Acid Reflux: Getting a Diagnosis (Our Story)
Our son has struggled with acid reflux for a very long time. At the age of nine months, he fell completely off the weight charts and by the age of two, he had difficulty swallowing food. Our pediatrician tried to convince us that the weight loss was a phase, and that he would soon begin eating again. Not convinced, we consulted his Ear, Nose, and Throat (ENT) doctor for a second opinion. Since he had a congenital hearing loss, his ENT was very attuned to his history and immediately referred him for some basic upper gastrointestinal testing. When the tests came back with “normal” results, we were rather stressed and at a loss for what could be causing his issues.
In the end, we were referred to a gastro-intestinal specialist (GI doctor) and an upper endoscopy with biopsy was performed, along with the placement of a 24 hour pH impedance probe. The results of the biopsy showed inflammation from chronic acid exposure, and the probe indicated severe acid reflux disease.
We finally had an answer, and started therapy with a proton-pump inhibitor medication (our son uses Nexium).
Certainly, most children have a more straight-forward diagnosis and more obvious symptoms: babies often arch their backs, have frequent vomiting, and may refuse to eat or cry frequently with pain. While our son refused food as he became a toddler, he had none of the “classic” signs of reflux! His primary signs were dysphagia (trouble swallowing), pulling at his neck, hiccups, coughing, and lack of growth.
Impedance Probe for Acid Reflux
Classic Signs of Reflux in Infants
- Difficulty gaining weight
- Excessive crying
- Arching of the back after eating
- Excessive vomiting*
- Frequent waking from sleep
*Not all children with reflux will vomit, as some children have "silent" reflux, which may manifest as respiratory symptoms, coughing, or gagging.
Failing Medical Therapy for Reflux
Our little guy started growing after we initiated medical treatment for his reflux. At first, 10mg of Nexium (once per day) was enough to keep his growth in line. The effects of the medication started to wane, so he was put on the same dose, but twice per day. This worked well, but the effects of the medication started to decrease and we saw a resurgence of the coughing and refusal to eat. At this point, his dose of Nexium was doubled to 20mg per day, twice per day. His ability to eat food improved, but we started noticing other problems.
His sleep was extremely disturbed, and he often coughed and choked. A sleep study was performed and he was found to have severe obstructive and central sleep apnea. The acid reflux was the cause of the respiratory problems, and further testing found that he had laryngomalacia. More pH probe tests were performed, and the tests showed that the Nexium was no longer controlling the reflux adequately. Our little boy was put on an additional medication (an acid-blocking medication called Zantac) and surgery was performed on his airway to prevent it from collapsing while he slept.
Unfortunately, even the Zantac and Nexium could not keep the acid reflux at bay. His stridor (a loud noise made when trying to inhale through an obstruction) reappeared and the sleep apnea was still present. Our son’s diagnosis was changed from Gastro-Esophageal Reflux Disease (GERD) to Laryngo-Pharyngeal Reflux Disease (LPR) reflux. LPR is a different form of reflux, and results when both the upper esophageal and lower esophageal sphincters malfunction. By contrast, typical GERD involves the malfunction of only the lower esophageal sphincter. With the upper sphincter malfunctioning, our son’s airways were exposed to his stomach acid.
At this point, our ENT doctor requested that our son be evaluated for the anti-reflux surgery, or Nissen Fundoplication.
What is a Nissen Fundoplication?
A Nissen Fundoplication is a procedure that creates a tighter junction between the esophagus and the stomach. The top portion of the stomach (the fundus) is wrapped (“plicated”) around the esophagus, and stitched in place. When food enters the stomach, the wrap prevents any food or stomach acid from going up the esophagus.
The surgery can be performed laprascopically, which means several “keyhole” incisions are made in the patient’s abdomen. The recovery is much faster for this type of surgery than for an open fundoplication. In certain circumstances, the surgery cannot be performed laprascopically and the surgery is converted to an “open” fundoplication. Open surgery requires a longer hospital stay and recovery time.
Anxiety about the Fundoplication Procedure
As his parents, we were concerned about putting our son through another surgery, particularly when the first two surgeries for his airway were not successful (the first, a tonsillectomy and adenoidectomy, and the second, a supraglottoplasty). Our son does not have a good track record with surgical interventions, so we were quite reluctant to consider the surgery in the first place.
We researched the procedure, and found that the surgery is considered a "last resort" in the attempt to treat acid reflux. It is reserved for life threatening reflux complications, or for children who are failing medical therapy and face life-long medication and significant problems from the effects of reflux.
The Nissen Fundoplication surgery has significant side effects, and there are some contra-indications to the surgery. The side effects we read about included:
- An inability to burp or vomit after the procedure.
