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 A thorough update on surgery would be outdated before you received it.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 a page.
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Get in fast...there isn't long to go.
If you are a Health Professional or other agency, please click http://www.cryingoverspiltmilk.co.nz/request-awareness-week-poster/ to request your National Infant and Child Gastric Reflux Awareness Week Poster(s). Posters are funded by NZ Lottery Grant Board and Community Post have donated envelopes. A preview of the Posters is available on the request form.
Gastric Reflux Support Network NZ shared a link.
Linkage provides a variety of services to help people navigate their way through the government, health and social service systems to find solutions that best meet their most urgent needs.
Hi everyone, there is a new question about Pepti Junior and reflux on the page - have a look if you have any experience. No advice please, just share experiences.
Has anyone found that Pepti-Junior formula triggers silent reflux? I can't see how this is possible but my toddler's silent reflux has been rearing it's ugly head for the past four months and after slowly eliminating anything that might possibly be a trigger, the only other thing left is his formula, which was prescribed around the time when everything went pear shaped again. He has recently turned two but isn't teething (I've had a good look and a feel). He was prescribed Pepti-Junior because he is dairy free so am hesitant to remove it from his diet. Has anyone else found that their little one reacted to Pepti-Junior? Thank you :-)
Please don't be afraid to ask for help or support. If you can't afford private help there are other options.
This year the National Infant Gastric Reflux Awareness Week has been renamed to include Children – National Infant and Child Gastric Reflux Awareness Week
Gastric Reflux in Infants is common and normal due to immaturity of the sphincter at the top of the stomach. The baby may be a bit unsettled and may have periods of crying. Crying in a normal infant with Gastric Reflux will usually peak in the second month and settle around three to four months. They may have short bouts of painful crying associated with a spill, but this crying is not prolonged. Spilling may also disturb sleep. Gastric Reflux does not need to be treated with conventional medication.
Gastro-Oesophageal Reflux Disease (GORD) is relatively rare and occurs when Gastric Reflux causes some sort of complication usually including pain. The predominant symptom may be a high-pitched pained scream although this is not always the case. Some babies may have feeding difficulties, not grow well or have problems with sleep. GORD can be managed in a variety of ways including diet, upright positioning, parenting techniques and as a last resort medications. Not all cases of GORD will need medical treatment.
The bottom line is you need to take your baby to a doctor for a proper diagnosis if you think they may have gastric reflux and it is a problem.
The Gastric Reflux Support Network NZ for Parents of Infants and Children Charitable Trust acknowledges the impact that coping with Gastric Reflux can have on families and hopes that by promoting Awareness that although Gastric Reflux is common, it is normal to feel overwhelmed when faced by all that Infant Gastric Reflux includes. Please don’t feel that you are alone because you aren’t. There are many other parents who understand.
Most Infants outgrow Gastric Reflux as their digestive system matures, but a few continue to suffer from this invisible disability into childhood. As they get older a preschooler may develop problems with their behaviour, appear tense or be overenergetic and can’t concentrate, or have difficulty expressing their feelings. School-aged children with gastric reflux are often very self-conscious about being different from other children and want to be normal. They may try to put up with their symptoms and won’t ask for help until the very last moment. They usually do not use their condition to seek attention.
On http://www.cryingoverspiltmilk.co.nz there is more information on Gastric Reflux, National Infant and Child Gastric Reflux Awareness Week Posters can be ordered and the Gastric Reflux Support Network NZ (GRSNNZ) can be joined free of charge for access to our Newsletters and Private Local and National Support Networks. This gives opportunities to discuss gastric reflux related issues with others in a safe and confidential setting.
In addition to Crying Over Spilt Milk (www.cryingoverspiltmilk.co.nz), this year GRSNNZ launched a new website Spilt Milk (www.not.cryingoverspiltmilk.co.nz) recognising that many parents are coping with infants who spill and/or are irritable, but do not meet the criteria for gastric reflux.
Excerpts from pages on http://www.cryingoverspiltmilk.co.nz included.
http://www.cryingoverspiltmilk.co.nz there is more information on Gastric Reflux, National Infant and Child Gastric Reflux Awareness Week Posters can be ordered and the Gastric Reflux Support Network NZ (GRSNNZ) can be joined free of charge for access to our Newsletters and Private Local and National Support Networks. This gives opportunities to discuss gastric reflux related issues with others in a safe and confidential setting. In addition to Crying Over Spilt Milk (www.cryingoverspiltmilk.co.nz), this year GRSNNZ launched a new website Spilt Milk (www.not.cryingoverspiltmilk.co.nz) recognising that many parents are coping with infants who spill and/or are irritable, but do not meet the criteria for gastric reflux. References: http://purplecrying.info http://healthinfo.org.nz/index.htm?toc.htm?12789.htm  http://www.cryingoverspiltmilk.co.nz/general/copingwithrefluxingtoddlers/  http://www.cryingoverspiltmilk.co.nz/general/gastricrefluxinschoolagedchildren/ Excerpts from pages on http://www.cryingoverspiltmilk.co.nz included.">
Gastric Reflux Support Network NZ created an event.
