Reproduced with the permission of P.A.G.E.R. – Pediatric Adolescent Gastroesophageal Reflux Association Inc. PO Box 486, Buckeystown, MD 21717, USA. Website: www.reflux.org
Membership dues are $25.00 US dollars per year + an additional $15.00 for personal cheques (bank cheques avoid this additional charge). Membership includes subscription to the Reflux Digest.
WHAT ABOUT ANTI-REFLUX SURGERY?
Welcome to the first in a series of conundrum issues. The dictionary defines a conundrum as a question that has as its answer another question. A pretty appropriate word for a medical condition in which there are no cures, only a number of imperfect treatments and few occasions where the choice is obvious. As we said in the last newsletter, GER is a mystery disease in the what-do-we-do-about-it sense. A conundrum condition.
As we prepared to do this issue, the stack of articles on surgery that Joel gathered was impressive. No doubt, somewhere within it there are some good answers. But the more we examined our original plan to bring you a fabulous, up-to-the-minute description of all the anti-reflux surgeries, the more we realized what an impossible task this was. Our understanding of GER has changed dramatically in the past four years and the pace seems to be picking up. A thorough update on surgery would be outdated before you received it. (Not that we have the staff to write one – this took 2 1/2 months!) This issue of the Reflux Digest does give you some basic information on anti-reflux surgery but we have tried to concentrate more on how a parent makes a decision about surgery. A tough assignment but Caroline did a great job!
BASIC FACTS ABOUT SURGERY
When Beth first asked me to write for the surgery issue, my initial response was very positive. I welcomed the chance to inform you, our members, about the very viable option of fundoplication; the life-saving potential, as well as the important negative complications that can occur post-operatively. As I read through the journal articles and drew on my family’s two experiences with fundoplication, my response changed somewhat. I faced the great challenge to educate and inform you about the surgery, yet not alarm or persuade you one way or another regarding fundoplication. You, your family, and team of physicians need to make the choice that is right for your child. One must remember that there is no perfect surgery for reflux just as there is no perfect medication, and while it may be the only choice many of us have, we need to understand that this is not a cure.
“One must appreciate the scope and magnitude of this condition. ” What a great sentence about such a complicated and frustrating disorder/disease. One I hope every family and physician remembers!
WHAT IS ANTI-REFLUX SURGERY?
Fundoplication is the most common type of anti-reflux surgery and appears to be the only one currently done on children. The goal of anti-reflux surgery is to keeping food and acid from backwashing by using the muscles of the upper portion of the stomach (fundus) to help the sphincter between the stomach and esophagus (lower esophageal sphincter or LES) work better. The fundus is wrapped around the bottom few centimeters of the esophagus so that the contraction of the stomach muscles squeezes the LES just enough to keep it closed most of the time but still allow swallowing and belching.
The most important thing to remember is that surgery is a mechanical way to suppress symptoms of a disorder that is seldom mechanical in nature. Pharmacotherapy is also primarily an attempt to suppress symptoms. Neither is a “cure.” Both have side effects / complications but so does uncontrolled reflux.
The Nissen version of the fundoplication (shown above) has been performed since the 1960’s and more is known about its effectiveness than about newer techniques. The Nissen wrap involves bringing the fundus full circle around the esophagus (360 ) from the back (posterior) and stitching in the front. Other techniques are variations involving: wrapping less than 360 ; how much the stomach is pulled up and how much of the esophagus it covers; whether the stomach is fully or partially loosened from surrounding tissue (mobilized); precisely how damage to nerves is prevented; whether a tube is inserted into the esophagus to prevent over tightening of the wrap; whether the surgeon proceeds clockwise or counter clockwise; ad nauseam.
“Laparoscopic fundoplication” does not refer to the type of fundoplication but the type of incision made to access the stomach. In this technique a number of very small incisions are made in the abdomen and a fiber optic camera is used along with other special instruments. The smaller incisions drastically decrease hospitalization time because the incisions heal quicker. The actual surgery takes longer and is obviously a bit trickier to learn but many surgeons and patients prefer it. It is not clear whether total recovery time is shorter.
HOW COMMON IS FUNDOPLICATION SURGERY?
