/11/09 7:31am

Hello! Thanks for the update. I have heard of some issues obtaining Erythromycin. My understanding is there are other ways to obtain it. The pharmacy can call the manufacturer for information. If there has been a change and it is no longer available, let me know. I called the manufacturer last winter when parents started telling me it was hard to get.

Testing for GI problems may or may not help with the treatment plan. The GI doctor needs to decide if he can try a few weeks of medication as a "test" to see if the symptoms improve or if he needs to do an actual test.

Good luck!

Jan Gambino

The Reflux Mom

www.refluxmom.com

mammmia4

7/11/09 10:23am

thanks for the info on the med.... I will let you know what the nurse says about their ability to get it on Mon....She said she would have to try "other ways" whatever that means, so I will let you know.... I don't mind doing these "trials" of meds, as long as it is nothing that would cause harm, which so far it's not...PPI, H2, Miralax, and so we go....

Stephanie, Health Guide

7/11/09 10:33pm

I may be wrong but I think that it isn't a horribly expensive drug. If it's going to take a long time for their pharmacy to get it you may want to call around to other pharmacies that both take and don't take your insurance to see if they have it. If they do but they don't take your insurance they will be able to tell you what you need to pay for it.

How is he feeling?

Stephanie

mammmia4

7/12/09 8:52pm

Hi,

I don't think it's so much of the expense, but the nurse said it was backordered around the nation, so I guess supplies are short? I guess we'll find out tomorrow what the deal is, and thanks for asking, he's still refluxing and had an episode where his heart felt like it was racing,which coincided with a nice couple of refluxes in a row.... But he is have a regular BM or two every day anyways.. I don't know. I am also wondering that If Erythromycin would work at stopping the regurg/reflux if it's effect would last even after he'd be done with taking it... I guess I will ask tomorrow. I always like to be one or two steps ahead of what's going on so I know what to expect I guess.

Stephanie, Health Guide

7/12/09 9:42pm

My understanding about the Erythromycin is that it is not just used for the anti-biotic effect but is instead used for moving things along the system. Because of this it may not be used short term but more long term. If so, you will need to ask about any long term issues. I took Erythromycin for acne when I was a child and it caused yellowing of my teeth. This wasn't a big deal since it only caused stripes on my wisdom teeth roots since they were all that was still growing when I took it. I would assume his front teeth are all in but still it would be good to ask.

The main reason I mentioned the other pharmacies is that I was told the same thing once about my son's Pepcid only to find that the big pharmacy around the corner had plenty and had access to more but the small pharmacy couldn't get it.

When you talk to them tomorrow make sure to mention the racing heart feeling. It could be a side effect of the meds. It's probably no big deal but it's always a good idea to bring up anything odd when you are doing a new med regime.

Good Luck - Stephanie

mammmia4

7/14/09 11:37am

Thanks for the info on the Erthryomycin, still waiting to hear back from the GI to see....I will ask about them calling the manuf. if they can't get it.....

How can someone reflux when they havent eaten for over 12 hours, that's what I'd like to know, this morning, he complained of it coming up so far in his throat and he hadn't even eaten anything since dinner last night around 5 pm....

Here I was really hoping to get this fixed before school starts back up but at this rate it doesn't look too great does it...

I just can't figure out how he was nonsymptomatic for so many years and it has come back with such a vengence......

Sorry just had to vent :)

mammmia4

7/14/09 1:07pm

Ok,

We can get Erythromycin in a pill form, that's all we can do. I will try my best to get it in him. The GI said it's either this or we could try Reglan....so his dose will be 125 mg three times a day, he weighs 60 pounds. The nurse said we should know in two to three weeks if it's working or not. Cross your fingers and hope for the best. I guess the GI also said something about Bethencol maybe working as well....but he said he wasn't even sure if the erythromycin would work? I guess all we can do is try.

