Feeding rollercoaster continues...

Food is getting through the nissen now, but he isn't wanting to eat by mouth as much. He will eat chips though! Doesnt drink much. Few sips water a day, now wanting it with a real straw with a cup. He wants noodles one day, has a few bites then is done for the week. He begs for rice, so I cook it right then and there, and he screams NO at it. I could go on. Can we say picky oral aversion child?
Then the other day he retched so bad after a tube feed that he actually threw up a little. What in the world? We went from a too tight nissen to this again?
He is retching as I type when I just gave him 120 mls. His normal feed is 150 and he has even been taking more than that at times. Today he started the gagging again. I am done trying to figure things out. I hate HATE to watch him get sick, but I dont know what to do. HE HAS to be fed, but gets sick. Guess we just go back to the pump/slow feeds and he is on that for hours during the day again.
I am not even talking about it with people. It has been 2 yrs of the ups and downs with the feedings. So, here is where I will vent. People are bored to death listening to it and really, Im sure they just dont understand it. THen you have people that think you just need to let him get hungry and they just dont understand this HUGE problem. And they never will...
I dont think there is a specific problem causing the retching anymore. I am finally going to start believing Dr K and accept that this is just the way it is. Im seriously ok with it, but at the same time Im starting to cry. Make sense? Guess that means I think this is his life for now and however long it continues and I hate it for him. As soon as I wean him to faster feeds he does great for a while then he cant handle it again. Or food gets stuck in his esophagus. Or something else. VICIOUS cycle.
So, for myself tonight, I am listing some positives:
He will try/lick some foods now.
He doesn't dry heave when he sees food.
He lets me brush his teeth.
He is talking like crazy.
He runs, swinging those darlin lil arms back and forth.
I can wipe his mouth/nose/face w/o him gasping for air because he is so scared.
He held a popsicle at church tonight, licked it some and let it melt all over himself.
His sticks his tongue way far out like a lizard now.

a yr ago these things seemed so far away. All the norms for other babies have been huge accomplishments for him, and he is doing them. One day I will look back and think how far he has come again. Just seems like such a long road while you are living it.

Thanku, Jesus that Camden is doing amazing.

Back home & no surgery

This post will probably be all over the place, so I'm warning ahead of time, but just wanted to explain the details about today.

We made it to Gville this morning and did the esophagram. We were leaving to go find a hotel since we were supposed to have surgery tomorrow morning and as soon as we walked out of hospital I got a phone call to come back inside and talk with Dr Kays.

The call was perfect timing, because I was not 100% on this surgery BECAUSE I gave in a few days ago and let Camden eat some, and it made it through. It never came back up. So, for the last few days I have been wondering around in confusion and hoping (strangely) he'd choke it up to prove to me that he needed this major surgery.
He never choked it up.

Soooo, Dr K says he was feeling like he didn't want to do the surgery right now.(I told him about the food that stayed down) I was relieved about no surgery, yet thinking, "Oh, he'll probably choke on the next thing he eats" (a little faithless moment lol) But I was SO glad we could go home and my boy wasn't getting cut on.
Then I cried, and cried ( I have always held it together with Kays, but not so much today ;S) because CDH can be such an emotional roller coaster. And I already know about this roller coaster. I have lived it for the last two years through trachs, and vents, and oxygen tanks, and am so glad to have him HERE to be able to do it all that, but I was wanting him "fixed"

Hmm.There isnt just a quick fix. Yet, I know this too.

If he starts eating and does worse, we'll go from there. Has the nissen loosened a little and things are passing through now? Will it slowly start to close back up again? All unanswered ?s and we just have to take it day by day.
Dr K said the nissen still looks too tight, but it did look a little better according to esophagram, ( and that fact that some food made it thru) but hard to tell completely. He wanted this last test before surgery to convince him he needed it, we did it, and he made his best decision. A third major surgery like that,cutting through the same incision is a big deal and we need to be 100% sure it is needed. There is also a chance (if this nissen surgery isn't needed before) that as Camden stomach grows it will loosen that wrap around his esophagus. At the same time we want Camden to eat by mouth so we don't want to wait forever. (but thank God for gtubes) So we wait for now and see if things are starting to work better on their own.
We are trusting God. Once again, that is all I can think to do. ;o) God worked a few things out today and I came home with peace and clarity. I've been so worked up and confused over this surgery, but I knew He would give us the answer (and peace about that answer) before surgery.

