My 11 year old has been burping food 20 times a day for 5 months!

[debkoch]

My daughter started burping up food after a party new years eve this year.. She is 11. She was a little prone to this prior to the party but it only happened once every few months.   Now she does this almost every time she eats. (20 times a day) She's had an endoscopy, motility test, gastric scan, ultrasound, and a gall bladder test. She has a small weakness at the base of her esophagus.   The gall bladder test (torture for 3 hours) was inconclusive they said because she moved too much.  She is on 40 mg of nexium 2 times a day, and a drug called Reglan.  She is not getting any better after a month.  In fact tonight she has added stomach pain and incredibly loud stomach gurgling followed by frightening burps to her symptoms.  Her pediatric gastroenterologist is suggesting it is psychosymatic.  I don't think so. She's missed over 30 days of school.  The talk of esophogeal cancer being caused by constant acid reflux is terrifying me! HELP!

[ChitChatNine]

What were the results of the endoscopy?  If they were normal done with biopsies the risk would be minimal I would think but I'm not a Dr., just a mom like you but with too much reflux exp. with my kids, etc.

You must trust your instincts because I have seen oftentimes when all else fails they say "in the head" and only when it gets bad enough that they find a DX then they all say, OH YEAH you were right!

My 17yr old was on Prevacid for a few years and recently they found out it was all Gallbladder related and her GB was removed after a HIDA Scan showed only 4% function!!!!!!  Was that the test your little daughter had?  I am so sorry .. it is long and must have been hard for her to endure.

They thought my dd had IBS for a long time and blamed it all on that .. then one day the pain got so bad she landed in the ER and was in-patient for 8 days .. it took 5 days to find out the cause was Gallbladder.

Since that day in Jan of this year she has only needed prevacid once for a bad sour stomach but hey we all get that sometimes right?

Reglan is a VERY powerful drug ...........................could it be making the burps worse and the pain worse?  It has a very strong neurological based component to it I think .. I will look in the health pages drug list for you and post the side effects, etc.

The docs oftentimes don't tell you what Reglan is .. dont' get me wrong I'm not saying don't use it but it is a major league drug ..

I have the burps you describe when gallstone or kidney stones are acting up ..........and, btw, my dd did not have any stones at all .

cheryl

[debkoch]

Thanks, I am worried about the amount of nexium she is on too.  It wouldn't be so bad if the drugs were helping her symptoms but their not really.  The endoscopy was normal according to the dr.   The only test that showed a problem was the motility test but the dr said it was a small weakness.  The stomach gurgling, pain, and incredibly loud burps just started yesterday.  My daughter had the gall bladder scan too, and the test was unreadable because they said she moved too much.   I thought she was being pretty still.  If they needed her imobile they should have strapped her down I guess!  
Deb

[ChitChatNine]

Here is the Reglan link:

http://www.healthcentral.com/acid-reflux/find-drug-1256-150.html

Have they done stool tests and a test to rule out H-Pylori?  Just some thoughts but again, I'm not a Dr ... stool would ck for parasites, bacterium, etc.

Not too familiar with Nexium dosing .. we use Prevacid ... Will your doc allow Gaviscon at all or mega Mylanta?

Cheryl

[debkoch]

I don't think she's had a stool test.  Would parasites cause burping of food?  I would think that would cause full blown vomiting.  She said tonight when her stomach was gurgling that she felt like something was moving around in her stomach.  This just started yesterday.  We are getting a second opinion at Lehigh valley hospital on the 28th of May.  I hate how long it takes to get into see these doctors!  Thanks for the link. Deb

[ChitChatNine]

It was just a general question because everything seems to have been thoroughly done to date .... anything going on in the intestines I would think could travel upwards into not so classic symptoms.

C~

[JennasMom]

My daughter has had a similar problem, and ever since she had an Upper GI she has not been able to hold down much food. She is regurgitating food into her mouth, and the MD's dont seem to be able to offer any suggestions as to why she was fine before the Upper GI and now since she drank that barium she cant seem to stop the regurgitation.  She is also on Protonix 2x a day 40mg, and also tried Carafate and Zantac, She has only been able to eat breads and today we tried Rice pasta, it seemed to hold in her stomach somewhat. My friend who is a Pharmacists said that sometimes Erythromycin is used to treat motility problems small doses 3 to 5 mg per kilo of weight. You might want to try that I am going to try get that for my daughter.  Hopefully she can hold it down. Let me know if you find out anything. I will also post if I find any more info

[ChitChatNine]

Has the barium passed thru yet?  Make sure it passes out completely .. if it is still there it may be pressing up causing pressure as in reflux?

I've heard that eurthramycin works well .. look @ Gretchen's post ... her son is on it ... I'm going to send her a note to see if she can post to you.