Stephanie, Health Guide

7/14/09 3:08pm

You have a good attitude about trying different meds. So often patients/parents feel like should be a specific answer but unfortunately because we are all so different it's far from an exact science. The only way to figure it out it to try various options. We went through so many options for meds with our kids to find the best solution. The amazing thing was that while we felt like we finally figured out a good solution with Katya, Gabe came along and needed something different. It was a new ball game with each one. The only good thing is that at least the whole thing wasn't new to me.

Hang in there. I hope it works out soon!

mammmia4

7/14/09 4:59pm

Thanks, I am trying....I just hope this will be the magic trick. She said the script would be for a month, so I guess if it works it might, be as you said, a longer term type of med.. His permanent front top teeth are in but that's as much as he has I hope it doesn't cause any trouble.... I just hope I can get him to swallow these, I don't know if I will be able to crush them or not yet, but we'll see.

I still would love to know what caused this to come back for him, if I ever get to talk to the GI again I am going to have to ask how common/uncommon and reasons for this..

To be continues, and thanks for your continued responses, it helps to have someone who has walked the road!

Jan Gambino, Health Guide

7/15/09 3:41pm

Hello!

I wonder if the pharmacist could compound the pills into a flavored liquid?

Jan

mammmia4

7/15/09 4:19pm

I hadn't thought about that one, good thought! I will have to check it out,although these are film coated so when I have been crushing them I have a little pink film to pick out.... Also I thought his dose was a bit high, 125mg 3 times a day. But I called to check and the nurse confirmed it's correct....I thought it was 1 to 3 mg per kg...and this is about 5 mg per kg. Oh well, maybe it will work? Also wondering how to request a scope of his esophagus without sounding pushy to the dr.? Or should I wait for him to suggest it. I guess if he thought it should be done he would have ordered it? I just don't want to get to back to school time and then have tests ordered and interrupt his school!

Jan Gambino, Health Guide

7/16/09 9:24pm

The pharmacist will be able to tell you if the medication can be made into a liquid or not. You can call and save yourself a trip to the pharmacy. I know it is difficult for many children to swallow pills, especially children with digestive issues!

I know it would be easier to schedule any tests during the summer rather than the start of a new school year. Maybe frame the question-if you were going to schedule any tests, would it be possible to do it before school starts? It sounds like the doctor is trying different treatments in an attempt to avoid the need for a test. This is very common and often avoids the need for a test.

Hope things settle down-you and your son have been through so much already! Jan

mammmia4

7/17/09 10:47am

Thanks Jan,

I may have found a way , strawberry syrup with milk....

I felt so bad for him last night, he wants to join karate with his brothers so he watched the class last night and must have refluxed 6 times in the 50 minute class, I don't know how he is going to be able to do all of those stretches and bend over things like butterfly stretch without constantly refluxing from the pressure?...........

I really can't wait til I can get a follow up appointment with the GI, so I can try to get some more questions answered, do they usually suggest when to make the next appt or does the parent have to ask? I would think that they would rather have you come in to save all of the back and forth between the nurse and him and parent? But what do I know? ..........

Well, today is day 4 of the EES and hopefully it will begin to work soon? I wish there was more info out there for parents in this situations....Not knowing I think is one of the worst things out there......And I guess I will wait til I call to update them on the EES to ask about further followups and tests, because I really don' want to become a problem mom.....ACK,thanks for all of you guys support.....I hope he doesn't have to live the rest of his life with this all of the time, I mean, SOMETHING has to make it stop,doesn't it???

Jan Gambino, Health Guide

7/18/09 6:19am

Hello There-It is very frustrating when you and the doctor are still working on the best treatment plan. I am trying to figure out where things stand right now. Your son has been on several reflux medications (Prevacid, Prilosec, Zantac). He is not on Mirilax for constipation and Erythromycin for his reflux and so far, your son is still refluxing quite a bit. Did I get all of the info correctly?