If you are a Health Professional or other agency, please click http://www.cryingoverspiltmilk.co.nz/request-awareness-week-poster/ to request your National Infant and Child Gastric Reflux Awareness Week Poster(s).
Posters are funded by NZ Lottery Grant Board and Community Post have donated envelopes. A preview of the Posters is available on the request form.
http://www.cryingoverspiltmilk.co.nz/request-awareness-week-poster/ to request your National Infant and Child Gastric Reflux Awareness Week Poster(s). Posters are funded by NZ Lottery Grant Board and Community Post have donated envelopes. A preview of the Posters is available on the request form.">
Gastric Reflux Support Network NZ shared a link.
Gastric Reflux Support Network NZ shared Judy Arnold - Infant and child Consultant's photo.
Tomorrow, Thursday, 10 am-11.30 is Question time. I am looking forward to hearing from you.
Has anyone got any dietary tips to help a 9 year old with reflux. She has had a pH probe done which shows high acidity levels, barium meal (waiting on report). She is currently on Rinitadine. She is under a paedatrician - but he is on holiday until June. Not considering taking her off the Rinitadine - but, if I could help by giving her lower acid foods that would be great. She was a happy chucker as a baby. Thank you in advance.
Hi all...not sure if I am allowed to do this or not, but thought this would be the best place to ask. I've had a few people tell me that I should see a cranial osteopath for my 1yr son who has reflux and is also dairy intolerant. I am in Cambridge. So would like to know if anyone has had any success with this kind of treatment and any recommendations on who to see. Thanks in advance :)
Gastric Reflux Support Network NZ shared Hope For The Broken Hearted's photo.
The Bible say laughter is good medicine. God designed us to laugh because it helps our bodies. Laughter releases endorphins, which are made in the brain and spinal column. Endorphins act as analgesics (diminishing the perception of pain) and as sedatives that calm emotions. If you're feeling sad, stressed, or anxious, watch a comedy for a little while... your brain will feel better and you will feel your spirit lift for awhile.
Gastric Reflux Support Network NZ shared Judy Arnold - Infant and child Consultant's photo.
It is that time again. Friday afternoon, 1.30-2.30 Spread the word.
Gastric Reflux Support Network NZ shared Inspiring and Positive Quotes's photo.
I had to share this one!
Inspiring and Positive Quotes <3
Those walking on a similar path are more likely to understand.
Gastric Reflux Support Network NZ shared Inspiring and Positive Quotes's photo.
Inspiring and Positive Quotes <3
Gastric Reflux Support Network NZ shared a page.
This is GRSNNZ's new additional website. It has it's own Facebook Page attached to it. We were aware that there was a group of parents who were not getting the support that they needed as although they were stressed by their situation, their babies were not deemed to have gastric reflux. Please let anyone you know who might benefit from support with others about the website and associated social media.
Welcome to “Spilt Milk”! The aim of this website is to provide information and support for parents or caregivers who are stressed by coping with their infant who spills and/or is irritable. The hope would be that by participating with others with similar challenges and experiences, that a...
Hi Roz and team just to let you know we are re branding from Mothers Matter to PND Canterbury and the new website went live last week http://www.pndcanterbury.co.nz. There is a page on support for Canterbury. If there are any Mums/Dads with any questions please get in touch email@example.com or call me on 021 131 4352 Sonya. :) I to had a reflux baby through to about 3 years so I really do get it.
Postnatal Depression Family/Whanau NZ Trust. Our mission: To support the wellness of mothers and their familes who are suffering from postnatal depression (PND) and other related mental illnesses.
Jess McBrearty :)
My daughter was discharged from hospital last Monday, but is still very unwell. I processed all the membership forms last week (except for one that has since come in) and have finally come up for air.
I've just turned on the phone and cleared the messages, but I only have one. I know there was at least one other from 27 February, but the phone hasn't saved it. Please phone back! I would love to talk to you.
The GRSNNZ 0800 number and cell phone is currently not being answered or messages cleared. I haven't had a chance to change the message on it either.
I know there is a message there from last week I haven't cleared too.
My daughter has been in hospital since Monday and we had several visits last week. I'll attend to the messages hopefully next week.
My 4 week old baby is on Ompreazole granules and we are going to start weaning him off in a few weeks to see how we go. I am considering starting him on probiotics to help this process. Can I give probiotics to a 4 week old or do I take them and he gets the benefit through my breastmilk? If I give it to him how do I administer it and what brand is best?