Anti-reflux surgery is the third most common surgical procedure performed on kids. Inguinal hernia repair, and central venous catheter placement are more common. GER, however, not the only reason a fundoplication is performed. It is done in conjunction with repairs of birth defects of the esophagus, after placement of a g-tube and it is more common in patients who also have other serious medical problems.
HAVE THERE BEEN FLUCTUATIONS IN THE POPULARITY OF FUNDOPLICATIONS?
Improvements in any treatment can lead to a pendulum swing in favor of that treatment just as studies highlighting problems can provoke a swing away from a given treatment. Recent studies about the efficacy of medications may be provoking a trend toward surgery. A few surgeons are also questioning whether the results of surgery would be better if the patients choosing surgery were not already in such bad shape – certain technical variations can’t be performed if the damage is too great. A valid question.
There are other anti-reflux procedures that are not often performed on kids. The Angelchik prosthesis is a silicone collar that is placed around the LES. Problems with them migrating and puncturing organs seems to be overshadowing any positive traits.
WHAT ARE SOME INDICATIONS FOR ANTI-REFLUX SURGERY?
The decision to consider surgery is usually made if one or more of the following conditions is present:
Esophagitis – mild to severe damage to esophagus.
Apnea / Apparent-Life-Threatening-Event – cessation of breathing, possibly as a reaction to refluxate threatening the airway. An overly aggressive protection instinct can result in a spasm of the airway (laryngospasm / obstructive apnea).
Failure to thrive – failure to gain or maintain weight can eventually lead to developmental problems or compromise overall health.
Pneumonia / Asthma – aspiration of acid or acid vapors. May be a crisis situation if medication is not quickly effective.
Airway Damage – from acid exposure. Lung problems are not always audible with a stethoscope. Nasal polyps and vocal cord nodules are not always recognized as possible symptoms of GER.
Strictures – scaring of the esophagus. Often narrows the opening and interferes with swallowing. Often recurs even when GER is controlled by meds or surgery.
Barrett’s Esophagus – precancerous changes in the esophageal tissue. May not be as rare in children as previously assumed. It is not clear whether a fundoplication will reverse or stop the changes.
Quality of Life Issues – pain that interferes with daily activities.
G-tube – surgically placed port for introducing food through the abdominal wall. Children who have one often develop reflux. This may be because the stomach is unable to move. New tube styles may help.
WHEN SHOULD SURGERY BE CONSIDERED?
The criteria for determining whether a child is a candidate for surgery are not set in stone. There are a number of questions that parents should discuss with their primary care doctor and all specialists.
? Is the GER causing damage that may not be reversible?
? Is the GER causing life threatening symptoms?
? Is this a crisis or is there time to explore options?
? Are symptoms not adequately controlled by medications?
? Do symptoms recur when medication is withdrawn?
? Have all medications and combinations been thoroughly explored?
? What is known at the present time about the long-term affects of medications?
? How does this compare with current concerns about uncontrolled, chronic reflux?
? Does full compliance with positioning and feeding techniques make a difference?
? Have helpful techniques been applied consistently?
? Is the child young enough that the GER can still be expected to resolve?
? In the parents’ opinion, is the pain experienced by the child impacting on his quality of life?
? Is tube feeding a medical option and practical option?
? Has testing shown GER or the symptoms of GER?
? Have there been contradictory tests?
? Have any tests been suggestive of another medical problem?
? Have other conditions that cause GER symptoms been fully ruled out? (We will be addressing this in a later issue of Reflux Digest.)
Children with other serious medical disorders often have GER. Unfortunately, they are less likely to respond to medications and experience a much higher rate of serious complications with medicines, anesthesia, and surgery. Many of these kids are hospitalized on multiple occasions and compromised nutrition can be a complicating factor.
Children with digestive system abnormalities, cystic fibrosis, pulmonary disease, genetic disorders, neurologic disorders, seizures, muscular disorders, cyclic vomiting, allergies, conditions requiring supine or head down positioning, and kids with unusual posture (scoliosis, body casts etc) are all at risk for reflux and often difficult to treat.
? If the child has other medical issues, have you fully investigated the impact on all of the available options?
WHEN IS SURGERY CONTRAINDICATED?