Often the doctor asks you to call and give updates or come in for an office visit to check in. Since your son is on a new treatment plan, it is important to follow up with the doctor in a few weeks/months to be sure that he is making progress and the treatment plan is reducing the symptoms. It can take a bit of time to get an appointment with the GI doctor so perhaps you should call soon and see when the doctor wants you to come in. I know you are concerned about getting in as many appts as possible before school starts. Sounds like you need a plan for managing the reflux and constipation at school too. My kids needed special assistance with this and I have written quite a bit about going to school with reflux. Search this website for the blogs I wrote about this topic. Diet, staying hydrated and access to the bathroom can really help a child manage constipation at school.

I have heard from many parents that sports and reflux do not mix. Try to time his meals so that he exercises on an empty stomach (not starving but not just after a full meal). Let him take sips of water but try not to guzzle a whole water bottle. Avoid sports drinks with a lot of sugar and certainly no soda or iced tea loaded with caffeine.

As his digestive system calms down with the new medication and treatments, he should have less symptoms during sports. Let the coach/teacher know and work out a plan for taking a break as needed. If the coach/teacher knows he has a medical problem, he will certainly let him take a break. Otherwise, the coach may make him keep going and assume he isn't trying hard enough, needs encouragement, etc.

The bottom line-let him go at his own pace but let him participate.

Keep in mind that things will calm down soon as the treatment starts to do its work. I know there is a lot going on right now.

Take care,

Jan Gambino

The Reflux Mom

www.refluxmom.com

mammmia4

7/18/09 8:43am

Jan,

Thank you so much for your time in answering me!!! You are correct, currently he is on 17 grams o Miralax and 325 mg a day of Erythromycin. I am definitely going to search this for the info you have written, sounds like you have survived the older child at school with reflux and constipation thing.

I am to call the Dr. in a little over a week to let them know how things are going. I think my main problem right now is that the only time I saw the GI was in June and he suspected constipation as the cause and now we've moved on to EES and I am the type of person who likes to know the "plan" and our discussion really only covered Miralax, which I guess is my fault for not taking the conversation any further but I wouldn't have predicted this??? I guess I have learned my lesson, ask ask ask while in the drs. office.

Thanks so so much, I will update in a week or so to see how the EES is working...

Also, I assume you've been around lots of this, do you have any thought how long it's taken for kids to see a result on EES? THanks again so so much! Great advice I will follow.

Kim

Jan Gambino, Health Guide

7/20/09 4:01pm

Hello! You are doing the best you can-there are so many questions and concerns at first. It is really hard to manage it all and figure out the best solution.

You should see some progress in the first days or weeks of treatment. If there has been a long term issue with constipation, it can take a few months for the digestive system to show improvement and perhaps change the diet and fluid intake so the medication can be reduced. That is why it is often important to call the doctor or have a follow up visit early in the treatment phase.

Jan

mammmia4

7/24/09 2:35pm

Day 11 Erythromycin

still refluxing and had to cut down on the Miralax because the Erythro has kept things moving on the lower end of the GI tract........

This morning, after having not eaten anything since last night and while getting his erythro into him with a teaspoon of marshmallow fluff,and some water to wash it down, he refluxed the fluff, and did it like five times during eating breakfast and after as well. I gave him twenty minutes in between the med and breakfast and still this....Is this normal, to be refluxing while eating, and with so little having gone in, and an innoculous no fat no spice no chocolate no dairy dose of erythro?

I don't know how much more hope I can hold out for this to work. But we'll keep giving it to him, I think I will call on Tuesday and update the GI, that will be two weeks and we'll see what we can do from there....Is that "normal" with reflux to reflux so many times continually while trying to eat a meal?

Thanks!!

Jan Gambino, Health Guide

7/27/09 4:52pm

Hello! You are being so patient. It is so hard to wait and give a new treatment plan time to work. Yes, it is a good time to call the doctor for advice on how to proceed from here.

