What to expect before and after your child’s G-tube insertion
So, you’ve finally decided to get a G-tube for your child. Arriving at this point in your child’s feeding journey can be a relief. Others may feel some regret.
Either way, says Karen Ellis, mother of a 2.5-year-old who recently got a G-tube, getting a G-tube can make life a lot easier for children with pediatric feeding disorder (PFD) and their parents. After a minor procedure, a short recovery and months of stress-free feedings, Ellis and her family are confident they made the right decision for their son.
G-tube insertion, or gastrostomy tube insertion, is a medical procedure where a tube is placed through the abdominal wall and into the stomach. This allows caregivers to deliver nutrition and medications directly into a child’s stomach. Some kids with a G-tube use it to supplement oral feeding. Others exclusively eat and drink through the device.
Learn more about the benefits for kids with PFD of G-tubes in this blog: Does your child need a G-tube? Here’s what you need to know.
Ellis’s son, Ishan, gets most of his nutrition through the G-tube. He eats and drinks orally as well. Ellis offers insight into what parents can expect from the G-tube procedure and the few months after it.
What to expect before the G-tube procedure
Ishan had an NG tube for a longer period than typical, says Ellis. Running after an active toddler to replace the tube whenever it fell out was a constant struggle. Since birth, Ishan has struggled with eating due to gastrointestinal issues and silently aspirating. He was often sick, didn’t eat age-appropriate amounts and was slow to gain weight. His parents pushed Ishan’s providers to consider a G-tube, but they were told their son might grow out of his feeding issues.
At this stage of the PFD journey, Ellis says following your instinct as a parent is essential to advocating for your child’s needs. “They wanted to blow everything off as normal parenting or a simple therapy issue, but knowing as a parent that there continues to be something wrong means you have to keep pushing,” she says.
What gave Ellis clarity, she says, was knowing they were trying hard enough. “He was doing his best, we were doing our best, but still, something was not quite right.”
What to expect during the G-tube procedure and recovery
For Ellis, the hardest part of the G-tube procedure was knowing it was elective surgery that required hospitalization. By the time Ishan was scheduled for surgery, Ellis knew it was necessary, but she still felt they had made a choice. Ishan’s procedure and recovery both went smoothly.
Like most kids, Ishan spent one night in the hospital. Ellis says he did experience some pain that first and second day. Ishan received pain medication and lots of TLC. They held him the whole time at the hospital and watched his favorite programs.
By day three and four, Ishan was back to running around and doing his typical gymnastics flips. He returned to his normal toddler antics in less than a week. “Kids are resilient, but we tried to hold him back from too much activity right after surgery,” she says.
For two weeks, Ishan had to skip his baths and only have sponge baths. In general, swimming in the pool or ocean tends to be okay, but lakes and rivers can be problematic.
Watch the skin around the G-tube because that can start to look angry and red initially. You can learn more about feeding tube care using What You Need to Know Now: A Parent’s Introduction to Tube Feeding. This resource, also provided in Spanish, was provided by the Feeding Tube Awareness Foundation with permissions to share.
What to expect in the months after a G-tube procedure
Adjusting to G-tube feedings takes some trial and error for parents and kids. Even months later, G-tube feeding requires adjustments when a child is less hungry due to an illness or more hungry due to a growth spurt. In the beginning, says Ellis, it’s important to go low and go slow with feeds.
At first, Ishan hesitated to let anyone touch his stomach, so his parents made buttons for his favorite stuffed animals. They fashioned these themselves, but you can also buy them. Ellis showed Ishan how opening and closing the button doesn’t hurt. They spent a lot of time talking about the button and getting used to it before diving into feeding.
Ellis also spent some time getting used to feeding her son through the tube. Overfeeding can cause vomiting or an upset stomach. She keeps a towel in the car in case of any incidents. “It’s hard to guess how much a toddler wants to eat. It’s never a perfect science,” she says.
Ellis offers three tips for G-tube feeding
- Find the formula your child tolerates best. Like baby formula, G-tube formulas come with different ingredients. The Ellis family found that the vegan formula has been better for Ishan than the milk formula.
- Stay consistent with oral feeding when applicable. Ishan eats orally two times a day. They do this before tube feeding so that his stomach isn’t full.
- Use a backpack. Cute feeding backpacks allow busy toddlers to run around independently during feeding sessions. Ellis tapes the tubing to the back of Ishan’s shirt or pants so it doesn’t come out while he’s running around.
These days, Ishan is happily playing and growing, and his parents are confident they made the right decision to get a G-tube. Ellis says it’s helpful to consider the G-tube feeding experience with PFD more like a marathon than a sprint. This can be harder for parents than kids, who tend to be more resilient. “As long as the kid is pretty happy and healthy, we’re the ones who are more stressed,” she says.
