The information provided on Crying Over Spilt Milk is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician.
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 A thorough update on surgery would be outdated before you received it.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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Click on this to view the page – Ask the Doctors
Gastric Reflux Support Network NZ shared Linkage's photo.
Thank you Linkage!
Something to live by....
Hi I have an 8 week old prem (6 weeks early so 2 weeks corrected) suffering from reflux. She is exclusively breastfeed and the dr has prescribed gaviscon. I am having real difficulty in getting her to take it. I have tried syringing it and also tried to feed via a bottle (she had never had a bottle for anything before) but she is just refusing it or spitting it back out. Does anybody have any tips for getting bubs to take the medicine?
Gastric Reflux Support Network NZ shared Plunket New Zealand's event.
There might be some of you who are interested in joining Plunket's Chat on Toddler Sleep. Please head over to Plunket's Event.
Join our PlunketLine nurse Carla for our 'Toddler Sleep' chat on Wednesday the 26th of August from 8-9pm. Post any questions you have below or private message us and we'll be sure to answer your question during our chat. The chat will take place on our timeline with a 'chat open' post at 8pm.
Wow yesterday Gastric Reflux Support Network NZ had 5 new members in one day! I think this is a record.
If you want to join also: http://www.reflux.cryingoverspiltmilk.co.nz/grsnnz-membership-confidentiality-agreement-form/
I haven't processed most new members from this week as my middle daughter has been very sick with glandular fever. I'll do this as soon as I can.
Roslyn Ballantyne, National Coordinator
Gastric Reflux Support Network NZ for Parents of Infants & Children Charitable Trust Membership & Confidentiality Agreement Form First Name: Last Name: Email Address: Street Address: City/Town: Area: Auckland Canterbury Gisborne Hawkes Bay Marlborough Nelson Northland Otago Southland Taranaki...
Hi there, im new to this page and I've just found out my 12week old has gastric reflux.
We are currently going through a growth spurt and she appears to be in more pain from the extra milk intake, has anyone experienced this?
I'm thinking about taking her to the hospital to get some pain medication....
Hi all, Just wondering if any of you have had a similar experience. My 7 month old is on omeprazole 2ml morning and night. For a few nights we have accidentally forgotten to give it to him... And then the last 2 nights he has screamed blue murder for hours. He would go down ok but then wake and cry for hours like he is in pain. Nothing will console him. Its the only thing we have done differently - has anyone has a similar experience??? Thanks! Bec
Hey! Day 4 on gaviscon for our 4 week son and he's constipated any suggestions to get him going?
Hallucinations on Omeprazole!? ... Forgive me if this has been discussed recently or at all (probably not I'm guessing) I was active on this page when my daughter was just a baby with terrible reflux. She was on omeprazole back then until about 8-9 months old. She is back on it as of a week and a half ago just to trial whether her frequent cough and waking in the night could be reflux back at age 3.5!!!!.... Anyway, for the last 4-5 nights she has woken terrified that there are worms in her bed and on her body. (It is not a nightmare or a night terror) last night was the worst night yet! Awake from 1-5am with the most frightening hallucinations yet. Worms and flies all through the bed, on the ceiling and even as I consoled her she screamed that they were all over my face :( it was heartbreaking. Even with all the lights on she could see them. I could go on describing this but I won't. My question is has anyone's child or you yourself experienced the very rare (but documented) side effect of hallucinations? Needless to say I am stopping the meds today.
Please tell me someone is in the same boat...
Our son can't sleep for longer then a few minutes at a time without gagging on his reflux and waking himself up. Normally the only way for him to get any sleep is to sale him and hold him vertical against our chests.
He is on Gaviscon, Omeprazole (losec) and we've just dropped Ranitidine (Zantac) and added Domperidone. Nothing so far is helping to resolve this sleep issue. His bed is on a steep incline but often the moment you put him in it he starts spluttering and throat clearing loudly until he wakes.
He's 9 weeks and I've been dairy free breast feeding for about a month. He has now started Neocate formula.
Anyone else have a baby who can't stay asleep because of reflux? Any tips?
There is a new post to the page asking for any feedback on experiences around surgery for reflux.