Children with delayed emptying or motility disorders are not good candidates for fundoplications. Fundoplication alone is not done on children with swallowing disorders because the food will not move into the stomach.
WHAT TESTS SHOULD BE PERFORMED PRIOR TO SURGERY?
Sometimes several tests are needed to make this critical decision.
Barium swallow or upper g.i. – contrast x-ray done to rule out anatomical problems like large scars or a rotated stomach. If done on videotape with an experienced radiologist or speech therapist, it can diagnose ineffective swallowing which is a contraindication for anti-reflux surgery. A longer duration test can show delayed emptying.
Endoscopy / Esophagoscopy / with biopsy – fiber optic camera allows visualization of the esophagus. Some damage is visible with an endoscope but biopsies (tissue samples) can reveal microscopic damage. Incapacitating pain without severe damage may still warrant surgery.
pH monitoring – esophageal acid measurement continues to be the “gold standard” for diagnosing reflux. The major drawback is that a “positive” test reflects the number of events but even an isolated reflux event can cause life-threatening problems. Events immediately after meals or acid mixed with bile (alkaline) does not register but can cause significant damage. Conversely, high acid levels don’t always cause damage. Portable machines are preferable because no hospitalization is required and they show more about reflux in real life conditions.
Scintigraphy / Milk Scan / Gastric Emptying study – uses a radio isotope to track how long food remains in the stomach and whether it enters the airway. Suspected or confirmed motility disorders are reasons to decide against surgery. A very traumatic test. Diagnosis of delayed emptying means other options or simultaneous stretching of the pylorus at the bottom of the stomach (pyloroplasty) need to be discussed.
Manometry – measures the pressure of the sphincter areas and the effectiveness and coordination of peristaltic action that moves food the correct direction. Still mostly a research tool.
Allergy testing – neither traditional or nor non-traditional testing are recommended very often by the experts but it is strongly suggested by many of our parents. [See the letter by Cathy Evans below.]
HOW EFFECTIVE IS SURGERY?
This is a difficult question for anybody to answer. It is measured differently by different researchers. Whether or not refluxing is totally stopped can’t be known for sure because only those patients with significant symptoms after surgery are retested. Many patients do not answer follow-up questionnaires. Whether or not the original symptoms subside seems to depend somewhat on how severe they were, which symptoms they were, and whether there were coexisting medical problems. Many studies compare the outcomes of specific surgical techniques but this also influenced by the surgeon’s skill and experience with the particular technique. An individual surgeon’s success rate also depends on the ratio of low risk and high risk patients he or she takes.
The percentages vary drastically depending upon the specific studies you read and how healthy the group was:
A ” successful result ” or complete cessation of symptoms gets percentages from the mid 50’s to upper 80’s with most studies reporting numbers in the higher part of this range.
A” good result ” or a substantial improvement in symptoms is reported at about 10-20% of the time.
A ” poor result” is variously defined as “minimal or no improvement in symptoms,” “worsening of symptoms,” “occurrence of new symptoms,” or “disruption of the wrap.” This gets from 0-15% overall but special populations have high much rates of poor results.
The re-do rate is 0-15% for disruption of the wrap.
Keep in mind that a child with multiple illnesses that contracts pneumonia twice in the follow period may negatively affect the statistics yet that child may have had more cases of pneumonia or died without surgery.
None of these address parents’ most burning questions because very few studies compare surgery to medical management. The effectiveness of medications is not as good as we would wish, and some new studies of long-term results are depressing. The likelihood of a good outcome for your child is something to discuss with your child’s doctors.
WHAT ARE THE COMPLICATIONS OF ANTI-REFLUX SURGERY?
Every case varies, but aside from the usual surgical risks of anesthesia, infection and accidental damage to the tissues, some complications may include:
Small bowel obstruction – scar tissue adhesions form in the abdominal cavity as a result of many surgeries. For some reason adhesions are more common after any anti-reflux procedure and if they block the passage of food through the intestines it can require emergency surgery. The “typical” symptom of an obstruction, vomiting, may not happen after a fundoplication so patients and families need to know what else to watch for. Any signs of an obstruction need to be investigated immediately. Adhesions glue parts of the body together that are supposed to be separated and can be responsible for pain that is perceived in the left shoulder and other odd sensations.
