Posted By Posting
Jan 17, 2009
massfiasco
kids who fail medication
Hi everyone,

I posted here many months ago, but have some new questions.

My son is 6 and has severe reflux. He has had 4 endoscopies and is scheduled for his 5th next week... moderate esophagitis is usually found in the biopsies. Since he was diagnosed at 3 years old, he has been on virtually every medication, and none work very well. Prevacid worked for a period of time when he was first diagnosed, but that eventually stopped working. Currently he is on Prilosec and that reduces his symptoms about 50%. He vomits large mouthfuls of food into his mouth, and then chews and swallows it again, over and over all day. Seriously, this happens 20-30 times per day, and those are just the times I notice it.

Other meds we have tried include Protonix, Nexium, Zantac, and combination low dose erythromycin (even though two gastric emptying studies showed normal emptying).

We have had him tested for food allergies, both skin and blood tests, with no reactions to anything tested. He is normal sized with a good appetite, and has no sleep problems... He also doesn't complain about the refluxing, probably since he has done it all his life. He frequently smells like stomach acid and I'm afraid to know what has happened to his esophagus in the last year that his symptoms have been uncontrolled.

So what do you do when your child does not respond to medication? Our doctor (Children's, Boston) is talking about a fundoplication. I'm terrified. The study next week is to look at the degree of esophagitis and place a Bravo Capsule, and our doc indicated that the results of the Bravo will tell him if a fundo is warranted. He said, "If he's refluxing like 50 times per day, off meds, he should definitely have the surgery." I can tell you right now that my son is refluxing more than 50 times per day off meds.

Have any of you been in this situation? I don't want him to have the surgery. I want to try *everything* before we go there. I am looking for any alternative treatments that we can try to see if we can reduce the vomiting.

Also, my son's reflux has never been linked to any sort of food... His refluxing may be worse after eating greasy food with ketchup, but he refluxes after eating totally benign foods as well. In fact, after one endoscopy, the nurses gave him a purple popsicle in the recovery room. And wouldn't you know it, on an otherwise empty stomach, my son was refluxing purple popsicle as we left the hospital? ugh.

What it *is* linked to, we've noticed, is his activity level. A birthday party with a bouncy house is 100% sure to generate a lot of vomiting. Even a pillow fight with dad will get him going. Have any of you noticed a similar connection?

Thanks in advance for any replies, and sorry to be so verbose. lol ~kerry
Jan 17, 2009
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
When you have had endoscopies, have they taken biopsies to rule out conditions like EE? Have they ruled out Celiac disease?

I also had a lot of problems with reflux, and activity did make it worse. For a while, we thought I had exercise induced asthma, but really I was refluxing so badly when I exercised, I would aspirate and my lungs were "shutting down" and the asthma inhalers did not help - very scary.

After having a scope and Bravo last year, I was told I was refluxing severely, constantly, and even high doses of meds were not controlling it. I am not overweight or a smoker, and I had tried all meds - so I had the fundo surgery in August.

My children also have severe GERD (so does my dad!) and are on very high doses of PPI - my 4 year old is on 40mg Nexium and my 8yo is on 80mg of Nexium. Unless there is a cure or better meds on the horizon, I forsee fundo surgeries in their futures, too... but we are putting it off as long as we can. Our docs will not do the fundo unless they are not controlled w/ meds and are having *significant* symptoms - and for right now, they're doing ok, so we're kind of in a wait-and-see holding pattern. I hate all the meds, but the fundo is no piece of cake, either.

Jan 18, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
I think you are definitely doing all you can to avoid surgery as every parent wants to do. At some point though you have to consider two things quality of life now and quality of life in the future. At 6 he is probably past the chances that he is going to outgrow this any day. If he is still refluxing that many times a day it can't be that great of a quality of life. Even if he isn't complaining because he has always been that way it is probably still pretty painful. Unfortunately, there are risks with leaving uncontrolled reflux too especially when it is causing damage to the esphoagus. If left too long it can cause Barretts esphogus as I am sure you know.

My son had his fundo at 16 months because he constantly turned blue which was his body's way of protecting his airway from aspiration. He had severe damage on both of his scopes and no meds seemed to help him either. For us, it was the best decision we ever made for him and he has been a different child since. He is so much happier. Like you we thought he was fairly happy but he was a different child post fundo. His quality of life and ours was more then I could of asked for. Do your homework on the surgery and surgeons if you decide to do it but don't be scared away by all the negative stories out there. Your son is a good candidate because he doesn't have motility issues or allergies, doesn't have eating or weight issues and sounds more like a silent refluxer then a projectile vomiter. If you have any more questions about the actual surgery don't hesitate to ask.