My refluxers have a very difficult time eating food in the morning. I call this having an "eating window". They are very happy to skip breakfast and start eating around 10 or 11am. They eat most of their calories in the middle of the day and least in the morning. It is a very difficult schedule to manage during the school year!

I think it is possible to reflux anything. My kids can reflux a glass of water! It is worrisome that he is having such significant reflux events despite the treatments aimed to strengthen the Lower Esophageal sphincter and to move food through his intestines. It does seem like his digestive system is moving very slowly and not very well coordinated in moving food.

Good luck and let us know what you find out from the doctor!
Jan

mom of one

7/29/09 7:35pm

If you don't see any improvements and in fact it getting worse, then you should consider STOPPING WHAT YOU ARE DOING!!!

Understand that relfux is caused because the gut flora does not contain enough good bacteria and all you did was kill off everything with an anti biotic.

You need to replace the good bacteria. Research probiotics. Next seek out a doctor that deals in fungal and bacteria overgrowths in the body.

Dont' wait too long before you know it, your child will have allergis and eczema from leaky gut and toxins being delivered into the blood stream.
Candida and other fungi and bacterial cuase various symptoms.
Use the internet and research.

I did and my son is 100% cured and has never been sick.

Anonymous

7/29/09 9:24pm

Thank you for your input, I understand that reflux can be caused by MANY different issues. I also UNDERSTAND that we are working on figuring out what it is.. While I am so happy for you that you fixed yours sons issues with reflux, I think you need to understand that not everyone has the same cause of reflux. Also, I haven't seen any scientific studies about the big cause of reflux being an imbalance between the normal flora and pathologic flora of the GI tract. In fact if that was truly the cause of everyones, reflux, is it a large medical conspiracy to not disclose and research that as the truth? Would you please be so kind as to provide me to some links of peer reviewed and replicatable scientific research proving what you are telling me? Thanks, I appreciate it so so much :)

Mom trying to help

7/30/09 9:13am

If scientific data is what you are looking, which is funded by the government and pharaceutical companies than you are out of luck. That is why they have drugs like PREVACID AND ZANTAC. To make money. Why would they show you a study on how you could cure yourself.

Traditional herbs and minerals have to found to help many different diseases, yet we don't use them because there are no "studies". Well, these studies don't prove anything. They studied children's cold meds for years and then decided they were not good. So how can you trust a study anyway?
Did you know that oregano oil is an antifungal and antibacterial? Why don't they use this instead of creating new antibiotics which bugs become resistant too?
I understand you don't know that much on this subject, but I do and I am hoping to share my information with you so you can cure your child as opposed to just treating him.

Since it is just easy to tyr probiotics with no side effects, don't you think you should widen your approach and try something non-invasive? There are other studies which show IBS(irritable bowel symdrome) is caused by an inbalance in gut flora. But many doctors didn't learn this in school and since probiotics are not on the FDA list, they don't use them. But doctors do recommend yogurt....

Just trying to help you see the light.

God Bless us all.

mammmia4

7/30/09 3:48pm

Thanks, I understand your view point... And I appreciate your trying to help and am so glad you found the answer for your son. I am still in the quest for answers, and will look more into the probiotic thing, and do give him yogurt. But I do want to have tests done to see if there is an anatomical problem and rule those out as well, like a hiatal hernia, or any strictures and or damage to his esophogus.... I also read that weak LES can run in families which makes sense as my mother, myself and my father in law and my brother all have and or have had problems with this...

God bless you...

Mother trying to help

7/30/09 4:17pm

Can you tell me which studies show that LES is hereditary? My physician prescribed calcium as this strengthens the mucsle of the LES.

He did not believe in medication, only curing the problem. If your son had a serious issue, they would have found it out through x-rays or other testing.

I hate to see you go through all this and your son suffering when I know in my heart these doctors will not be able to help him. I went to various GI doctors who wanted to probe his rectum and his throat to see the cells and why formation they were. He would have been put under anesthia at 6 months if I chose to do this.

