We met with a pediatric surgeon today who is going to be running some more tests on Elana (she is 2.5 years old). Her major reflux symptom is constant wheezing. No matter how many breathing treatments she receives she always wheezes. The surgeon said if she hasnt outgrown reflux by now, she wont. He has suggested possible fundo surgery. I am very concerned about that diagnosis.

Elana never has had a problem eating or gaining weight or growing. She never chokes, gags or vomits when eating.

Has anyone had a chronic wheezer and had the fundo? What was the outcome?

I have never heard of that being a reason to do it...Did you see that doc at Children's?

We actually saw a pediatric surgeon at U of M b/c he specializes in finding esophegal fistulas. We want to rule that theory out. Elana is aspirating into her lungs and many of her doctors say she WILL eventually outgrow it. However, the surgeon doesn't think so.

From what I read about the fundo surgery, there are many negative side effects. I just don't think surgery is the right option for Elana. She is growing and thriving so well.

As with everyone else on this forum, I just wish the reflux would go away!!!!!

Well I hope for the best for you guys:)

And I am sure one of the mom's with fundo experience will chime in!

Evan has aspirated many times too, and we still deal with breathing problems on again and off again, but even with all of the weight gaining problems in the first few years of his life, never once was the fundo offerred. I'm not so sure I'd consider that option yet, but that's my personal opinion. It just seems premature.

I have three children that have had fundos done due to severe reflux and permanent damage being done. What I was wondering is your child having pneumonias due to the aspiratation? Is there permanent damage being done? The reason I ask this is that the fundo should only be a last resort and done when there is a life threatening problem or permanent damage being done to the child.

When the fundo is done there can be a new set of problems created that were not there before. I was wondering if your child has had a gastric emptying study done yet? If not have this done prior to surgery because if there are delays the fundo can make it much worse. Also if there are delays they could be causing the reflux to happen now.

Now for us my dd did great with the fundo but my two sons had severe complications. My oldest son still has a feeding tube and feeding issues five years later after his first fundo. He never had any problems with eating prior to the surgery. My other son had a feeding tube for three years but now does eat orally. He still has major gi issues that have not been fixed by the fundo.

I dont want to scare you but you must be sure that there is no other option out there. I know that the surgery was needed by my children but it was our last resort because there was nothing else that could be done. If I can pass anything on to you it is to go and get a second opion before you do anything and make sure that you have as much info available to you.

If you have any more questions please feel free to ask anytime. I do wish you luck.


Melanie

I want to echo what Melanie said. I also want to add a few thoughts:

1. Has she had a ph study that clearly indicated the relationship between the wheezing and the reflux episodes?

2. Have you confirmed that the aspiration occurs when she refluxes, and not when she swallows?

3. Has she had a bronchoscopy to explore other possible causes for the wheezing? Does she ever have stridor? A friend's son kept getting pushed to have a fundo due to severe breathing problems and the mom just felt it wasnt the issue. She kept pushing and after going to Cincinatti Childrens, they discovered he had a cleft larynx causing the aspiration, wheezing, and stridor problems. He had that corrected and did not need a fundo. The cleft was missed over and over by numerous hospitals. He did have significant reflux, but it was not the reflux causing the serious respiratory complications he was having.

My daughter had 2 and all and all she is well now. It is just a big gamble so my advice to you is to do what you can to be able to know with certainty that you are doing it for the right reason....and that the problem you are trying to remedy is one that is directly caused by reflux.

Let us know what happens!

Everyone has already said what I was going to say :smt047

Just wanted to add that my Eli had the surgery, he had chronic wheezing ant it is gone now, but.... he also had recurrent pneumonias that wouldn't go, low immune system which caused him to be sick with flus and colds most of his life up until surgery, aspirations, ear/nose/throat/sinus infections, and his body was so weak that he had fallen way behind developmentally and he just laid around with no energy.

For us the surgery was a success, because those symptoms are gone. but if you are doing it only to stop wheezing, I am almost !00% sure you will be disappointed, you will be trading that for difficulty eating, difficulty swallowing, loss of appetite, unable to vomit when needed (one flu could make another surgery possible), sour stomach, gas bloat syndrome (this hurts my son daily because he cannot burp from the fundo, and it is supposed to do this). There are more that are possible but these are givens.

Elana had a ph probe last year and it came back normal. She had a bronchoscopy and the doctor found bacteria in her lungs which means she is aspirating.

Next Thursday, Elana will have an esphagoscopy and rigid brochoscopy with biopsy to help provide us with some more answers.

My gut tells me no on the fundo and for now, I'm sticking with that decision. She is growing and developing beautifully. The fundo sounds like it will cause too many problems.

The doctor did suggest trying Reglen. Elana had a gastric emptying study and it took 15 minutes for her stomach to empty. Compared to what I've read on this board, that doesn't seem too long. I don't like the side effects of Reglen so I've held off.

I'm just trying to keep faith that she will outgrow this one day.

15 minutes sounds wonderful to me, our sons stomach was still full over an hour later...

Has she had a swallow study done? Do you know that she is aspirating contents from her stomach as opposed to aspirating contents while they are swallowed (like when drinking)? Has anything showed you that she aspirates when she refluxes? With a normal ph study, it is a pretty big gamble I think! I agree to find out everything you can before making the decision to do it or not. I also have heard of kids going on a jtube feeds only to avoid reflux/aspiration without a fundo. Maybe extreme for her, just wanted to mention it has been done.

I agree with the others. I think a second opinion is needed. Have you seen a pulmonologist??? What other testing has she had???

Elana has had the following tests done:

2 swallow studies - both normal
Upper GI - normal
Bronchoscopy - showed bacteria in her lungs which means she is aspirating (the dr. looked for a cleft larynx but everything appeared normal - no structual abnormalities)
Allergy testing - normal
Cystic Fibrosis test - negative
Immune deficiency study - negative
CT scan on lungs - normal

Elana had 1 pneumonia when she was 3 months old.

She's on her 2nd set of ear tubes. She does not have a speech delay or any developmental problems. She does not have a problem pooping and has never vomited due to reflux.

She is 2.5 years old and is 37.5 inches tall and weighs 32 pounds. She is a great eater and no food seems to bother her.

Hopefully the 2 tests that will be run on her in the next couple weeks will help shed some light.

Even when she's sick, her oxygen level was at 88 last month, she was running around the room. She is not a "sickly" child and I'm so frustrated that we can't figure out what is wrong with her.

Many people think that she has allergies which can contribute to the constant wheezing. However, her allergy test came back normal.

If anyone has any suggestions or insights, please pass them along!

After reading that, I seriously doubt that a fundo is what you need and in fact, don't really understand why they are suggesting it. If her tests came back normal and her weight is good then I just don't get it.

Thank goodness your a good mommy and have done some research on your own or you may have put your daughter threw a surgery that wouldn't benefit her but in fact give her more problems to deal with. Sadly, many parents do this trusting the docs.

I agree with Erin--not sure why they would go to such an extreme measure. Good Luck

About the Reglan....my experience on that med has been great.....Noah has no side effects from it. I know of another child who stayed hungry all the time. Maybe that's why Noah isn't getting better. Maybe the Reglan isn't working and that is why we aren't having side effects...

This fundo sounds terrible. I'm so frustrated. I'm like you because Noah is thriving...25 lbs at 12 months. He loves food and eating. He's a happy go lucky kid who is so good despite all of these problems. He barely cried after his adenoidectomy and ate full meals.....because he doesn't skip a meal! But on the other hand I'm worried about what will happen if we don't do the fundo with the breathing problems.

Good Luck!