Jan 18, 2009
ahousat
Lost my 33 yr old most physical fit husband 1 year ago, I miss him and his help! Feels so shitty and unfair. My baby getting better is the only thing that would bring my sanity back.
Hugs to you and yours. We had tried it all too, the last and only we never tried was Nexium and it has been the only one that made any difference. I am not sure that you have tried this or not already ... hopefully you will find something for him soon. Sorry wish I were more help, we are still going through all our Dr Drauma and testing as well at 28 months. Good luck and don't give up!
Jan 18, 2009
massfiasco

thanks for the replies!

To follow up on some of the questions here, he has been on Nexium (not at all effective). Also, he had the blood test for celiac's and it was negative. He has had biopsies with each scope, and so far, there is no sign of EE.

Maiam, I would love to hear about your experience with the Bravo capsule, as well as the fundo. And to those of you who have children who have had the surgery, can you tell me about the process? How was the recovery period? Are there eating issues post-surgery?

I have heard/read reports of success with eliminating milk, eliminating carbs, eating licorice, yadda yadda... did any of you try these steps before choosing the fundo? I am contemplating a trial of no milk to see how it goes...
Jan 19, 2009
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
8 years post fundo story
Hello! My daughter needed a fundo at 3 years but I waited until she was almost 6 years. She was aspirating, failure to thrive and asthmatic. I tried and tried to find a non surgery option. I finally agreed to surgery. It was a slow recovery and I questioned myself many times. She needed medication for another year or more and it took just as long to overcome the feeding problems. Now she is 14 years old and does not need any reflux medication. Her asthma is under control and she runs and exercises normally. The fundo has loosened quite a bit so she can burp (really loudly I might add!) and vomit. I have written quite a bit about the surgery, deciding to do the surgery and what to expect on my blog. I would be happy to answer any specific questions you might have. By the way, my daughter had many ups and downs during the recovery from the surgery and I have heard many parent stories both good and bad. It is a huge decision. Take care, Jan Gambino The Reflux Mom
Jan 19, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Sounds more like reflux than anything else....but, keep in mind some allergies can be the delayed type. The child will test NEGATIVE on blood/scratch test. The only way to tell is to withhold the food & look for improvement or sometimes through patch testing. We just had patch testing done at Children's Hospital in Phila. & found a problem with rice, peaches, corn, & potato. My son's allergies are severe, but I'm just sharing this because some people are unaware of this type of allergy. It might be worth withholding all dairy for a week or so & see if there is any difference. Did he take regular formula as an infant? Was he vomiting then? Do you or his father or family members have any type of history for allergies/asthma? Good Luck - I hope you can find some relief for your son. Ellen
Jan 20, 2009
massfiasco
update

Hi all,

We cancelled the scope for friday. This week is too crazy, plus my other two are sick and I'm missing too much work already. We are going to dabble with the diets and see what happens. I have also just heard of trying apple cider vinegar as a holistic cure, so maybe we'll try that too.

I think part of the reason I am so against the surgery is because he is an otherwise-normal child... no issues with food, no skin or breathing problems, and he is growing like crazy, and is now taller than his 7 year old friends.

blueleopard, you asked about him as a baby... i breastfed him and had to go off dairy for the whole first year because he screamed all the time and didn't sleep. when i tried adding dairy at 9 months, he had bloody, mucousy poop. So there is a history of him being sensitive to dairy, and I'm thinking that this is a good place to start. It's not too hard either, since I'm dairy-free again myself, for my third son.

We suspect he was refluxing as an infant, but I was unwilling to do the testing at that point. I have allergies and asthma, but no reflux. My husband's brother and father have reflux themselves, but it is controlled by medication.

thanks for the replies, everyone!
Jan 21, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Honestly, I think you hit the nail on the head - dairy. After hearing of your asthma/allergies & his history as an infant particularly. If you can, get this book from the library - "Is This Your Child" by Doris Rapp, M.D. She has chapters on reflux, the surgery you were contemplating, and undiagnosed milk allergies (probably because they are the delayed - onset type). Let us know how he does!!!!! Ellen
Feb 15, 2009
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
I hope you don't mind one more reply. My 6yr old is on Nexium 20mg twice a day, does well, but never very well until we added an asthma inhaler. He is on Flovent 110 two puffs a day. They never heard wheezing, but I noticed him getting worse around pollen, dust, fragrances, heat, humidity, you name it, all asthma triggers, it's made a bid difference. Was your son on high enough doses of the PPI's?
Check with your
doctor first!