Motility is defined as how food travels along the GI tract. Typically, after eating, food goes through four parts of the GI tract: esophagus, stomach, small intestine, and bowels. When a child has dysmotility, it means that the food is not traveling as it should. Dysmotility can happen in isolation in one part of the GI tract, or it can happen throughout.
More often than not in kids, dysmotility means food is traveling too slow, though there are also hypermotility syndromes, such as dumping, when food travels too fast.
Symptoms of dysmotility
- Difficulty swallowing
- Abdominal distention and pain
- Nausea and vomitting
- Refusal to eat more than a small amount/feeling full quickly
- Intolerance of bolus feeding
- Or any combination of these
Reasons for Dysmotility
- Structural abnormalities
- Low muscle tone
- Nerve damage
- Neurological conditions
- Disease states, including eosinophilic disorders or mitochondrial disease
Tip: Motility may change day-to-day. Some days, your child may have excellent motility, and other days it may slow considerably. Common causes for changes in motility include illness, activity level, and diet.
Lucas was 13 days old when he started to projectile vomit about 2-3 feet. He wasn’t a good eater from the start. He would take a couple of ounces at best. He was spitting up frequently. By one month old, he could swat a bottle out of my hand. He cried a lot, he slept poorly, he arched and squirmed. Reflux was an understatement. Our GI said it was the worst reflux she had ever seen.
Shortly after we began tube feeding at 2 months, we realized that bolus feeding was not working at all. Lucas would vomit before the feed was finished. He would vomit an hour or two after a feed. Slowing it down didn’t work. We moved to continuous feeding. While it was a big improvement, there was still a lot of discomfort.
The first things Lucas was tested for included:
- Structural abnormalities – Upper GI series (8 weeks old)
- Swallow Study – checking for aspiration and dysphagia (difficulty swallowing) (8 weeks old)
- Endoscopy with biopsy – testing for food allergies, Eosinophilic Disorders, they also checked down to the duodenum for structural abnormalities (3 months old)
- Lower GI series/Colonoscopy with biopsy (13 months old)
- (non GI) Cystic Fibrosis,
- Heart conditions
- Metabolic Conditions
- Endocrine Issues
All these tests came back normal, except he aspirated thin liquids, which has nothing to do with his motility. During this time we really tried oral feeding – we would stop feeds for about an hour before an oral feed and then leave him off feeds for 2 hours after. Because we had to keep him off feeds for so long, his weight gain suffered. Oral feeds often yielded vomit. We didn’t want to create more oral aversions, so we slowed it down.
Ironically, we never performed a Gastric Emptying Scan (see Tests). There was so much clinical evidence that the stomach wasn’t emptying properly, we didn’t think it was necessary. Moreover, we weren’t confident in the ability of Lucas’ stomach to handle the volume needed to conduct the test.
By the time he was 6 months old he moved to a G-tube. The first thing we noticed was the large residuals we saw when we vented his stomach. We could see an ounce or more when he was running at about an ounce an hour. He also continued to vomit large amounts for the low rates we were running. Now, we are talking 8 – 13 vomits a day, 24 hours a day, and one vomit event could also include 4-5 retches. Looking back, I am amazed he continued to gain weight. But, he was definitely low-level dehydrated. We struggled to get in and keep in what he needed.
We moved to a GJ at 13 months and it was like I got a new child. He was so much happier, he slept better, he gained weight, he made more progress on milestones. Bypassing his stomach was fantastic, all the formula stayed in. (See GJ tubes). We regret not doing it sooner.
About 2 days after getting the GJ, Lucas started to projectile vomit bile at the rate and frequency that he was vomiting formula. We were told to start continuous venting. We had to figure out how to do it with an active almost toddler. Farrell bags are traditionally used, but don’t really work when the stomach won’t re-feed what empties out. G output. the combo of bile, stomach juices. and possibly what was orally fed, should lessen in a couple of weeks into the transition to a GJ tube.
We continued to see a lot of G output, so we moved to get manometry testing done. Manometry measures the muscle movements and coordination. About the same time we did genetic testing. Lucas was 19 months old. Essentially, when you run out reasons for dysmotility, you may end up at genetic testing. Lucas had low-tone, and had developmental delays, including speech delays. But, so many of his issues were GI related that none of our docs (including specialists) considered a genetic cause likely.
The manometry showed there was no peristalsis or motility in the stomach. His stomach muscles weren’t reacting to the presence of food. Because we were seeing so much G output, there was some concern that there was dysmotility in his intestines, too. But that wasn’t the case.