Instead, I chose a doctor who took a stool sample and found all the answers with that. I think if I email you enough times, you might get sick of me and maybe try what I've tried. If you need specific details on what the doctor told me to I will be more than happy to tell you.

Gob bless us all

mammmia4

7/30/09 4:39pm

I don't have the energy to go back and find the study about a weak LES being possibly hereditary, sorrry...And we don't know yet if my son has a serious issue yet because he has only had an lower abdominal xray thus far to check for constipation... I don't believe this GI is a pill pusher, as he is trying for the easiest explanations first, such as constipation. He also had me discontinue the meds which weren't working ( zantac, prevacid, prilosec) because, sharing your sentiment, "if it's not helping why continue" to which I also believe. But with that said, I await a few more tests, possibly a barium swallow to check for strictures and hiatal hernias, and a possible scope to check for cellular changes in his esophagus and condition of his LES... To ignore the possibility that there could be something anatomically or cellularly wrong and not have it checked out would not set well with me....
:)

mammmia4

7/30/09 4:42pm

Thanks, am still waiting a call back from the GI, trying to remain patient! Will let you know what's next when I ever hear back!!

trying to help...cause I've been there....

7/30/09 6:15pm

Ok. If you would rather put your child through the task of invasive procedures rather than try something harmless and non invasive, is up to.

mammmia4

7/30/09 8:46pm

Yes, yes it is...

Jan Gambino, Health Guide

8/ 2/09 9:09am

To all,

It is important for every family to work with a medical team to determine the best treatment. Each child is different and only a medical professional and the family have the benefit of using all the tools available: observation, physical exam, medical records, professional training, experience, etc to determine the cause of symptoms and develop a treatment plan. I have spoken to hundreds of moms, dads, grandparents, day care providers and medical professionals. While most of the babies and children have reflux, a few have symptoms that look like reflux but it is not. Celiac Disease, Eosinophilic Esophagitis, IBS, food allergy and even seizures. One baby had reflux symptoms but it turns out the baby actually had diabetes. Keep in mind that these other conditions are not as common as reflux but it is possible that another condition is really driving the symptoms. We have all felt the frustration of waiting and wondering, hoping for answers, being disappointed that there wasn't a diagnosis, treatment or cure. We all will take a different path because our children are all different. Even my two children with reflux took two completely different treatment paths. There is no one size fits all treatment or best approach for all babies and children with reflux. If there was, we would all be doing that. So keep working with the medical team, ask questions, do your own research and that will ensure a good outcome.

Jan Gambino

The Reflux Mom

www.refluxmom.com

mammmia4

8/ 2/09 12:56pm

Very well said Jan, the voice of reason.

Thank you! Still waiting for the GI to call back....Will update when I know something :)

Jan Gambino, Health Guide

8/ 2/09 3:34pm

Hello! I know you will be interested in a new study just published in the August issue of Gastroenterology about gut microbes and GERD. It is a really exciting study and I am eager to learn more about it. I can just view the abstract-I would like to see the entire article. What do you think? Jan

Mother tying to help

8/ 3/09 9:46am

What do I think? I have posted several helpful suggestions on this website which directly correlate gut flora to the problems of reflux, not to mention other issues such a Austism and various diseases from diabetes to cancer.

I think that you will soon see probiotics, which are currently not regulated by the FDA, all a sudden become regulated or require prescriptions. If they can make money off of it, they will..... If anyonw out there truely believes that people genuinely care that you get better rather than fill you prescriptions and make money off of you, really needs to rethink the entire health care scenario.

My son had "reflux" for 8 months before we found out he had a yeast overgrowth. Mean while both pediatrician and gastroenterlogist thought he would be autistic becuase most autistic children have reflux.... see the connection..... I hope you do..