For more support in your G-tube or pediatric feeding disorder journey, check out our peer-to-peer mentoring program.
When your child needs feeding therapy for pediatric feeding disorder (PFD), navigating the system to access treatment can be challenging. If your pediatrician recommends feeding therapy, the following are some tips for how to find the right match.Understand the role of feeding therapists
Feeding therapy requires additional training that neither pediatric speech and language pathologists (SLP) nor occupational therapists (OT) typically learn in graduate school. Look for a clinician who has obtained this additional training and has been mentored by another experienced feeding therapist.
Both SLPs and OTs can be qualified to provide feeding therapy. There are times when one discipline is better equipped to support your child than the other.
SLPs have extensive knowledge of swallowing, chewing and the oral motor part of feeding therapy. If your main concern for your child is choking or chewing, speech therapists are best equipped to help.
An OT is an expert in sensory issues and texture aversions. If the feeling of food in your child’s mouth, combining foods or picky eating are the issues, look for support from an OT.
Even in the initial feeding therapy evaluation, you might want to request one specialty over the other. If you’re unsure, let the intake team know your feeding concerns. They should be able to match you with the right therapist.Check your insurance benefits
In many cases when a child needs feeding therapy, the referring physician will not indicate whether the therapist should be an SLP or an OT. In some cases, though, your insurance will specify coverage for one or the other. It’s a good idea to understand your benefits before requesting a therapy intake evaluation.Set expectations from the start
To get the most out of feeding therapy, share your goals from the start. Even during the initial evaluation, it’s important that you and your child’s therapist have aligned goals. For example, if your child responds to a specific approach or personality, be sure to share that. In many cases, therapists can adjust to match your child’s needs. Part of the therapeutic use of self is learning to gauge and meet children where they are.
Feeding therapists have to be flexible. This means goals should be fluid from the start. If your child isn’t reaching their therapy goals, it’s time to adjust them. If your child has a setback, like a hospitalization, you may need to change your goals entirely.Find out how to be a partner at home
As feeding therapists, we only have one hour a week to work with a child. That’s why we typically ask parents to join us during sessions so you can continue the therapy at home. As much as parents need breaks built into the schedule, therapy is not the ideal time.Expect collaboration
From the start, feeding therapy is collaborative. During the initial evaluation, you’ll set goals and therapy expectations together with the therapist. You should also expect your therapist to work closely with any other clinicians who support your child.Know that feeding therapy is not linear
Unlike the progress you might see in speech therapy, for example, feeding therapy tends to progress at a slower pace. Overall, you’ll want to see an upward trajectory of progress in feeding therapy, but it’s normal for your child to have ups and downs. What you don’t want to see is a plateau over time.
Don’t be surprised if it takes time to see progress in feeding therapy. Some kids are slow to build rapport and feel comfortable with a therapist. If your therapist is answering your questions, being collaborative and is confident in their approach, be patient.Don’t be afraid to pivot if it’s not working out
If you’re not seeing positive progress over time or if your child’s feeding therapist isn’t a good fit, be sure to raise these concerns. In many cases, the feeding therapist can make improvements.
If results don’t improve, your child may need support from another therapist. Try switching therapists to see how your child responds. If that doesn’t help, your child may need support from another discipline entirely –– such as a gastroenterologist or a psychologist.
Consider the following questions and answers for a potential feeding therapist:
Q: How long have you been seeing and treating children with pediatric feeding disorder? A: Look for someone with at least a few years of experience.
Q: Are you familiar with the Pediatric Feeding Disorder Consensus Definition and Conceptual Framework article published in the Journal of Pediatric Gastroenterology and Nutrition? A: If not, look for someone willing to read the article.
Q: Do you have specific education and training regarding pediatric feeding disorder? A: Look for someone who has additional training to understand the issues.
When therapists finish school, they usually don’t just jump into feeding therapy. Feeding is a specialty within speech therapy and occupational therapy that requires additional training and guidance under an experienced feeding therapist.Q: Have you seen a child who’s had a similar experience?
A: Finding a therapist familiar with your child’s specific feeding challenges is important. Don’t be afraid to ask this specifically to be sure you’re comfortable with the answer.Q: Describe your overall approach to pediatric feeding disorder.
A: Look for someone who understands the medical, nutrition, feeding skill and psychosocial domains and is willing to collaborate with a multidisciplinary team.Q: How do you determine if a child is growing well? A: Look for someone who follows your child’s growth pattern, not just a standard growth chart.
Q: How do you share the results of diagnostic testing, treatment goals, and other information with me and other providers treating my child? A: Look for a practitioner who partners with professionals in other disciplines and keeps open lines of communication with them as well as with you. Make sure they are willing to provide you with copies of reports and take the time to go over reports with you.
