Delayed Gastric Emptying in Children: Our Family's Experience

Delayed Gastric Emptying in Children

The author's son struggles with bloating, a consequence of struggling with delayed gastric emptying.
The author's son struggles with bloating, a consequence of struggling with delayed gastric emptying. | Source

What is Delayed Gastric Emptying?

Delayed gastric emptying (DGE), or gastroparesis, is also known as a "paralyzed stomach." The stomach is unable to empty its contents at a normal rate, though there is no physical obstruction to slow the rate of emptying.

The condition may coincides with severe gastroesopageal acid reflux disease, or GERD. When the stomach is unable to empty its contents, the food and acid may travel back up the esophagus. This may lead to vomiting.

Our son has severe GERD/DGE and had surgery performed to stop the unrelenting acid reflux. While his Nissen fundoplication stopped the reflux, he still suffers the effects of the delayed emptying. He has struggled to maintain his own growth curve and has been labeled Failure to Thrive. He currently receives supplemental feeds through a gastrostomy tube at night. With the supplemental nutrition, he should be able to thrive and grow once more.


Nausea and Delayed Gastric Emptying

Nausea and vomiting are common symptoms of gastroparesis.
Nausea and vomiting are common symptoms of gastroparesis. | Source

Gastroparesis Symptoms

  • Early satiety: Children will feel "full" after eating only a few bites.
  • Bloating: The abdomen will bloat and become round and hard.
  • Vomiting: Children with DGE will often vomit, and the vomit may contain undigested food.
  • Nausea: A child will often complain of feeling "sick."
  • Weight loss: Children may fall off their growth curve, and become "failure to thrive."

Causes of Delayed Gastric Emptying

In adults, the most common cause of gastroparesis is diabetes. This is not the case with children, who often have an idiopathic (unknown) cause for the delayed emptying. The causes for DGE in children include:

  • Idiopathic
  • Post-viral
  • Diabetes
  • Neuromuscular diseases, including Mitochondrial Disease
  • Cerebral Palsy
  • Prematurity

Some children will have gastroparesis following a bout of rotavirus or other viral infection. In these cases, the gastroparesis nearly always resolves with time,and the child will resume normal eating habits once the body has fully recovered. Other causes of DGE are longer lasting (and may even be life-long).

In the case of our son, the cause of the DGE is unknown. He has several other medical issues, including laryngomalacia, hearing loss, obstructive sleep apnea, severe GERD, mild hypotonia, and amblyopia.

Gastric Emptying Scan

Gastric Emptying Study

A Gastric Emptying Study or Gastric Emptying Scan is a test to diagnose delayed gastric emptying. Unfortunately, there are many methods for performing the test, and even different cut-offs for determining slow digestion.

A small amount of radioactive isotope is placed in the child's food. Some hospitals will perform a "milk scan" and place the tracer in the child's milk. Others will have the child eat eggs or oatmeal, which has a known digestion time. Still other hospitals will have you bring the child's own food and will place the isotope in the food or drink you provide.

Once the child has consumed the labeled food, he will be placed onto a table and a special "camera" will be placed over his abdomen. Images of the tracer will be taken every few seconds for an hour (or two hours, depending on the hospital). The percentage of food emptied will be calculated.

The cut-offs vary by hospital, though generally an emptying time worse than 30-35% after an hour is considered delayed emptying. Our own son had a gastric emptying rate of 27% after an hour at the age of two. As his bloating has increased and his food consumption has decreased, another GES will be performed soon.

Antro-Duodenal Motility Study

Some children with severe gastroparesis may also have abnormal intestinal motility. A test called an antro-duodenal motility study may be performed for these children. There are very few "motility centers" able to perform this test in children at the current time, so this test is not commonly used.

A small catheter is passed through the nose and into the stomach and duodenum (the first part of the small intestine). The catheter will be connected to a computer and a technician will flush it with water. The computer will record stomach contractions while the stomach is at rest and after a special meal has been eaten. A trial of erythromycin or other medication may be used to determine if this aids the stomach's ability to contract. This test takes 6-8 hours to complete and is a difficult procedure for most children.

This test is valuable because it can identify whether the motility problem is caused by a muscular disorder or neurological disorder.