Disruption of fundoplication – the stitches come undone and the stomach returns to previous position. Most reports in the literature involve falls and other accidents. Some parents report that a good case of the stomach flu or food poisoning will cause retching violent enough to pop the wrap.
Hiatus Hernia – the junction of the esophagus and stomach slides through the diaphragm into the chest cavity. Lately, more care is being taken to anchor everything securely and minimize the size of the opening in the diaphragm separating the abdominal cavity from the chest.
Stricture – scarring and narrowing of esophagus. Most often this is a recurrence of a scar present before surgery. Even stopping acid exposure totally doesn’t always prevent a recurrence.
Obstruction at fundoplication – esophageal motility is present but the food can’t pass into the stomach
Delayed gastric emptying – the stomach may be slower than before at sending food to the intestines or a delay that was not a big issue before can be come a real problem. Pyloroplasty promotes faster emptying.
Dumping syndrome – rapid emptying of the stomach causes symptoms including severe nausea, abdominal cramping, retching, pale skin, and sweating. Diet changes may help. Routine pyloroplasty is not favored because dumping may occur.
Failure to eat solid meals – liquids and foods are introduced slowly after the surgery. Certain foods may not be tolerated. A naso-gastric tube may be placed to enable a slow drip of formula into the stomach or IV nutrition may be used. Both fear of choking and current pain may be problems .
Gas bloat – inability to belch means gas must travel the length of the intestines.
Retching – “dry heaves.” One parent described as “watching an invisible bully punch your kid in the stomach – repeatedly.”
Dysphagia – esophageal motility is diminished and swallowing is affected. Great care is taken when working near the nerves that control swallowing. Low motility and a new wrap means food gets stuck in the esophagus. This had been more commonly reported with laparoscopic procedures and techniques are being modified accordingly.
Tube feeding dependence – if children are fed by tube after surgery, it can be difficult to convince them to resume eating. (See letter from Mary Gillman below.)
Understanding GER and all of the medical options and home care techniques is critically important to deciding whether to do surgery. We strongly encourage parents to read articles about GER but articles on surgery may not be appropriate. Most articles about surgery are comparisons of techniques but the parents are not the ones to chose the technique.
One article from a surgery journal is fairly easy to read and puts surgery in the broader context of all treatments. Unlike some articles in surgery journals it is not pro-surgery but neither is it anti-surgery. Charles Bagwell, “Gastroesophageal Reflux in Children,” Surgery Annual, vol 27, 1995, pp 133-163.
If you have a really strong stomach, you can get all the gory details ( right down to which hand the surgeon should use to perform each step of a fundoplication) in “Laparoscopic Anti-Reflux Surgery,” by McKernan and Champion in The American Surgeon, vol 61, pp 530-36, 1995.
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Please note, from this article that raising the head of the bed to reduce gastro-oesophageal reflux is NOT recommended and is shown to be ineffective.
I will edit http://www.cryingoverspiltmilk.co.nz as soon as I am able to.
I'm hoping someone here can share their experience with me as I'm at my wits end. My daughter is nearly 11 months old and has had chronic vomiting since she was about 5-6 months old (full feed vomits till there was nothing left, gagging, up to 9 times in 24hrs). After no doctors taking me seriously, and seeing 3 different doctors we finally got a barium swallow test done after taking her to the hospital out of desperation and it showed that she has severe reflux. I have accidentally eliminated gluten which has helped immensely but we still get 2-3 vomits a day. I'm waiting to hear from a paediatric doctor at the hospital for a follow up after the test but I'm just curious if anyone else has experienced this and what eventually helped? Or was it a case of managing it until they grow out of it? She was given liquid omeprazole a week ago but that only made it worse so i stopped giving it to her. Thanks in advance x
My sons 3 months, we've been in hospital his whole life but hoping to go home in next couple of days. He has liquad omeprozol via NG, i've heard that you have to pick it up from the pharmacy really reguarly be because once made up it looses it effectiveness quickly. How often do i need to get it made up?