I would love some feedback from parents who kids that have had a fundo. Our daughter (6) has been suffering all of these years with reflux combined with eating disorder (avoidant restrictive food intake disorder, basically associates food with pain) and now docs have suggested a fundo so I'd like to hear people experiences
We are being kept up to date with this, so will make sure this is added to the website links when it is available.
Breastfeeding mums and pregnant women will soon have useful tips and advice at their fingertips with the launch of a new, free, breastfeeding app.
Has anyone found that omeprizole made a reflux baby worse??
Ds is the worst he has ever been since starting losec, but I'm unsure whether its the losec causing it or something else.
Has anyone seen improvement after stopping losec?? He's 4.5 months
There is a new question if anyone wants to share their experience. Remember no medical advice! :-)
I'm interested in chatting to anyone who may have been, or is, in a similar position to me. I have a beautiful 3 month old son, exclusively breast fed. I think he's suffering from silent reflux. He looks like he is going to vomit, sounds like liquid comes up, but doesn't spit anything up. He flicks quickly between happy and unhappy baby. He seems to want to feed a lot and doesn't seem to have an off switch when he is full. I'm worried I'm making him worse feeding him. He's always gained weight well until more recently. We had been using a dummy but stopped because I got sick of him waking wanting it in the night, but starting to use it again in desperation. He's thankfully a very good night sleeper. He is starting to get bottom teeth now to make things worse! He has a lot of dribble at times. He doesn't really spill a lot, and doesn't cry that much but just doesn't seem happy. Currently trying homeopathic wind drops, weleda colic powder and I take a tea that was made up for me with multiple herbs including fennel. I've also got an amber necklace on him. I am not a hippy but like the idea of natural solutions more than giving him meds if I can find something that works. Happy to use medication though if needed. He has no signs of any allergies so I don't think it's that. Interested in any suggestions or thoughts! Thanks!
Just for some fun. You have to watch the clip.
Thinking back two years prior to pregnancy, this couple recalls how they thought they had everything about parenting all figured out. But they quickly realized all of their aspirations were not very realistic when their precious little one was born into the world.
Gastric Reflux Support Network NZ shared Judy Arnold - Infant and child Consultant's photo.
It is about time for another Coffee together and to ask Questions Thursday morning, 9.30-11. Looking forward to catching up.
Just wondering - is gaviscon like a fast acting relief - like for that feed only- or is it longer lasting ?
I haven't used gaviscon for 3 days and my 10 week old has been good for 3 days so thought maybe he was getting a bit better - but then tonight spewed up quite a bit. Is that because the gaviscon was still working in his system and now has worn off ? Or does it have a shorter term effect ?
We have also just started trying formula. 50ml yesterday and today and it was after that he spewed- so also wanting to rule out the fact that it's the gaviscon wearing off...to see if the formula is making him spew.
I'm pretty sure he's reacting to the formula but just curious how long gaviscon relief works also.
Gastric Reflux Support Network NZ shared Hope For The Broken Hearted's photo.
Gastric Reflux Support Network NZ shared Interstitial Cystitis Association's photo.
Gastric Reflux Support Network NZ shared Patient's photo.
Gastric Reflux Support Network NZ shared a page.
Empowering families of people with disabilities and health impairments through support and information.
Hi there, my daughter has been on omeprozole granules (5mg, twice daily) since 6 weeks old. I've talked to our GP about how and when to wean, his advice was to go cold turkey "whenever we felt like it"..!
I'm looking for some advice from other families on how they went about weaning - Would like to take a gentle path.
Are there signs of readiness?
What age did you start?
Did you drop one dose and see if there was any effect before fully weaning?
Or is cold turkey the right thing to do, after all?
Does anyone know if its okay to mix kiwiherb stuff with losec to mask the taste if you stick to the correct dosages? Eg .5ml each of kids calm, echinature, and chest syrup mixed with 3.8ml of losec?
10 day old baby showing signs of reflux already. Similar to his brother (who is now 22months).
He has the "breath that smells like stomach acid", looks like he's got a bad taste in his mouth, the "cottage cheese" spit up at times and obviously a very sore tummy after feeds.
I am babywearing to keep him upright which is helping.
I suppose what I'm asking is at what point do I go to gp and ask for a paed referral? My husband says don't go looking for trouble until it becomes a much more obvious issue.