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 A thorough update on surgery would be outdated before you received it.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
Is infant gaviscon at all effective for 2.5 yesr old? my son reacts to ranitadine and omeprozole but has had a reflux flare up which is now resulting in vomiting after lying down in bed. He's even coughing and gaging on water during the day probably from the irritation in his throat etc. I'm having to wait quite some time after dinner to give him rice milk and again before attempting bed. It's pushing bedtime out too far with him not napping. Any suggestions? Can't pinpoint anything dietry wise that may be causing it.
Hi everyone. I'm after a bit of advice, my 20month old has recently commenced on liquid iron supplement (after we were told his iron levels are low from blood tests) but we've found its giving him a really sore tummy. Have tried halving the dose but I still have a tearful distressed little man on my hands. Does anyone have any ideas? Or can recommend something else.
Hi there, I'm wondering if someone could please advise me. I have been dairy free for 3 weeks today and introduced some back in today; just butter on one piece of toast and a splash of cows milk in 2 hot drinks. My daughter's been crying and not sleeping most of the day unless held. I've also been block feeding to try to prevent her choking etc on my fast flow, however Plunket advised I may like to rethink that now she's 8 weeks old so my supply doesn't diminish. She's a frequent feeder and I've managed to push her out to 2 1/2 hourly feeds over the last few weeks (on Plunket and Dr advice as they said her always feeding would make the reflux worse). She had been quite a bit better over the last week. Tonight I offered her the other breast at her feed as well, instead of the same one as usual and she had a good feed, so obviously needed it. But my goodness, the reflux has been really bad afterwards with lots of gagging and choking and pained crying etc etc (she's not much of a puker). I don't know if this is from having both breasts at the one feed (surely not) or she's super sensitive to the dairy? I'm wondering how long it will now take to see if there's improvement now that I've quit the dairy again? Please tell me it won't be a whole other 3 weeks again!! As I said, it was only a small amount reintroduced today.
Paging Rebecca who left a message on the Gastric Reflux Support Network NZ Support Answer Phone on Monday!
Sorry, for some reason I can't return your call. Can you either text us again on 022 585 5935 or send us an email through the website (which is now working) - http://www.cryingoverspiltmilk.co.nz/contact/
Contact Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust Phone/Text 022 585 5935 Phone 0800 380 517 * indicates required field Name:* Email:* Subject:* Message:* CAPTCHA Code:* Request Skype Call/Conversation using the form above. Page last updated…
Just trying to access the website about allowances in nz.. nothing will load?
In all the reading I've done about reflux babies it seems common that they don't settle to sleep to well
During the day but will at night? Why is that?
I don't know if any of you have noticed, but as the website is having a lot of updates at the moment, I have started adding a blog about it to the website. The posts appear on the home page, under the Facebook Preview. Roslyn, National Coordinator.
For infant and child gastric reflux support in New Zealand: Phone/Text 022 585 5935 Phone 0800 380 517 Contact GRSNNZ via email form Join Gastric Reflux Support Network NZ for Parents of Infants and Children Charitable Trust for access to our Newsletters and Private Local and National Support Networ…
Interesting article on dreamfeeds:
Will ‘dream feeds’ work for your baby? Dorothy Waide shares her insights on this late night option.
does a thickener help for Elecare formula? It seems to be so thin and my little granddaughter is spilling a lot with this formula.Would welcome your feedback thanks
Christchurch people - there is a new post from someone needing help finding Karicare Aptamil Food Thickener. If you know where to find it, can you please reply on their post?
Does anyone in CHCH know where to find the formula thickener for Elecare formula?? My wee one has just been put onto Elecare and I am finding it needs to be a bit thicker as she is bringing up a lot just like the breast milk. Not all pharmacies sell it
After some advice, I have a 10 week old with possible silent reflux ( just started gaviscon) we are wanting to progress to help him achieve self settling. Does anyone have any methods that worked? Absolutely no comfort in patting and shushing... Or am I asking too much from my little man that finds a lot of comfort in being rocked to sleep?
Hi all, Just wondering if someone could confirm for me that going dairy free means you can still have non cows milk products like sheep or goat products? I read the spilt milk site and seems to be a cows milk protein issues, not other types of animal products? I just ate sheeps feta then second guessed if it's OK.
My 16 month old just saw an allergist today and he told me it sounded like he had reflux. He had it as an infant but around 9 months he stopped needing meds and was fine, but now this winter he has stayed sick! So I'm really trying hard to wrap my head around this... I feel like my baby has been sick for months (stuffy, sneezing, coughing, wheezing, fever.. the list goes on and on) and it's just reflux! I mean if that's the case I guess I'm relieved because that seems like a simple fix. I just feel like he's really been suffering. His pedi was thinking he had asthma and sinus infections. The allergist did swab his nose to see if anything comes back on it but for now he is just taking nexxium(sp?) and a nasal spray.
Ignore my previous message (If you saw it), http://www.cryingoverspiltmilk.co.nz is back!