This may need adapting a bit for infants and of course remember to think about allergens but some great advice: http://www.drlibby.com/stress/nutrients-herbs-help-children-calm-relaxed/?utm_campaign=December+Newsletter&utm_content=control&utm_medium=email&utm_source=vero&utm_term=Newsletter&vero_conv=365086097
So often I hear parents exclaim that their children are wired and hyperactive, and it is usually late afternoon when parents are trying to run errands, cook dinner or get home from after-school activities. Quickly, wired children become grizzly and tired. Parents know the difference between when the…
can I please be added to the laryngomalacia page
My 7 week old has reflux. We went to see the paediatrician yesterday and he gave us Pepti Jr to try. Im dairy free as still partially breast feeding. He also prescribed neocate as a back up. Just wondering on anyone's thoughts about pepti jr as have heard alot of people haven't had any luck on it.
Help please. Our 4 month old suffers from silent reflux, he's been on omeprazole for 2 months now. Initially we saw significant improvement (different baby!). Unfortunately, things have really started to plateau (worsen) over the last week. We have had 3 consecutive nights of holding him right throughout the entire night. Any attempt to move him from being held completely upright see's him wake within seconds and start screaming in pain. It's harrowing. We have been advised by our Dr to increase his dose to (20mg) he's currently on (15mg). I'm really concerned as I feel there's going to be nowhere left to go if he doesn't grow out of the reflux soon :( Has anyone switched medicine from omeprazole to something else with good results? Can anyone please recommend a good paediatrician in the Auckland area who specialises in reflux? We're feeling a bit gutted in this household as we thought things were under control but definitely not the case at the moment :(
Just for some fun. We can all relate to parts of this.
These busy moms take some time out of their schedule and create a parody of Taylor Swift’s "Blank Space" that will have every mom relating to the sleepless nights and the need for caffeine the next day to keep going. All in good fun, these three moms from "WhatsUpMoms" will have you laughing at thei…
December 2014 Newsletter - It is on its way out to members.
If you are on the old Yahoo Mailing List it has been emailed earlier this afternoon, but sometimes gets marked as spam so check your spam/junk folders for it if it hasn't arrived.
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If you should have received one and don't by tomorrow, please contact us.
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Gastric Reflux Support Network NZ for Parents of Infants & Children Charitable Trust Membership & Confidentiality Agreement Form / Newsletter Admin Page First Name Last name Email Street Address City/Town Area Postcode Do you live in NZ? Country and Area if not NZ Home Phone (include area code) Part…
Help please! Miss 7mths was finally diagnosed with reflux 2wks ago. She was pretty god during the day, no spilling anymore, crying occasionally with what I thought was wind but must have been acid, worst was getting her settled at night, took a couple of hours. We started on Gaviscon and it was great the first few days, except neither Dr nor chemist told me of constipation side effect (still not sure if we have her constipation sorted). So last Friday saw the Dr and got omeprazole, at first it helped but have found I still have to give gaviscon at bedtime breastfeed otherwise she won't settle. Now I am concerned as I just saw on the forum a post about omeprazole in suspension not being as effective and this is what we have. Also saw the comment about giving it with milk so it isn't affected by stomach acid. Chemist told me to give it 1/2hr before her first breastfeed of the day, I usually manage to give it 15-30min prior to feed. Finding I still can't give her a breastfeed or water too close to a sleep otherwise she wakes crying (usually wakes and just chats to herself) after about 30-45min, this is worrying me with this Auckland heat and humidity that she isn't having fluids often enough during the day. Maybe this is still happening due to Omeprazole not working properly?
Now I don't know what to do. I am not looking for medical advice as such but I don't know if I can believe the advice of the Dr and Chemist who don't seem to be very knowledgeable about reflux. Do I still give it suspension or ask for granules? Suspension with a feed or before? My other 3 kids didn't have reflux and I am feeling very lost
Has anyone's baby got worse with their reflux after taking Ompremazole?It seems my wee grand daughter is.Any answers would be grateful.Thank you
Hi Moms out there! I am in South Africa and my little girl has just turned 2 years last week!