God Bless us all.

mammmia4

8/ 3/09 4:02pm

Thanks Jan for posting this, I am going to try to access it and will let you know if I can and what the conclusions are! Still waiting for the GI... :)

mammmia4

8/ 8/09 10:29am

Hello,

I am just trying to update our situation, I updated the Gi office on July 28th, again on July 31st and again this last Weds. The turn around time is supposed to be 24 to 48 hours to hear back. No trace of a phone call from them in this time until Thursday only for them to finally leave a message that they have tried me several times to only get a busy signal (not possible, I have call waiting and have been carrying around my cell phone constantly, plus no record of their phone number) or that they have gotten voice mail and not left a message because my name isn't on the message (again, not possible because I would have a record of their number calling, even if not answered). But on their message, of course they gave me no information as to what to do with my son next. So I returned their call and left another message to hear nothing. I am beyond frustrated with the office, they obviously have been calling the wrong number or else not calling at all. In any case, all I want is the info as to do with my son , what the dr. wants todo next so I can schedule it( never gonna happen before school now) or else get started on a next treatment. All of our other drs. have no problem with leaving us a message with some detaills, I really don't understand how it is that hard and just want to know what to do..... I guess I should start calling every day and hoping to actually get a person. I also sent an email that it is fine to correspond via email if that would be more efficient for them trying to help and also get my info.... Or, should I just call on Monday to get an appt with the GI, thinking that I will not hear with any reliability from these people in the office. Any suggestions on an mature way to handle this? I am focused on getting the info about my son, at this point that's all I want to know, whether or not they were calling the wrong number or not calling at all is not the point (irritating to be sure, but not the point here.)
Thanks if you've listened this far!!

mammmia4

8/ 8/09 1:27pm

http://www.medpagetoday.com/Gastroenterology/GERD/15369

Jan, Is this the study?

mammmia4

8/10/09 3:46pm

Ok, So now I am to try the EES with Prilosec again, and see how it goes.....As the nurse said, we got to get him feeling better, this is not the normal thing that no drug is helping. Sigh. Dr. is on vacation til next week, so will give this a try. I looked it up and didn't see anything contraindicating giving these two meds together, I hope I'm right! :)

Jan Gambino, Health Guide

8/12/09 7:43am

Oh how frustrating! It sounds like the office had the wrong number! Someone else must have a lot of missed calls and messages on their machine/cell phone. I hope you have called and vertified the phone number with them.

Unfortunately, it does take some time and trial and error to find the right treatment plan. It feels like slow motion. I am not patient enough to wait and watch. I want instant results-especially when my kids are not feeling well.

It is hard to say if you need an appt or not. Some doctors prefer getting updates by phone and email while others want to schedule an appt to update the treatment plan. You might need to meet with the doctor one more time in person or by phone so you can ask for specific information about how he/she wants to deal with changes to the treatment, questions and concerns. Be sure to tell him/her that you had some difficulty contacting the office and communicating with him.

I am sorry that things are not getting resolved before school. I know that was your goal. At this point, try to be observant of your son's schedule for eating, using the bathroom and taking medication so you can tell the school what is needed at school. If he needs to have a meal/snack at 11am but lunch isn't until 12:30pm, he may need permission to have an earlier meal in the classroom. This was so, so important for my daughter. She really needed to stick to a schedule. Her stomach could not be too full or too empty or she was in terrible pain. That is why I carried a snack bag and water bottle around well past the stage of needed a diaper bag...Just a nibble of crackers was enough to get her past the pain.

Jan

mammmia4

8/12/09 10:52am

It was very frustrating!! Today I have to call the nurse back to get a refill, give her a new cell phone number and also give them the peds fax number that they misplaced..Also will need to ask her if I should call next week or if they will...She did ask if I ever had my first email questions answered,(NO) and said Oh goodness, so I will still be waiting for answers to those naggin questions. Oh, patience is SO not my virtue either with the kiddos. It's an excellant idea for me to ask if he could have a snack before lunch, he just doesn't want breakfast at all..Luckily his teacher is one I know pretty well so she shouldn't be hard to deal with!! Ok, I guess that is it til the Dr. returns from vacation, next week maybe I will know something? I really am hoping he will do some testing, as he has been complaining of a clog in his throat and now has two cavities needing kiddie root canals, likely from the reflux. We got a perscription for a kicked up flouride toothpaste to try to strengthen the enamel that's been worn down....Thanks for the response,,,Did you see I posted a link to I think that study you had mentioned on down the page?