Cheryl

[JennasMom]

Yes we had her finally exray'd to see if all the Barium was gone and it was backed up on her so after a couple enemas and some laxatives it is gone, but she is still unable to consume a normal meal, yesterday we bought some of that Smart Water plain water with electrolytes just to keep her hydrated.  We are only able to keep breads in her and the Rice Pasta seemed to stay down but she is only eating a half cup of food at a time.  I am new to this site and I am not sure how to navigate around, how can I see Gretchen's post not sure how to do that?
Lisa

[ChitChatNine]

It wouldn't be too easy ..... you can see her screename on the right hand side and that would alert you she answered somebody or created a post but you wn't be able to easily find it bcz this post was contained in another post I think as a reply so I am going on memory.

I just sent her a message for you :)

Cheryl

[ChitChatNine]

I was told that anything that upsets the water balance within the intestines can be a sure fire indication that a reflux flare will follow.  This I was told when my son at age 12weeks had a bowel resection.  The Pedi GI was awaiting an awful reflux flare.

that would be my best guess as to what is happening right now as all has been disturbed with the barrium, etc. making symptoms so much more pronounced in the reflux dept. ????

You can try to add things to help weight down the liquid .. the water itself may actually create reflux as it is so light up and down ... but I understand it's tough not being able to drink anything else .......... stay away from milk too I would think.

Baby food in baby jars PUREE STAGE I is another thought I have for you to reintro solids at this difficult time

Cheryl

[JennasMom]

Well she does not drink milk and that was stopped years ago, due to it being a major trigger for her reflux.  

I think you hit the nail on the head, the barium just has given her a major upset and flare up. We are trying at this point to just keep down carbs, breads, rice and then we will advance to some baby foods, someone else had suggested that to me too.  I am also going to try some Rice Milk if we get through this bad period. I just wonder how long will this flare up last?

I sent her back to school yesterday (she is 14 and also mentally challenged) for the first time in 2 weeks and she did regurg in school three times with mouthfuls, but she was able to make it through a whole day. I had the school nurse give her Maalox in school just to calm her esophagus and it seemed to settle her just a bit.  I am giving her Protonix 2x a day and I am going to start giving the second dose before dinner instead of before bedtime since it seems to have eased her pain in the LES.  

She did have an endoscope last thursday and she did have two stomach polyps, (which I have read can be caused from long term use of PPI's like Protonix etc.  We will be getting the pathology from those polyps next week.  

Note to Deb:  I would try stay away from the Reglan and try to do the Erythromycin, Reglan has major side effects. The Erythromycin used in this way is not commonly known and my friend who is a Pharmacist in a hospital suggested it.  Also I have been visiting a site called "healthline.cc" (not .com)  This guy has a radio show and is an expert nutritionists,(MD) He has some wonderful products that really help. and certifies MD's all over the country to administer his health products that attack every sort of ailment I am going to travel to see one of his practitioners for other issues and my daughters reflux issue.
Lisa

[ChitChatNine]

You can also make your own pureed foods that may be tastier as you reintro .. one other thought is if you go with the rice milk (we know rice milk very well, here, too) is to ask your Dr. about a product called THICK IT and that will thicken it .. it is used for geriatric patients as a thickener.   Not for long term use as it may fill her up and less nutrients but may be worth a try if nothing else helps~!

SO SO glad to have helped!!!

Cheryl

[debkoch]

Thanks for the suggestion of erythromycin.   What does it do for reflux?  My doctor says the reglan actually strengthens the muscle to keep the food down.  The amount of food that she burps up has lessened but it is still happening enough to be sent home from school 2-3 days a week. She's been on the nexium/reglan combination for about a month now.
Deb

[ChitChatNine]

The nexium may not stop it from coming up; but it should stop the acid from burning when it comes up.  Let me see if Gretchen is around to answer the other ? on how the med works .. my son was severely intolerant to caseine in milk ... so with him, he turned the corner at age 2.5 when he went onto rice milk and off alimentum under guidance of Pedi GI ..

Cheryl

[gretchen473]

I don't know a ton about the "how", but here's an article I found that talks a little about both Reglan and Erthromycin. http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/index.htm.
Basically, I think they just make the stomach contract(not painfully) and it empties faster. Not to be to gross, but by emptying faster, I don't see an increase in poops or anything. The side effects of both Reglan and Erythro are N/V and stomach aches. Kind of weird, but I think they mean at bigger doses. Jarrett takes 2.5cc 3 times a day of liquid Reglan that's 5mg/5ml. On the Erthro, he took 2cc twice a day(I think). The funny thing is our local ped who's been a doc for 25 years didn't know anything about Erthro. We're in a smaller town and when I told him the dose, he said "That dose isn't going to help him with anything." I tried to explain to him it wasn't an antibiotic dose. He called the pharmacist so hopefully they explained it better. We just switched Jarrett back to him last year after getting all his care at a large facility. Some days I think he wants us to go back!!

Gretchen

[ChitChatNine]

Can it be compared to taking antibiotics to thwart off ear infection; low dose for a few mos kind of thinking?