She was diagnosed with silent reflux about 7 months ago and is currently on Zantac. I am at wits end.. still wakes up three times a night and just can't deal right now. We feel like zombies since the day she was born. We must sound like terrible parents but the lack of sleep is unbearable and the sleepless nights are relentless. She is now eating only gluten free food but there has been no difference
. Are there any parents out there experiencing the same thing... i am just so heart broken for my little angel! thank you
Time for a cuppa chamomile tea and a gingerbread star...whilst I work.
What are you doing today?
Help! How long does omeprazole take to kick in? I thought I saw on here someone say that they had to use gaviscon till it started working but the pharmacist told me it should work straight away. Yesterday was miss 7mths 2nd day of omeprazole and no gaviscon and we had a terrible night last night, she was hard to settle and didn't sleep well. At 2am I gave her gaviscon and she slept about 3-4hrs which was blast nights longest stretch. Just wondering if the omeprazole isn't working at its full potential yet. Thanks heaps
Does anyone have a child with laryngeophyrangeal reflux? My son was diagnosed a few months ago and has been on treatment with amazing results (thank goodness). Im just wondering if there is anything else I can do for him, and also if there is an average age they grow out of it. He is 20 months now. Thankyou
Gastric Reflux Support Network's page has got much busier and there are more posts to the page.
Thanks to everyone who keeps on answering. I can't keep up, but it is wonderful to see everyone coming here for support.
Roslyn, National Coordinator.
Has anyone used goats formula on their wee one with a dairy allergy? Am starting my twins on it today as one has dairy allergy and am exhausted from breast feeding so going to do a couple of bottle feeds per day
Hello. I read on the website that it recommends the NUK brown rubber teat pacifier. Does anyone know why in particular and where to purchase? Thanks.
A question on giving up dairy for relux please...
Do you need to go 100% dairy free or does cutting back help? I drink ALOT of milk (ill go through nearly 4 litres a week, bit excessive). Can I still have milk in tea/a small amount of cheese etc, or do i need to go 100 % cold turkey?
My daughter is 2.5 weeks old and is doing alot of regurgitating, back arching/night crying, has acid smelling breath, gets frequent hiccups, coughs and gags alot and cries every time I lay her down. Shall I book a GP visit ASAP? What is usually the first treatment they try?
Many thanks :)
http://www.cryingoverspiltmilk.co.nz/new-baby-on-the-way-taking-probiotics/ - New story from one of our Kiwi Health, Pregnancy and Parenting Forum users. Nice to have positive stories.
Well I thought I would update you all on our baby. She was born on 24th August, the day before her due date and on my birthday. I was taking 3 x 2 caps of Probiotics per day in the last month of pregnancy which can seem excessive, but as I can’t overdose on them and I only get one chance...
Are there any breastfeeding Mums out there? My little girl is about to turn 7mths and has finally been diagnosed with silent reflux (alot of people dismissed me when I suggested it months ago). We have started on Gaviscon sachets nearly 48hrs ago and she is much better especially at settling in the evening. She is usually OK at night so haven't given her the powder when she wakes at night yet. Any tips on how to use at night? I have been mixing it up and syringing it into her mouth. Packet says not to make up in advance but I wondered if I could for nighttime so I don't have to make it up when she wakes. Thanks
Anyone else dealing with older children with reflux would love to hear from you my Miss 11 year old seems to be having a relapse . So after nearly 4 years losec free in this household we have it back.
There have been some new posts - sorry I haven't had a chance to pop on over and answer. Can anyone share their experiences? Remember, no medical advice. :-)
As per my post yesterday, our membership form and newsletter archive for members is now available again.
Please consider joining Gastric Reflux Support Network NZ for Parents of Infants and Children Charitable Trust for access to our Newsletters and Private Local and National Support Networks: http://www.reflux.cryingoverspiltmilk.co.nz/grsnnz-membership-confidentiality-agreement-form/ Membership is free, and this gives you opportunities to discuss gastric reflux related issues with others in a safe and confidential setting.
Thanks to one of our amazing webhosts http://www.webmad.co.nz/ for the smooth change-over.
Gastric Reflux Support Network NZ for Parents of Infants & Children Charitable Trust Membership & Confidentiality Agreement Form / Newsletter Admin Page First Name Last name Email Street Address City/Town Area Postcode Do you live in NZ? Country and Area if not NZ Home Phone (include area code) Part…