Thanks again

Jan Gambino, Health Guide

8/21/09 6:49am

Hello! It sounds like the office staff have some issues getting messages to the doctor. When you go back to the doctor or talk by phone, be sure that you tell him/her what happened. You are being more than patient. I would most likely have a complete temper tantrum!

Cavities and root canals? Ok, that is a sign of GERD too. Poor boy! My daughter had frequent cavities when her reflux was not well controlled. Having cavities filled always triggered reflux too-anesthetic, more secretions, poor eating...not good.

Yes, I did see the reference to the article. I am eager to attend a conference this fall to learn more. You can be sure that I will post any new information right here on HealthCentral.

Good luck with school-does he begin next week? Jan

refluxqueen5

9/26/09 10:47am

Well, It's been a long haul thru the summer. A couple of weeks ago, he got an EGD which showed rings in his esophagus, possible granulatous tissue in his stomach and possible healed ulcers. The doc took ten biopsies and I am still waiting for the results and the opinion of the GI. The other GI who did the EGD said the rings were a possible sign of Eosiniphic Esophagus, and that the ulcers were biopsied for possible H pylori. Aggh. Waiting is terrible and the more I investigate the EE the more anxious I become. I did get a little info from the nurse who said that his EOS count was slightly elevated. But I was hoping she'd give me a number, because from what I have read, up to seven can be from GERD, seven to fourteen a combo of GERD and food allergies and above fourteen most probably EE.

I just wonder if it's possible to have the rings aka trachealization of the esophagus WITHOUT it being EE. But I haven't been able to find a definitive answer in papers on the internet. EE is not really something I would wish on anyone from what I have read so I am hopeful that it's just GERD with or without slight food allergies.

Jan, Do you have any idea if rings can exist without EE? He's had two teeth extracted over the summer from the reflux. He really didn't like being scoped, woke up saying at least he doesn't have to do that again, but now with the rings, I am unsure if he will need another EGD in the future after treatment of whatever to see if the rings go away. Sigh, so many questions, and it's been two Fridays now since I should have heard.

Well, that's it for now, thanks again for any input or answers would be wonderful!

Listen to your body.......

6/25/09 10:36pm

Reflux is just a description of what is happening, the contents of the stomach coming back up through the esophagus into the mouth or exiting the mouth. It is not a condition. If your son also has constipation, you have a flora imbalance in his gut. Check on probiotics. Also, have a doc perform a stool sample to determine the amount of flora in his gut and intestine.

The body has a great way of letting you know something is wrong and to help it fix it.

When you have a virus or infection, you get a fever. This is the body's way of letting you know it is sick.

Constipation is not normal and is helped tremendously by probiotics. A stool sample can be taken without any invasive measures.

Good luck and remember to always ask this, why does one person have an issue and not the other? That's what I did when my newborn was diagnosed with so called REFLUX. I asked, "why does my infant have it but not my friends?". Since they could not answer this and prescribed PREVACID, which does not have any clinical studies on children under the age of 1 and blocks calcium absorption, I had to research it myself. Hope you learn as well.

mammmia4

6/26/09 9:49am

Thanks, I am not even sure that he has constipation as of yet, he goes at least 3 times a week and it's not painful for him,,,since he's been in school, I have really not paid alot of attention to his bowel movements...so we wait....Reflux in an older kid can be caused by so so many issues that I am not ready to focus on constipation til I know with certainty...But I hope that is the ticket, cause that will be the easiest fix...

tyring to help

6/27/09 3:48pm

You hit the nail on the head by saying that reflux is caused by other issues. You need to focus on that part. If you figure out what the issue is, you can fix that and the relux is gone.