SmartPill for Motility Testing

SmartPill Diagnostic Device

SmartPill Corporation makes a wireless motility capsule that can determine the strength of muscle contractions, pH, and temperature. This "pill" is swallowed and will transmit data for up to five days, and provides information about the functionality of the entire GI tract. The patient wears a data collection device until the pill has passed. Once the pill has passed from the body, the data is collected and analyzed. The SmartPill is an alternative to a gastric emptying scan.

High Fat Foods are Not Tolerated

High fat content will slow digestion, so large quantities of high-fat foods should be avoided.
High fat content will slow digestion, so large quantities of high-fat foods should be avoided. | Source

Delayed Gastric Emptying Diet

All children with gastroparesis will benefit from eating several small meals throughout the day. The following food choices will aid digestion:

  • Eat cooked fruits and vegetables, as this reduces the fiber content.
  • Avoid foods high in fiber, like broccoli.
  • Eat low fat foods, as fat slows digestion.
  • Drink water with meals.

Each child with DGE will have a different treatment plan, so consult with your child's' GI specialist to determine proper food choices for your child. Some children with severe gastroparesis are unable to take any food by mouth.

DGE Treatment Poll

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Gastric Pacemaker Success Story

Gastroparesis Treatment

The treatment options for gastroparesis vary by the severity of the condition. A low fat diet should be followed by all patients with delayed emptying, and the following pharmaceuticals may be used:

Erythromycin is an antibiotic that stimulates stomach contractions. It has variable success - it works well for some children, and is not effective for others.

Reglan (Metroclopramide) is a motility drug used in the United States. This drug has a black-box warning from the FDA, as the drug can cross the blood-brain barrier. A rare side effect is a permanent condition called Tardive Dyskinesia. For this reason, the drug has fallen out of favor.

Domperidone: Not approved for the treatment of motility disorders in the United States, this drug is widely used in Canada and Europe. This drug does not cross the blood-brain barrier and can be a very effective treatment for gastroparesis.

Gastric pacemakers are not often used in children, though the device has been extremely successful for some advanced cases of DGE that have not benefited from more traditional therapies. Candidates for a gastric pacemaker cannot obtain benefit from other, more standard treatments for gastroparesis.

Overnight Feeds via G-Tube

The author's five year old son receives supplemental nutrition overnight via a g-tube.
The author's five year old son receives supplemental nutrition overnight via a g-tube. | Source

Enteral Feeding for Delayed Gastric Emptying

Many children with DGE suffer from early satiety (feeling full despite eating very little), and cannot maintain their weight or growth curve. These children are considered organic "failure to thrive," and must receive nutritional support to grow.

Children who require nutritional support will often have a gastrostomy tube (G-tube) placed. As children who have gastroparesis cannot tolerate large quantities of food at one time, bolus feeding is generally not tolerated. Children may be fed with a pump that delivers small quantities of formula on a continuous basis. Some children may require continuous feeds over a 24 hour cycle, while others will need nighttime supplementation.

For children with extremely severe gastroparesis, the stomach will not tolerate any food at all. When this happens, a jejunal tube (or J-tube) may be required. This tube has a port on the stomach, but the tube extends into the intestine. This bypasses the non-functioning stomach entirely. J-tube feeds must be delivered by pump in small aliquots, so all children with J-tubes require continuous feeds.

The formula used for feeding will vary - some children cannot tolerate common formulas like Pediasure, and will require a pre-digested formula to support nutritional needs.

Our son's gastroparesis causes him to feel full too early, but he is still able to eat food during the daytime. He currently takes in approximately half of his required caloric intake by mouth, and the rest of his calories are delivered by a pump overnight. He had a Mic-Key g-tube placed along with a fundoplication at the age of 4 years, and the overnight feeds go through his g-tube with the aid of a Kangaroo Joey pump.

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Comments 24 comments

teaches12345 profile image

teaches12345 4 years ago

Please give your son a hug for me, he must be such a sweet child to understand what his body is going through. This is an interesting hub on a topic that is sure to generate reader views due to the helpful content. Voted up.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

I will give him an extra hug, Teaches- he actually does pretty well (some children with DGE can't tolerate any feeds into their stomach). He had been losing weight, but with the supplemental feeding he has a lot more energy.


teaches12345 profile image

teaches12345 4 years ago

Good to hear how well he is progressing, Leah. Blessings and prayers sent your way.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

I appreciate your thoughts and prayers, teaches. He is doing well at the moment, and hopefully his stomach will do better once we can get him to a better weight.