C~

[JennasMom]

Another med that they tried to put my daughter on is Carafate, used for ulcers, it coats the stomach and eshophagus and can sometimes calm it down. In  the hospital they gave it to her in pill form but the Ped GI gave it to us in liquid form. by using the liquid form it calms the esophagus and stomach and coats it good.,in the pill form it only coats the stomach and not the esophagus, therefore the reason for the cocktail with Maalox and Carafate pill to coat both. I found that she was able to keep down the Carafate pill and not the liquid. So I might go back to that today if all else fails.  I think also I am going to try probiotics too.  

We are on the cusp right now and they said that if I dont get her eating they are going to put her in the hosp but God willing we are going to get better today!

[ChitChatNine]

Please keep us posted.  Yes, I think Carafate is a wonderful drug and with the Mylanta is even better .... for anybody reading this .. be sure your Dr. has given you the script PLUS be sure the med MUST be spaced out from the reflux meds or the reflux meds will not absorb and work properly.

Let us know .. I'm thinking of you and the probiotics .. I am with you 100% .. I go there, too, as a last resort ... others use them all the time!

C~

[JennasMom]

Spoke to MD and they said that all of the pathology from the endoscopy came back normal!!  Praise God!  So far today she has not regurgitated,,,, another blessing! If we get through the evening meal I would say that we are on the road back.!

I read on a couple of websites some of the more serious side effects from barium are back pain, and prolonged cramps, which she had, as well as complications to existing illnesses. Tou che Cheryl!

Anyways, today has so far been a good day!  I would like to thank this forum for giving me ideas and comfort!

Deb, I hope and pray that you get some sort of answers, being in the dark is the worst feeling. I just thank God every minute for people to share my woes with.

Cheryl, thanks for trying to help so many of us! you are an inspiration. Your insight and genuine concern are uplifting!  I will keep you posted later about how we do tonight!
Lisa

[ChitChatNine]

My turn tomorrow.  My 10yr old sees the pedi GI .. for constipation and stomach cramping issues ... as a toddler she had anal fissures .. all went away along with the constipation and now 8yrs later it is back and for some very bizarre reason DayQuil is the only thing that helps ... I give it sparingly at night when the cramps are bad .. it is sudafed type product, cough med + tylenol .... I will be sure to tell the Pedi GI this tomorrow.  She was getting reflux, too, when it was bad from being pushed up .. but a Fleet Enema at Ped's advice took care of that problem only now still having the bad cramps ... Miralax is helping the stool but not whatever the problem is.

Thank you so much for your kind words.  Whoever you know send them over.  I find reward in helping others ..... as others have helped me along the same path many yrs ago.

This is encouraging with your daughter!!!!  I hope she gets better and better as the days go by .. watching our little ones suffer is so hard .. it isn't in the textbook.

Cheryl

[JennasMom]

Maybe you could ask your ped GI if they have ever heard of anyone reacting to barium like what happened to my daughter sometimes you come across other areas where someone has heard of other things and how they dealt with it.  

Anyways my daughter regurg'd 4x but I think I found out what the trigger is,,,,,, if you can believe it,   drinking! She hadn't drank any water all day until around 4:30, then she refluxed 4 times in a row.  It happened the same way yesterday, she was fine until she drank the rice milk.  Well at least that is my thought.  But we are still doing better than yesterday. Anyhow, I am not sure what the rest of the night is going to bring, but I am holding out hope!  TTYL
Lisa

[JennasMom]

Have either one of your kids been tested for Celiac (gluten-wheat allergy) That does cause a whole lot of intestinal problems. It runs in my family and two of my sisters have it.  Deb that might be an idea for you too since, reflux is also a side symptom for celiac disease. It definately causes abdominal cramps too.  Sometimes during endoscopy they test for that when they take biopsies of the stomach. Or some other food allergies sometimes can wreak havoc on kids digestive systems like lactose or there is a test that they do for stomach allergies but I think that it is done froma biopsy of stomach tissue.  We had a descent night and no more regurg for today! Blessing to all until tomorrow!
Lisa

[ChitChatNine]

We've avoided biopsies to date and the ones tested via blood for makers were ok ..... came close with my 17yr old in january but they feel the inflamamtion they saw on the CT Scan was viral .. whew .. it was close to scoping time for her.

On the water / rice milk being a trigger it is the consistency being so thin that may be the problem.  Wonder if something thicker would work better .. they have a product called thick it the GI's can order to add to help wt. things down.

Just think 10yrs ago this was all new for the specialists and today they are all recognizing our kids have issues!

Cheryl

[debkoch]

Thanks for all the good wishes!  One of the frustrating things about my daughter's illness is that it can be triggored (not the original cause) by stress.  If she gets upset, she burps up food.  If she eats too much she burps up food.  Once one of these things happen she then continues to get sick repeatedly after eating, no matter what she eats.  We are at our wits end. She missed school today because she remembered she had a spelling test as she went out the door for school and started bringing back breakfast.  So then of course nothing stayed down all day after that.  It then usually takes a day or two to get back under control until something else stresses her or she eats something fatty, or too much of something.  Then it all starts again.
Deb