For infant and child gastric reflux support in New Zealand: Phone/Text 022 585 5935 Phone 0800 380 517 Contact GRSNNZ via email form Join Gastric Reflux Support Network NZ for Parents of Infants and Children Charitable Trust for access to our Newsletters and Private Local and National Suppor…
I asked for a script for infant gaviscon and was given Acidex. Whats the difference?
Hoping for a bit of help/more advice. My now 8 week old baby has what we believe to be silent reflux, no one has actually diagnosed her with it, but have been given meds to help. She definitely regurgitates milk, and sometimes projectile vomits (she has only started doing this recently). I am getting so lost of what to do next, we have another appointment with the GP on Thursday, but in the mean time would love any advice on what I can do to help her.
We started out on Infant Gaviscon, which didn't help much at all. Then onto Ranitidine, which didn't help either. We got prescribed Losec by my GP to use with gaviscon. Which seemed to help for two weeks, but now she is back to being so unsettled and unhappy. From birth she could only ever drink a small amount before she got really uncomfortable and started screaming, I started expressing to get an idea of what she is really drinking, which turned out to be bugger all, this was why i was feeding her 20 odd ml every 1/2 hr to an hour. I'm doing everything I can to help her, have got the bassinet head raised, burp after what seems to be every mouthful! I wear her in my wrap a fair bit during the day for some of her naps.
I took her to the osteopath last week, and her said she was very sore and had a very tight diaphragm. Two nights later she slept 6 hours! But the next night she was back to a couple of hours at a time. I have another appointment on Thursday.
As I have a 20 1/2 month old toddler and, expressing got too much as I could never find the time to do it, so now have her on Karicare Formula, which i'm not 100% sure if this is upsetting her stomach aswell. She was induced at 38 weeks as they were concerned about her growth, she was 6lb 3 oz at birth.
What would be the best formula to have her on? She is still currently on losec and gaviscon. AND how can I ease the screaming after every feed? I'm really starting to stress alot about it and find myself getting pretty emotional.
Thanks and sorry for the long story!
Hi everyone, my daughter had severe gerd up until about 9 months and was treated with losec and gaviscon and eurthymician (sp). Four about 3 months she was really good, not needing any meds at all so we weened her off them. She has been med free for about 6 months, but the past two months we are back to screaming and crying every hour each night ( was previously a good night sleeper!) very unsettled etc, but no vomit . My question is can reflux suddenly come back ?
Just popping in to clarify our website/forum guidelines.
Please see this page: http://www.cryingoverspiltmilk.co.nz/guidelines/
"As the moderators, GRSNNZ reserves the right to remove or edit any posts:
that recommend another medication as being better or to treat conditions that it is not indicated for
where dosages of medications are being compared (especially in an unsafe manner) as each child is an individual with differing needs
where personal advice is given on choosing a formula (sharing experiences is fine)
where volumes of fluid drunken are counted and compared
with personal attacks against other users including GRSNNZ staff
Medications and prescription foods and formula may not be offered for sale/give away on these forums."
"Please seek assistance from your Doctor, Midwife, Health Professional or Dietician about feeding your baby. "
We are getting a lot of requests for advice regarding choosing formulas over the phone, by email and on the forum. Members can tell you their experiences, but they are only their experiences and do not apply to your baby. Please contact your health professional for advice in the first instance or Nutricia also have qualified dieticians.
GRSNNZ supports the Baby Friendly Initiative and promotes Breastfeeding. GRSNNZ will not give personal advice on formula.
Site Guidelines Most of the information on Crying Over Spilt Milk is copyrighted and may not be reproduced on another site/publication without permission, but some may be printed for the personal use of families (and these pages will be clearly marked at the bottom with instructions.) Some material…
Please help i am desperate! My wee 9 week old is under a paediatrician forbreflux and a maybe dairy allergy. My milk supply is starring to drop and she has been given Elecare but she refuses to drink it. Have tried vanilla essence and mixing it with my breast milk but still no luck. Any help/advice will be greatly appreciated 😊
Hi. I am having real trouble settling my 9 week old baby, especially at night. I would like to wean her off me and have tried both pepti Jr and neocate but no luck. Also on ranitidine for refulx. Am i just best to breast feed or is there other options?
Sharing for your information. Please read the whole article - there are safe options.
A survey of portable cots for sale in New Zealand has uncovered potentially fatal safety defects - including folding mechanisms that could trap a child's neck. - New Zealand Herald
I don't know if this is the right site but my mum is being treated for reflux which has brought on burning mouth syndrome.
All her food tasted awful and was wondering if anyone has any tips if dealing or getting rid of this?
Thank you x
May your heart be warmed by the sweet magic that Christmas brings, and may all your dreams be fulfilled.
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The GRSNNZ 0800 number and mobile will not be answered or messages cleared between these dates: 25th to 28th December and then again from 1st January to 11th January. You are welcome to leave a message or text and we will respond as soon as we are able.