I told you this post was going to be all over the place. In the mean time Camden is eating some spaghetti noodles, climbing all over the high places in the school room that he shouldn't be climbing on, and needs a bath because he has contrast all in his ears, (because I have to force it down his throat during testing, because obviously wont drink it voluntarily) and I am beyond thankful for these things.


Thank you to those praying for our boy. It means so very much.

Nissen Surgery

Here is part of an article I found on nissens. This is what Camden had at 9 wks old, but is still having complications. In his case this one is too tight which is causing some food to hang out in esophagus and not make it to his stomach. We never knew before because he has always been tube fed, but recently when he started experimenting with food we realized something was wrong. Several people have asked what it is exactly, so I thought I'd post this. Depending on what they see while inside him, this is pretty much close to the surgery he'll be having (again) this Friday in Gainesville.

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!


Introduction by Caroline

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!

Caroline

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 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.)


Ask The Doctors - interviews with two doctors

Kathryn Anderson M.D., Chief of Pediatric Surgery, Children's Hospital Los Angeles, CA (CHLA)

Q - As a pediatric surgeon, what indications or criteria must a child meet before discussing a fundoplication surgery for GERD?

Before considering gastric fundoplication, a child must have clinical evidence of GER which may include one or more of the following: vomiting, malnutrition, failure to thrive, developmental delay, esophagitis, esophageal stricture, pulmonary complications such as aspiration pneumonia, asthma, restrictive airway disease, chronic cough and apnea.

Reflux is associated with a variety of neurological diseases. Children who have cerebral palsy, Downs syndrome/chromosomal anomalies, hydrocephalus or severe head injury should be suspect for GER although they may not exhibit the common clinical signs or symptoms. These children may ruminate or have a history of vomiting with bizarre neck and torso spasm referred to as Sandifer's syndrome.

When GER is suspect, one or more of the following studies may be ordered to confirm diagnosis: Esophagram with gastrointestinal follow-through ("Upper-GI"). This is most common of radiologic studies to evaluate for reflux. It will also identify other anatomic problems which may cause vomiting. The study has its limitations as it only identifies GER occurring at the time of the study.

Gastroesophageal scintiscan. This is a highly sensitive radiologic study which will identify GER as well as measure gastric emptying time.

24-Hour pH monitoring. This study may be ordered in difficult diagnostic situations. A pH probe is placed in the distal esophagus via the nose where it
remains for 24 hours measuring the number and severity of acid/alkali reflux.

Esophagoscopy. If a child is still suspect for GER despite negative results, an esophagoscopy with biopsy can identify the presence of esophagitis secondary to reflux as well as complications such as esophageal stricture.

It is important that the above tests be done by a qualified individual with pediatric experience for accurate evaluation.

Treatment is dependent on the age of the child and the severity of symptoms. Infants often have reflux which resolves by 6-8 months of age. Unless GER is severe, medical therapy should be attempted prior to surgical corrections. This may include smaller feeds given more frequently, thickened feeds and keeping infants in a prone upright position to minimize reflux and promote gastric emptying. Infants and children may be started on medications which increase the pressure of the distal esophageal sphincter and promote emptying of the stomach if dietary measures fail.

If, despite medical management, the child still has evidence of reflux, then surgical correction of the problem is appropriate.

Q- Could you briefly describe what fundoplication surgery is, the average hospital stay, and the average recovery time?

Fundoplication, simply described, is a surgery which mobilizes the gastroesophageal junction below the diaphragm to increase the length of the intra-abdominal esophagus. The upper portion of the stomach (fundus) is wrapped around the esophagus to create a valve-like mechanism which prevents the reflux of stomach contents back into the esophagus. The stomach may be wrapped completely or partially around the esophagus in varying degrees. The different degrees and orientation of the wraps are referred to by separate names.

The average hospital stay following a fundoplication is 4-5 days, and is dependent on the child's ability to return to full feeds either by mouth or gastronomy tube if one has been placed. The child should be essentially recovered in approximately 2 weeks.

Q - What are the most common complications post-operatively?

Complications which may occur vary in severity. They may include:

• Inability to begin or advance feeds orally or by gastronomy tube due to a delay in intestinal function following surgery. This may present as abdominal distension.
• Inability to begin oral feeds due to post- operative swelling at the surgical site. Food will pool in the esophagus and not pass into the stomach causing the child to gag and vomit. This situation usually resolves within a few weeks.
• Inability to tolerate full feeds as the gastric capacity is temporarily reduced after surgery.
• Retching.
• Slip of the wrap above the diaphragm.
• Disruption of the wrap.