Genetic testing revealed he is missing 4 genes on his 17th chromosome (17q21.31 microdeletion, now called Koolen de Vries Syndrome). The missing genes are the root cause. Chromosome abnormalities often cause low muscle tone. Lucas’ stomach is very low-tone. His brain sends the signals to start digestion, but the muscles aren’t strong enough to respond correctly.
As kids grow and have muscle development, motility can improve. Lucas’ long-term outlook is good. We were told that as his muscles strengthen they should begin to work correctly. He has moved from a GJ- to a G-tube, but is still continuously fed.
For the first three years of Peyton’s life, other than a poor latch and delays in adaptive skills, she ate fine. She loved food. She was 50th percentile; her growth from being an IUGR baby was fantastic. Her bowel movements would often switch from infrequent to diarrhea, but it never seemed to bother her. Peyton has a progressive disease, and unfortunately all of the above mentioned would change, drastically. I will start from the top and work my way down.
Peyton’s swallow had always been off. She gagged, she coughed, she would put her head back and fuss. We used to think that it was due to her GERD. Following her third difficult-to-treat pneumonia, it was suggested that Peyton have a swallow study. Her esophageal dysmotility was an incidental find, but it made total sense. Her peristalsis was so slow that eating solids was painful and difficult. While watching the swallow study take place, there were pieces of banana just sitting in her throat. I could not imagine the feeling. This was one of the many reasons Peyton naturally gravitated towards purees. Their advice was to have Peyton take a sip of drink in between bites. This obviously made eating a bit of a chore.
Early 2010, when Peyton was three in a half, eating became a huge issue, and getting her to drink liquids was worse. We started keeping track of exactly what she took in. Most days she would eat breakfast, pick at lunch, and avoid dinner. Her average intake of fluids was 12oz per day. She was getting dehydrated all the time. We were all baffled. We thought at first that it was due to the fact that she was getting her liquids thickened due to airway penetration. We were wrong. As time went by a clear pattern was established. She would not drink on the same days she ate. She was not drinking or eating enough to sustain herself. The tube talk started coming up. Eventually, an NG-tube was placed for fluid intake. As we were forcing 40oz of fluids in a day, it became very clear what the issue was. There was either room for food, or liquid, but not both.
She had an upper GI with small bowel follow through in July 2010. They did not find a structural issue, but what they did find was that it took over four hours for her pylorus to open up and allow the barium through. It was then she received a clinical diagnosis of Gastroparesis. Over time, more of her supplementation was given through the tube, and we eventually switched to full formula nutrition and a G tube. Even then, she would back most of her feeds into a Farrell bag unit and be very distended. She recently had a gastric emptying study done that showed severely delayed gastric emptying. That was done on a diluted elemental formula. It became clear we could no longer use her stomach. She has just started J feeds.
CHRONIC INTESTINAL PSEUDO OBSTRUCTION
There were times things seemed to work OK, and times when things wouldn’t work at all. At times, Peyton would put more into her Farrell bag than she was even being fed. At this point she was already being continuously fed. During these “episodes,” which sometimes included vomiting, but mostly would be backing up, stomach x-rays would show “moderate to severe illeus in the small intestine and colon dilation.” The way this was originally explained to us is that she was developing “fluid air pockets” throughout her intestines. This showed them that her bowels were stopping in areas due to wrong signals, showing there is an obstruction, when there is not an actual physical obstruction. After this happened on numerous occasions, she was labeled with Chronic Intestinal Pseudo-Obstruction. These episodes were treated with complete gut rest and IV fluids. When the obstructions resolve, they will slowly work her formula back up to her normal rate. We never know when these episodes will come. Sometimes they are sparked by illness, other times they come out of nowhere. We are currently waiting on manometry studies to hopefully shed some more light.
As mentioned before, Peyton began having difficulty with eating early in 2010. By May of 2010, after she had gone through months of feeding therapy, it became apparent that it was not oral aversion. No one was suspecting gastroparesis at this point. Our pediatrician sent her for a stomach x-ray. He explained that sometimes when kids do not want to eat, it is due to stool burden. I thought it was a far cry, but we agreed to the x-ray.
What the x-ray showed was that she had stool through all three portions of her large intestine. There was not even an area that was not packed with stool. We thought for sure this was our answer. First, we were to add Miralax, which softened her stool. She started stooling frequently, but her x-ray would show no change. After a month we started adding in Dulcolax suppositories and pills. This would produce large amounts of stool, but her x-ray would show no change. The same story with pediatric fleet enemas. It seemed no matter how soft we got her stool, or however frequent her bowel movements were, we just could not clean out her colon.