Hyphenbird profile image

Hyphenbird 4 years ago from America-Broken But Still Beautiful

This time the pictures made me cry. Your little boy is so precious and sweet. I wish I could take it for him and know you do too. Your information here is incredible. I am impressed with your research. I hope little man is growing and feeling much better now.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

His other physical problems pale in comparison to the tummy troubles, hyphenbird. They are very troublesome at times. He is doing much better now that we have started the overnight feeds, because he can eat (or not eat) during the day, but still get nutrition overnight. This morning, for example, he didn't eat any breakfast because his stomach couldn't handle it. He'll probably eat lunch, but may not eat anything else for the rest of the day. It is a very difficult condition.


watergeek profile image

watergeek 4 years ago

Leah - Here's a diet tip that could help with the bloating part. Proteins and starches create gas when they're mixed together, so: ** Don't eat meat and potatoes at the same meal. ** Separate them. Eat meat with salad one meal and potatoes with other veggies the next meal.

When I stopped eating them together, I stopped getting gas (except for a little when I eat beans). If I eat out at Sizzler I have meat with salad and take the baked potato home. That then provides another meal, topped with fried mushrooms, zucchini, and onions.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

Those are good tips for those who get gas bloat, watergeek. My son's bloating is due to food rather than gas, because his stomach cannot digest the food so it sits in his stomach. We do watch for gas bloating because he has a fundoplication and cannot burp up gases.We have to stay away from high fat foods and foods that create a lot of gas, though nothing truly helps his stomach function better.


watergeek profile image

watergeek 4 years ago

Yikes. I needed to have read your article more carefully - the comment I made has no bearing on it. Sorry 'bout that. It looks like you're doing a great job with your son. I hope he recovers somehow.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

It is a frustrating condition - the stomach is partially paralyzed and simply doesn't work well. Fortunately our son is able to digest some food and we are hopeful he will get better as he gets older - for now, he takes half of his food by mouth and the other half by drip into his g-tube overnight. Gas bloat can be a problem, too, watergeek, so your comment is still highly relevant! We have to limit his dairy intake because he REALLY bloats with a lot of milk!


lindacee profile image

lindacee 4 years ago from Southern Arizona

What a tough road for a little one. When and how was he diagnosed? You have obviously done your research (and then some) on the subject which I'm sure is very helpful in his treatment. Here's hoping he reaches his target weight soon. Great Hub.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

Nolan was failure-to-thrive at the age of one, Lindacee, but it took another year to get a diagnosis. Our pediatrician kept brushing his inability to eat off, and our ENT finally sent him to a good GI doctor. They did a gastric emptying scintiscan, which found the delayed emptying. He had severe (unresponsive to medication) reflux as well. He has since had a stomach surgery called a fundoplication, but the delayed emptying is still there and troubles him. Fortunately he is now gaining weight and thriving with the use of supplemental night feeds!


lindacee profile image

lindacee 4 years ago from Southern Arizona

I assumed it was probably a long, drawn out process to get a diagnosis. I'm am so happy to hear of his progress, Leah! My thoughts are with you.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

It has been a long journey - we are relieved to have a way to help him maintain (and gain) weight again. We also believe he has hypoglycemia, but haven't had him tested (he is completely floppy when he goes too long without eating and spills ketones when sick). Our surgeon is concerned about hypoglycemia, but we're treating him already with the overnight feeds, so we are happy to keep on with the status quo. He's doing well and we are extremely relieved! He gained 3 pounds in three weeks.


hollie jasinski 3 years ago

It was so nice to stumble onto your article. I have a daughter that was just diagnosed with slow stomach emptying. I am so worried about her. She is losing weight fast and the dr's here have no idea what to do with her. They put her on reglan but her tummy hurts all the time and she will not eat. Do you have any avoce for me on what my next steps should be?


leahlefler profile image

leahlefler 3 years ago from Western New York Author

Hi Hollie,

Delayed emptying (gastroparesis) is a real struggle for our family. The trick that worked for Nolan was tube feeding. As horrible as it sounds in the beginning, it has been a literal miracle for our son. He gained 10 pounds in less than six months. He has grown over three inches and his health (in general) has improved. He is fed via pump, as bolus feedings (large volumes all at once) would make him bloat. His pump threads through a small amount per hour. Some children do better with J-tubes, which bypasses the stomach altogether...