- Some children retch uncontrollably after the surgery.
- Some children have trouble swallowing food after the surgery.
- Food may get “stuck” in the esophagus, causing choking.
- The fundoplication may come undone, requiring another surgery to redo the fundoplication.
- The fundoplication may “slip,” creating a hiatal hernia.
- Gas may build up in the stomach, causing a very painful condition called gas bloat.
We were also concerned about our son’s “motility,” since an earlier study had shown that his stomach emptied food too slowly. In children with delayed gastric emptying, problems like gas bloat can be increased after a fundoplication.
Great Resources for Deciding on a Nissen Fundoplication
- Anti-Reflux Surgery Outcomes
An article reviewing the outcomes for children undergoing Nissen Fundoplication: complications, side effects, and success rates are reviewed.
- Nissen fundoplication in children with profound neurologic disability. High risks and unmet goals.
Children with significant neurological problems often don't fare well with a Nissen Fundoplication. Peer reviewed study on the risks for children who have neurological complications.
- 10 Questions Every Parent Needs to Ask Before a Fundoplication
One of the best articles for parents on the web, Complex Child brings up several questions parents should ask before consenting to a fundoplication for their child.
Fundoplication: Frequently Asked Questions
Before Choosing a Fundoplication: Things to Try
Usually, a child is only referred for a Nissen Fundoplication when they have severe, uncontrollable reflux that is impacting the child’s health. In some areas of the country, however, fundoplications are performed at a rather high rate. For instance, some hospitals will routinely perform a Nissen whenever a G-tube is placed, whether reflux has been identified or not. It is important to ask the following questions before consenting to a Nissen Fundoplication:
- Does my child actually have reflux? Many disorders masquerade as acid reflux. Eosinophilic Esophagitis, motility disorders, and even food allergies may be mistaken for acid reflux. pH probe testing should be performed to confirm the presence of reflux prior to surgery.
- Does my child have neurological problems? Studies have shown that fundoplications are less effective for children who have pre-existing neurological problems, such as cerebral palsy and seizure disorders.
- If my child already has a G-tube and does not eat orally, has a G-J Tube been tried? Some children do not take food by mouth, and in those instances, a G-J tube can be placed. This delivers food directly to the small intestine and prevents reflux. This is obviously not an option for children who take food by mouth, but may be a good option for children with neurological problems who already receive enteral nutrition (formula fed directly into the stomach).
- Have all medical options been exhausted? There are many proton pump inhibitors, and they may be combined with acid blockers to increase effectiveness. In addition, motility drugs (including Reglan and Erythromycin) may be beneficial in reducing the amount of reflux, particularly for children with motility problems.
- Does my child have motility problems? Children with delayed gastric emptying are susceptible to problems like gas bloat, which may worsen when a fundoplication is performed. Esophageal motility problems are more worrisome, as swallowing can be more difficult after a fundoplication, and any existing esophageal motility problem could be worsened.
In other areas of the country, hospitals are loathe to perform the procedure, and children who truly need surgical intervention may struggle with severe side effects from the acid reflux. For children who have lung damage or difficulty maintaining a clear airway, a fundoplication is nearly always indicated.
Apnea and Reflux
Deciding Against the Surgery
Since we were able to keep our son’s weight up with the medications, we decided to see if we could treat his remaining symptom of sleep apnea with a less drastic measure. We consulted with a sleep neurologist and our four year old son was placed on C-Pap therapy, or continuous positive airway pressure, to keep his airways open at night. While the C-Pap would not stop the reflux from occurring, it might be able to treat the biggest symptom we had at the time, which was apnea caused by inflamed, floppy tissue near the voice box (laryngomalacia exacerbated by acid reflux). When using nasal masks, he developed congestion, so we switched to a full-face mask. With his breathing in check, we thought we had the reflux monster under control.
Uncontrolled LPR Reflux: Potential Effects
Cancer of the larynx (voice box)
Vocal cord nodules
Uncontrolled ear infections
Apparent Life Threating Events
Dysphagia (difficulty swallowing)
Back to Square One: Revisiting the Nissen Fundoplication
A few months passed after starting C-Pap therapy, and our son’s congestion continued to worsen. He also started choking when he drank fluids, which was a rather unwelcome development. He started getting ear infections that would last for 3-8 weeks, with ear tubes in place – antibiotics had little effect. His coughing increased, and our ENT doctor ordered a CT scan of his sinuses and cultures of his ears. The CT scan showed chronic sinusitis, induced by the acid reflux. The cultures of his ears showed a similar problem: Pepsin, a digestive fluid, was found in the infected material. Our son literally had stomach acid coming out of his ears, and the antibiotics couldn’t keep up with the amount of inflammation the acid was inducing.