My son had a yeast overgrowth and we treated him with Nystatin and he was better and never threw up again.... plus we give him probiotics everyday which help in to fend off all types of bad bacteria.

Hope this helps.

mammmia4

6/28/09 9:04am

A yeast overgrowth, who would even think to look at that, how did your dr. figure that one out? That is the worst thing is figuring out what is really going on and trying to be patient isnt' very easy either. I did talk to the dr. secretary who told me the xray was normal, but that I might want to give him miralax anyways, and that I would hear more Monday. So I really don't think he's constipated or it should show up on the film, but give him Colace for a while to be able to say I did it. and if it helps that's even better!

mammmia4

6/28/09 9:04am

trying to help

6/28/09 8:39pm

I saw a doctor in Manhattan who diagnosed my son with Yeast overgrowth and believes it might stem from the HEP B shot they receive in the hospital.

The next course of action you should consider is a good stool test.

Good luck and most of all GOD BLESS.

mammmia4

6/29/09 10:58am

Thank you!! You too! :)

dennis

6/ 6/10 11:26am

I didn’t know how many people suffer from Acid-reflux, I will try to help as many as I can, I’m 59 years old, 3 years ago I was suffering from Acid-reflux, I tried just about all the drugs in the market but, it didn’t help much, and the side effects were terrible, a friend of mine told me about this natural food supplement that he tried, I ordered and tried myself, it was amazing, no side effects, safe for all ages including babies, I didn’t have to go on a diet, I eat and drink anything any time as much as I want, and I mean anything including coffee, sodas. pizza, chocolate spicy foods (my wife is mexican),. I didn’t have to make any lifestyles changes, I don’t have to elevate my head when I sleep and it lasted for more than a year, I had to order it 2 times since for myself and 1 time for my daughter and my son, my daughter was 18 years old and 32 weeks pregnant, my son was 10, the baby is now 13 months old and my daughter and my son had forgotten about Acid-reflux, until two weeks ago my daughter ask me for the web site address because one of her friends at school have reflux, I have told many of my friends about it, try it and tell your friends too, let me know if it work for you, the web site is betasupplements.com.

Mommasquirrel

2/15/12 12:58am

I am so very scared for my LO. We have tried Prilosec, Zantac and Prevacid. None work! My LO still cries and refluxes clear acid and always making bubbles due to her gas and reflux. I hate and I mean hate my doctor and his methods of curing my daughter. My LO was born three weeks premature and has been been home now for two months. He says this is something she will out grow. Technically she is four months. We have had an upper GI and an Xray done. Both showed that her bowels moved but her stomach had not emptied as quick as they wanted. Of course they said that nothing was wrong with that and it would pass. I am fed up with the doctors and the tests. It just seems like nobody will truly help her. I just cry when that acid comes out her nose and she screams in so much pain because it burns. We have switched formulas time and time again. She is now on the second try of predigested formula. The doctor said to add organic rice cereal to her formula but we had her on a formula with rice and all it did was serverly constipate her and again she would be up all night with bowel pain. So his advice is to do it again. He is nuts!!! Plus she had an allergic reaction to it but he claims it is impossible because babies hardly ever have an reaction to rice cereal and the odds for her are slim to none. I just want to slap this doctor in the face and say wake up my daughter is hurting and I can't help her because you refuse to help me!! I am not a mother who is looking for attention and fake that her child is ill or try to hurt them to get attention but I swear that is what I feel their treating me like. Like I am doing something wrong. Please somebody help me!!! What should I do. Oh and I would love to switch doctors but unfortuantly I have to wait because she is on Medicaid. So any advice I can use to take back to this idiot doctor and hopefully he will listen.

Reflux nonresponsive to Prevacid, Zantac and Prilosec

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