If this ever becomes an option for your family, I would go straight to the g-tube and skip the NG tube step. NG tubes are awful and keep the lower esophageal sphincter open, which can increase reflux.

We were offered the choice of trying Reglan, but we were concerned about the black box warning by the FDA, as Reglan crosses the blood-brain barrier and causes tardive dyskinesia in some children. If it works for a child, then it might be a good tool, but if it isn't working then I would question its use. Particularly with the potential side effects.

I know there is a drug used in Europe and Canada that does NOT cross the blood-brain barrier - it is called Domperidone. We don't have it in the USA, unfortunately, but it is a safer drug than Reglan and does work for some.

Nolan has struggled with failure-to-thrive for years and this problem is finally behind us. His button is hidden under his shirt and no one knows it is there. He participates in gym at school, plays soccer, etc. and it doesn't interfere with his life in any way.


Alice 2 years ago

Hi,

I just came across your page trying to find some info. My 2 year old daughter was just diagnosed with delayed gastric emptying. She just had the gastric emptying scan. At 2 hours, she was at 8%, which sounds very low to me. We are supposed to start erythromycin and follow up in a week. She is 23 pounds at 24 months, so she is tiny. She never throws up but she will only eat a few bites at each meal. She is still breast feeding and she seems to prefer this...I think it is easier on her stomach. I am so afraid of the tube feedings. What made your doctor recommend them? What was your son's weight when that was decided? Besides the poor weight gain, she is fine in every way, developing well and happy. I am concerned about her weight and hope that the medication works.


leahlefler profile image

leahlefler 2 years ago from Western New York Author

Hi Alice, my son received his tube at the age of 4 1/2, after years of struggling (and failing) to gain weight. It is the last resort for children with failure to thrive, used when medical therapy and dietary changes cannot help a child grow. Nolan was 19 pounds at the age of 2, managed to gain some weight in the intervening years (high dose PPI coupled with an H2 blocker for his reflux, and a mostly liquid diet). Then he fell off the charts again - he was 33 pounds at the age of 4 and only 31 pounds at the age of 5. His medications ceased to work and he lived life with a metal bowl and frequent vomiting cycles. He had a Nissen Fundoplication done due to cellular changes in his esophagus and they placed the tube at that time. He started tube feeds at age 5. One of the things our surgeon was concerned about was his stunted height in addition to his inability to gain weight. While his development was on target, once the height is stunted, the brain is being deprived of nutrients and calories (the body utilizes calories first for the brain, then for height, then for weight). So if the weight and height are both affected, our doctors become concerned about the effect on the brain. Nolan hadn't grown AT ALL in height for nearly 2 years. At age 5, he was the size of the average 2 1/2 year old. Erythromycin, unfortunately, did nothing for him. We were unwilling to use Reglan because of the black-box warning (neurological side effects) and the likelihood of long-term use for our son (he has a genetic syndrome that predisposes him to gastric emptying issues).

Having the tube placed was a difficult and devastating decision. One that was ultimately out of our hands, as our little boy was quite ill. Since starting tube feeds, he shot up in weight and height. He is now in the 50% range for both weight and height - he grew an INCREDIBLE amount in the first year after starting tube feeds. He is only supplemented.. he still eats orally during the day and we "make up" the additional calories at night. He went from 39" tall to 46" tall in one year. He went from 31 pounds at age 5 to 42 pounds in about 6 months. As awful as it was to make the decision to tube feed, it ended up being one of the best things that happened to our son. He's in a regular first grade class and participates in all sports, etc. It doesn't hamper him in any way. That being said, we certainly hope that one day he won't need the tube anymore and will be able to support himself by eating all food orally.

For what it is worth, Nolan did the best while he was breastfeeding. His weight plummeted once we started weaning - not sure if that is true for all kids with DGE, but it was certainly true for Nolan. I think breast milk is digested the best.. Nolan struggled (and struggles) with solid food the most.