Unfortunately, while the C-Pap effectively treats the sleep apnea, it also seems to worsen the effects of our son’s acid reflux. This time, we had little choice. With his larynx and lungs under attack, the potential side effects of a Nissen Fundoplication were less than the potential side effects from severe, uncontrolled airway reflux.
Hoarse Voice Caused by LPR Reflux
Damage Caused by Reflux
The LPR form of reflux (also known as extra-esophageal or "silent" reflux) has several negative effects on the airway. Our four year old son often has a hoarse voice. This is caused by acid damage to the vocal cords.
A Visit with the Pediatric Surgeon
At the age of four-and-a-half, we reluctantly booked an appointment with a pediatric surgeon. At the appointment we voiced our concerns about the possible side effects of the surgery.
He reassured us that his patients are often able to burp and even vomit once the healing process is complete, though it may be impossible during the recovery time right after surgery.
While we were concerned about our son’s delayed gastric emptying, he assured us that many times, the scans show a “false” delayed emptying time, because when food refluxes up the esophagus, it can appear as if it is taking longer to empty out into the intestines. Once the fundoplication prevents the food from going up, it tends to empty out the bottom much faster.
Since our son uses a C-Pap to breathe at night, a gastrostomy tube (G-tube) would be placed at the same time as the reflux surgery. This way, if air became trapped in his stomach, we could vent the trapped air before it became painful. Once he had fully healed from the surgery, the G-tube could be removed if he no longer needed it.
While we weren't thrilled with the idea of placing a G-tube, we did agree that it would be a good comfort measure, and we were reassured that it could be removed once healing was completed.
We were quite relieved by the information given to us by the surgeon, so we agreed to sign the consent form for the surgery. The surgeon was a tad concerned by the various other medical problems our son has had in the past, however, so he held off scheduling a date for the surgery until he could review all of his medical history and scans.
Medical Tests Performed Prior to Fundoplication
- Upper GI Barium (X-Ray), to verify normal anatomy and to rule out the presence of hiatal hernia or intestinal malrotation.
- Gastric Emptying Scintiscan, to determine if delayed gastric emptying is present.
- 24 Hour pH Impedance Probe, to verify and quantify the amount of reflux present.
- Esophageal and Antro-duodenal Manometry (rarely performed)- these tests are the “gold standard” for motility testing and can determine if motility problems are present, and whether they are due to muscular or nervous system dysfunction. For most children undergoing fundoplication surgery, these tests are not necessary.
Reflux Surgery Called Off
After going for a ride on the roller-coaster of major, life-altering decisions, it felt good to have this decision made. The reflux surgery would fix his problems with his airway and choking, and possibly even his gastric emptying time. He may even be able to discontinue his medications, and go on to have a typical childhood, free from stomach issues. I started to dream of a day when the reflux nightmare was entirely in our past.
A few days later, our phone rang. It was early evening when the pediatric surgeon called, putting the entire surgery on hold. As it turns out, our son’s delayed emptying looked like true gastroparesis, and not an artificial result as the result of reflux. There were some worrying signs on his other tests (esophageal biopsy and some possible esophageal motility problems), so the surgeon called a halt to the surgical procedure.
We were back on the roller coaster of indecision again. The surgeon requested more medical files and consulted with the Gastro-Intestinal (GI) team at the hospital. Since our son’s airway is involved, a Nissen Fundoplication was still in the cards, but other problems had to be ruled out prior to the surgery.
Treating Reflux: A Poll
The Surgery is Scheduled
The surgeon received the rest of our son's medical records, including his pH probe monitoring results and his esophageal biopsy pathology report. Within days, he called to inform us that the pathology report showed something known as Barrett's Esophagus. This is a precancerous condition that is rarely found in adults, and is almost unheard of in children. The presence of the dysplastic cells in our son's esophagus made the decision clear: our son would have the Nissen Fundoplication performed, along with another esophageal biopsy. If the presence of the dysplastic cells persists, he will have serial biopsies to monitor the condition.
His surgery is currently scheduled for March 2012. Despite the concern for motility problems, the surgery must be performed. Preventing esophageal cancer from forming in our son's future is the ultimate goal.
Leah Lefler (author) from Western New York on March 04, 2012:
Thanks, Heather. We're going up to Rochester on Tuesday, the night before surgery. They're placing a mic-key at the same time. I'm sick with worry, and you know the stress of trying to keep a little one well before surgery. Nolan hasn't needed a trache, thankfully, and manages on a C-Pap at night. Still, his airway issues just get worse and worse with the reflux. The effect of airway reflux is absolutely insane! He's having surgery this coming Wednesday (March 7).