At this point we had met with GI, who had ultimately decided that she needed to be admitted for a cleanout. The placed an NG-tube (her first) and ran a substance called Nulytely through it. It basically is an extremely strong version of Miralax. This process took three days and got her cleaned out. Most children would have the NG-tube removed after the procedure, but because they could not get her to sufficiently eat and drink after the procedure, it was decided at that time to leave it in place.
Since Peyton’s first cleanout, her colon has continued to give her lots of trouble. It shuts down when she gets pseudo obstructions, causing it to dilate with air, and she often gets stool burden that require cleanouts. She is currently on a large bowel regimen including; Miralax, Dulcolax, Senokot, and Lactolose daily. These often keep things up and running, but if her colon wants to stop, it is going to stop regardless. We recently did a sitzmark study. Peyton had to swallow a pill with 24 radiological markers. This is normally done off bowel regimen, but they specifically wanted to see how Peyton’s was working for her. Five days after the procedure she had to have an X-ray. All of the markers should be gone after 2-3 days. For a child has functional constipation there will be markers down at the rectum. In someone like Peyton, who has a colon that does not move well, all 24 markers were strung throughout her colon.
There are several procedures being considered including; cecostomy, or illeostomy. Once again, we will need to have manometry studies to decide which procedure would be best for her.
My daughter, Annabella, was born at term. She was a healthy 7lbs 15oz. She took a bottle fine. She has had issues with constipation since early on, but otherwise she was a typical, slightly fussy, but typical infant. She never ate a lot and never really took more than 4-5oz of a bottle at a time. She had some very minor motor skill delays. Once she started sitting up on her own she caught up with the rest quickly…standing, cruising, and she started walking soon after her first birthday.
Around her first birthday, we also switched pediatricians due to a few issues I had that concerned me that he wouldn’t take seriously. At that time, I received copies of their medical records, which included their growth charts. This pediatrician didn’t share percentiles with parents because he felt people put to much weight on them. But I was shocked to see the nosedive my daughter had taken. I knew she was very small for her age, but he always assured me that I just had small children and that it was nothing to worry about. At our new pediatrician for her 1yr check she weighed 16lbs, and the pediatrician was very concerned. He ran some bloodwork that all came back fine except for IgA portion of her Celiac Panel. She is considered clinically IgA deficient, although currently non-symptomatic. He sent us to see a pediatric GI at Children’s Hospital of Philadelphia.
The GI ordered a battery of tests. The first test that we had scheduled was an Upper GI. Immediately the radiologist noticed that even though she hadn’t eaten since the night before there was a nearly full tummy. Then he saw clearly that something was constricting her small intestine just below the stomach. She was scheduled for an MRI a few days later and it was confirmed that she had an Annular Pancreas, which means her pancreas had grown around her intestine and was constricting it closed. She was scheduled for surgery a few weeks later, where they created a bypass around the constricted area. She had a longer and more difficult recovery than expected, and wound up in the hospital for 17 days (we were expecting 4-7 days) and unable to eat anything by mouth for that time period.
By the time we left the hospital and she was ALLOWED to eat, she would take almost nothing by mouth. This was October; in December she was evaluated by the feeding team at CHOP and was accepted into their 4-week intensive feeding program, but she didn’t weigh enough to qualify at the time. So she was admitted back into CHOP, where she had an NG-tube placed. She is supposed to be at 48mls/hr over 10hrs while she sleeps, but anything above 29mls causes her to wake vomitting. So even with the NG-tube she is gaining just minimally and barely keeping up with herself.
We will go back to see her surgeon to discuss and schedule her for a G-tube. We are starting with the G-tube with the possibility of having to switch to GJ-tube in the future. The hope with Anna is that her motility will improve with time once her body retrains itself, now that annular pancreas is corrected.
Specific Motility Disorders
Common types of Motility Disorders include the following:
Food or liquid does not move down the esophagus properly. There may be problems with the esophagus contracting, either due to muscle weakness or spasms of the esophagus. Food may also become stuck in the esophagus if the Lower Esophageal Sphincter, which connects the esophagus to the stomach, doesn’t open properly. Causes may include muscle disorders, neurological conditions, anatomic abnormalities, and post-surgical complications. Symptoms include food getting stuck, vomiting or retching, regurgitation, reflux, heartburn, or chest pain.