Alice 2 years ago

Thank you for responding! The doctor said the same thing to us, that so far, she is maintaining her height and head circumference so that is good. We are on day 3 of the erythromycin and she actually is eating a little better today. However, we have had times where she eats ok for a day and then the next day, she is back to just eating a bite. I am trying to keep track of everything and hopefully there will be a noticeable increase in her eating. I feel like people have been hassling to wean her from breastfeeding, but I think that she is at least getting good nutrition from this and that it is just easier to digest. I am trying to just do that in the morning and at night so that she will maybe eat solids during the day. I am happy that we have an answer to why she isn't eating, rather than everyone just saying it is a phase. I just hope it isn't a lifelong issue. It sounds like Nolan is on the right track and getting the nutrition he needs to grow. I wish you the best of luck.


leahlefler profile image

leahlefler 2 years ago from Western New York Author

I hope your little girl continues to grow and I hope the e-mycin helps, Alice. Trust your gut and ignore others who hassle you about any decisions you make - you are your daughter's mother and you know her the best. You are the only one who will champion her needs with the passion and love of a mother - it is an exhausting and frustrating struggle sometimes. Some kids do better as they grow - others struggle with gastroparesis for a long time. We are still not sure how long Nolan will need his tube - we hope he will be able to wean from it some day. He is still oral during the day, and that gives us hope. We also have a reason for his struggles now (it took until he was six to get a diagnosis), and with an accurate diagnosis for his syndrome we are able to support him better. Sending you so much love and hugs - this is a tough journey!


Kim 2 years ago

Hi im Kim. My son has had a horrible start to life. He was premie (28 wks). Along and complicated stay in the nicu (pulmonary hemorage 5 chest tubes) also had brain bleeds. As a little boy he struggled with constipation, respatory infection, phemonia, ect. At three he was diagnosed with mild autism. He does have a few developmental delays. Over the past 18 months we have had over 40 admissions for constipation and inpactions. In January he was diagnosed with a lagre intestine thst doesn't fuction (nureopic bowel) he is seven. He had one surgery to help it wasn't secssesfull. So in march they did an ielostomy we spent 35 days in the hospital and had a second surgery in that time for a double bowel obstruction and a recection and ielostomy revision. In june we had another motility study done because he had had a NJ tube since april. And has been vomiting and time he eats even a cheerio and will lay in the fetal position after he eats because his tummy hurts. We are today in the hospital again admitted three days ago. Drs attempeted food and two and a half hours lated he vomitted. Today they did a gastric emptyinh scan and at an hour it was 0 took 82 minutes for anything to go into his intestine at four hours he hsd just 32precent in his intestine. They diagnosed it as delayed stomach empting.they want to stat meds. He is 4ft4inches and only 42lb at 7 years old. Right now he is on tpn for nitrtion started yesterday. He has surgery on his ielostomy scheduled aug 26. He takes 11other meds rightnow I really don't want another med. He has to take one to help hom pee because the nureophathy also affects his bladder. He has lost 35 precent of his body weight in less then a year. Mother to mother what is your thoughts on placing a j tube to keep up nutrion I this situation l. He has been through so much and so many lets try this and hope for different things and they never have worked. I am very leary about more meds.


leahlefler profile image

leahlefler 2 years ago from Western New York Author

Kim, I understand the worry about more meds. We were offered Reglan for Nolan, but the side effects (black box warning) steered us away from the drug. I didn't want to try it. I would have been willing to try Domperidone, but we aren't able to get that drug in the USA (it is MUCH safer than Reglan and is used in the rest of the developed world). Nolan's gastroparesis is not as severe as some children, as he is able to take formula via g-tube. I know several parents who have J tubes and their children are thriving with them. One of my close friends has a G-J tube (by AMT) and they can vent via the G-tube if his stomach gets too full. They feed (continuous) via the J-tube. You can have a button-style for the G-J's or the J tubes as well, but they have to be placed by interventional radiology. A J tube would certainly be worth a try - it couldn't hurt, and if it doesn't work out well, then you could return to TPN. Sening you huge hugs as it is absolutely exhausting and overwhelming trying to sort out all of the difficult choices to make with a complex kiddo.


Cecelia Meadows 2 years ago

Thanks for sharing. Hugs to your little man!


leahlefler profile image

leahlefler 2 years ago from Western New York Author

He is much more stable at this point in his life, Cecelia! We are fortunate - he is tube fed for 50% of his calories, but we are able to avoid stomach pain and bloating for the most part. He doesn't eat very much at a time, but with the use of the pump overnight, he gets the required calories without having to deal with the pain and bloat. My other son was also just diagnosed with delayed gastric emptying, so both of my kids struggle with reflux and DGE.

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