Heather on March 04, 2012:
My son had a nissen when he was 8 weeks old because of airway issues. His reflux was so severe that he ended up with a tracheostomy. He is 18 months now and still has a trach and g-tube, however, during the last ph probe his reflux is under control. We hated the idea also, but it hasn't been quite as bad as I imagined. He is able to burb and vomit when he needs to. Hang in there, I know how tough it is! You're doing a great job advocating for your son, you're asking all the right questions. He's a lucky guy :)
Leah Lefler (author) from Western New York on January 25, 2012:
Thanks, Trish. It's an exhausting process!
Tricia Mason from The English Midlands on January 25, 2012:
I wish you all the very best with this :)
Leah Lefler (author) from Western New York on January 25, 2012:
The vast majority of children have uncomplicated GERD and grow out of it by the age of two. The fundoplication surgery is really a "last resort" since the side effects can be very difficult. I am VERY glad that your daughter outgrew it by the age of two! The Complex Child article has "10 questions to ask" and one of the questions is, "Is your child under the age of two?" For most kids under two years old, the reflux will simply be outgrown and doing a permanent, surgical procedure may not be the best option (kids with respiratory complications excepted - they nearly always require a fundoplication to prevent lung damage). Children who still have severe reflux after the age of four years old are likely to have a life-long, chronic disease process and will be on anti-reflux meds for the rest of their lives. We were very happy with the medications initially, because they worked very well in the beginning. The efficacy seems to have waned, though, and we aren't bringing down the acidity even with higher and higher doses of the medications.
Max Dalton from Greater St. Louis, Missouri on January 25, 2012:
This caught my eye because our daughter had acid reflux as a baby. Thankfully, she's grown out of it, but we did consult the docs about looking into an operation but they said it wasn't that severe.
Keep up the good work.
Leah Lefler (author) from Western New York on January 25, 2012:
A Nissen is definitely not advised except for in the most serious cases. Often times, parents have one advised when a child is getting a g-tube, as a matter of course - even when the child has no reflux! Unfortunately, our son has respiratory complications and lung damage is irreversible, so it is likely that we will proceed with the fundoplication. The motility issues are really causing some problems, and we're waiting for the surgeon to call back with the next step. We'll probably have to redo the gastric emptying scan and possibly do manometry (I hate to put Nolan through that test, but it would be better to verify that his esophageal motility is OK before agreeing to a fundoplication).
In our case, if a fundoplication isn't possible, the other option is doing a G-J tube and discontinuing oral eating entirely, which is a much worse option for the little guy.
For kids with airway reflux, the medication can reduce the acidity, but it doesn't actually stop the reflux. The pepsin in the reflux causes damage, too, so even if you can heal the esophagitis caused by the reflux, the airway symptoms will persist.
The efficacy of a fundoplication has a lot to do with the skill of the surgeon - the trick is in making the wrap tight enough to control the reflux, but not so tight as to cause problems with vomiting when sick, etc. Our surgeon has a very good success rate with children, and said they can vomit and burp after they have healed (3-6 months or so). Fundoplications should never be taken lightly, and I do think our surgeon is amazing for taking a step back and looking at the bigger picture, particularly since our little boy is medically complex.
Tricia Mason from The English Midlands on January 25, 2012:
Hello Leahlefler :)
This sounds like a nightmare. I really feel for you.
Both acid reflux and sleep apnoea are problems affecting my family, too, so I understand your concerns.
However, though I, myself, have always suffered with reflux problems, I never had such severe symptoms, especially not as a young child.
It must be awful for you and your family to go through this.
I can see that you already have a lot to think about, but I'll just add a few comments ~ things that I have had to think about, re my own and my family's health ~ and which may be useful to you, as you make decisions.
When my son was a child, he was sick a lot and his consultant mentioned the operation that you describe, but he warned me against it in very strong terms. Apparently, he knew of a child, who had had this done, but, because he could not vomit thereafter, his stomach had burst when he had a stomach ailment. He decided that the concerns, in this case, outweighed the benefits.
On the other hand, I know an adult, who has had the surgery and feels much better for it.
And I know of someone else, who eventually developed emphysema, apparently as a result of long-term acid reflux ~ where the acid was entering her lungs.
And I have read that it has been suggested that acid reflux may sometimes cause esophageal cancer.
Acid reflux is clearly a serious matter and a difficult one to deal with. Even the medication, which alleviates the acid effects can, I have been told, make matters worse, long term.
I hope that, with medical help, you will be able to sort out the best thing to do ~ and I wish you luck and good health for your son. :)