Gastroesophageal Reflux Disease (GERD)
GERD is technically a form of esophageal dysmotility. It is typically caused by weakness of the Lower Esophageal Sphincter, which connects the esophagus to the stomach. The sphincter may stay open, be weak, or spasm, or there may be a hiatal hernia pushing on it and weakening it. Symptoms include heartburn, spitting up, and regurgitation. Reflux is common in infants, and only becomes problematic if there are serious symptoms, such as pain, discomfort, or failure to thrive.
Gastroparesis and Delayed Gastric Emptying
Gastroparesis/Delayed Gastric Emptying (DGE) is a condition where the stomach doesn’t empty as quickly as it should. This can make reflux worse and cause non-reflux related nausea and vomiting. Children with Gastroparesis/DGE do not eat or drink large volumes and they do not act hungry.
Gastroparesis literally means paralyzed stomach, and refers to a condition when the stomach does not contract or empty properly. Food or liquid stays within the stomach and does not pass into the small intestine as it should. Delayed gastric emptying is another name for the same condition, though some doctors use gastroparesis to refer to more serious cases, and delayed gastric emptying to less serious cases of slower than normal emptying. They may be caused by weakness of the muscles, uncoordinated and spasmodic contractions of the stomach, or a problem or blockage of the Pyloric Sphincter, which connects the stomach to the small intestine. Gastroparesis is also common after illness.
Children with Gastroparesis/DGE may do better with continuous feeds, or smaller more frequent bolus feeds. Children may not tolerate larger volumes, higher caloric concentrations, and foods that are harder to digest. NJ and GJ-tubes allow infants and children allow tube feeds to bypass the stomach.
Medications are successful in a portion of children with gastroparesis/DGE. The motility benefit is often the side effect, not the medications primary function, so not all will get the motility benefit. Parents need to weigh the risks of some medications for long-term use.
The role of the small intestine is to absorb the food we eat. Intestinal Dysmotility refers to slower motility in any part of the small intestine. Typically, it occurs when contractions are weak or uncoordinated. Symptoms include discomfort, bloating, nausea, or vomiting. Children with intestinal dysmotility can have GJ-tubes that dislodge and coil back into the stomach with greater frequency. They may also have formula in the stomach when being fed into the intestines, when being fed to the intestines without the GJ or J tube being out of place. Food sitting in the intestines for longer periods of time than usual can also lead to small intestinal bacterial overgrowth (SIBO), which can cause bloating, pain, or diarrhea.
Chronic Intestinal Pseudo-Obstruction
Chronic Intestinal Pseudo-Obstruction (CIPO) is a severe form of intestinal dysmotility in which the intestine acts as if there is a physical obstruction, even though one is not present. Food and liquids may not move at all, or may only move a small amount. CIPO can “flare” meaning that it doesn’t always interfere with tube feeds. However, if a child is experiencing symptoms, it may be referred to as a “gut shut down,” and the child may need to be put on “gut rest” until motility improves. Symptoms include pain, bloating, nausea, and vomiting. Children with CIPO may receive separate G- and J-tubes or TPN (Total Parenteral Nutrition), which is IV nutrition administered via a central line.
Large Intestinal or Colonic Dysmotility
The large intestine may also be affected by weak or uncoordinated contractions, leading to colonic dysmotility. The primary symptoms include constipation, bloating, fullness, or fecal incontinence. Causes are numerous, but may include slow transit through the intestine caused by weak or uncoordinated contractions, diet, or problems with the rectum or anal sphincter.
Constipation is difficulty stooling, and typically causes hard, infrequent stools, discomfort, difficulty passing stools, bloating, or fecal incontinence. More information on constipation can be found on our Constipation page.
Dumping syndrome or rapid gastric emptying occurs when contents of the stomach empty too rapidly into the intestines, before they have been fully digested. Early dumping occurs right after a meal, and late dumping occurs an hour or more after a meal. Common symptoms include diarrhea, cramps, discomfort, sweating or flushing, dizziness, and problems with blood sugar control. The most common cause of dumping is post-surgical complications.
Small Intestinal Bacterial Overgrowth (SIBO)
SIBO is an excess growth of bacteria in the intestine, and is more common among children who have motility issues in the stomach and small intestine. When SIBO occurs, parents report a lot of excess gas, distention and bloating that is not easily relieved by venting or continuous venting. There can also be abdominal pain and discomfort, as well as increased feed intolerance. Many times, the breath will smell foul, almost like fecal matter. SIBO can be clinically diagnosed through symptoms or through the Hydrogen Breath Test. For many it is easily treated with antibiotics, but for others it is a more recurrent issue that needs to be managed. Probiotics may be added to help combat bacterial overgrowth.