The way pediatric feeding disorder (PFD) manifests in each child is as varied as the children themselves. But so many stories of parenting children with PFD are the same.
An infant struggles to feed and gain weight. Parents work tirelessly to feed their children and juggle medical visits. They search in the dark for a diagnosis of a complex problem they don’t understand, all while feeling alone and at fault.
Raising a child with PFD is a journey that rarely has a final destination. With the right support and care, it does get easier. This is the story of one mom of a son with PFD and how she’s gone from seeking help to supporting others.
One family’s journey with PFD
From the start, Erin Avilez’s son, Julian, struggled to breastfeed and gain weight. Her doctors were concerned about her baby’s measurements throughout her pregnancy. When her amniotic sac fluid was low, Avilez was induced at 37 weeks.
Julian was born at 5 pounds and right away had trouble sucking and taking in enough food at each feeding. Avilez switched to bottles, but Julian continued to undereat. “Within the first few months, there were already red flags that he was underweight and not getting enough nutrition,” she says.
Avilez and her husband started by switching formulas to see if Julian had some sensitivity to some ingredients. Still, they didn’t see much weight increase. Things got worse when her pediatrician sent Julian to a pediatric gastroenterologist. “That’s kind of where the horror of the story started,” she says.
Julian’s pediatrician and the GI weren’t communicating or working together and sometimes had different goals. “The GI’s only goal was for Julian to gain weight and cared less about how it affected his feeding,” says Avilez.
Julian got a nasogastric tube (NG tube) at three months old. The increase in calories made him vomit a lot, and he regularly pulled the tube out. Any time he pulled the tube out, Avilez would have to call her husband to come home from work so the two of them could force the tube back in. Insurance only covered a few tubes, making this devastating ritual even more difficult. Julian developed an oral aversion that he never had before and wouldn’t even let his parents touch his face. By seven months, Avilez insisted the NG tube be removed.
When Julian’s GI recommended a gastrostomy feeding tube (G-tube) instead, Avilez knew they needed a second opinion. Julian took some formula and solid foods orally, and Avilez thought they could build on that. A new GI at Phoenix Children’s Hospital agreed.
With a new pediatrician and GI, Julian’s doctors started working on finding a diagnosis. He was also able to join their intensive feeding therapy program. “The new GI doctor we saw listened, and he offered empathy and support,” says Avilez.
When Julian was 3.5, his family finally got a diagnosis of what caused his pediatric feeding disorder. A liquid and a food study showed that he has gastroparesis, a condition where the stomach muscles do not work properly to empty waste.
Now that Julian has a diagnosis, he’s able to take medication to help his gastric delayed emptying, as well as an appetite stimulant. He also drinks Ensure Clear to add more calories to his diet. Julian has an aversion to any formula or dairy because of his early experience with the NG tube.
In the past six months, Julian was finally registered low on the weight chart for the first time. “This is huge for him,” says Avilez.
Still, says Avilez, their struggle is never far from her mind. She dreads visits to the pediatrician when she knows Julian will be weighed. “Even today, a week before his appointments, I start getting stressed out because I know we have to get on the scale,” she says.
Finding support from other families with PFD
Julian was born during the pandemic, and Avilez left her job as a social worker to take care of him and to get to all his appointments. She suffered from postpartum depression and felt overwhelmed, alone and isolated.
“I knew there has to be some type of service out there to help moms like me,” she says.
Avilez searched online and found Feeding Matters. She requested a peer-to-peer mentor and was matched with another mom who shared her experience. That empathy was powerful. “She listened to me. The first time I got off the phone with her, I started crying that somebody understood what I was going through,” says Avilez.
Avilez’s mentor also told her she was doing a great job. “Throughout this process, nobody told me I was doing a good job, not the doctors or anyone on his care team,” she says.
Avilez’s introduction to Feeding Matters was the first time she learned about PFD. “I felt so validated that we weren’t the only ones concerned about not knowing what was going on with our son and not hearing about it from our doctor,” she says.
Today, Avilez is a peer mentor to other parents raising a child with PFD. She’s grateful to have support and to be able to pay it forward. Her hope is that more clinicians and hospitals will inform parents about PFD from the start. “I wish that when you have a child with feeding difficulties, someone from the start would offer resources,” she says.
Key takeaways for supporting your child with PFD
Avilez offers the following advice to parents raising a child with PFD.
- Find a supportive care team: If the doctor’s not listening, find a more supportive provider. Having a good team in place makes all the difference.
- Trust your instincts: It’s okay to get a second opinion and ask questions. Keep advocating for your child because you know your child best.
- Find friends, family or a peer mentor: Find someone who will listen and understand so that you feel less alone.
After 8 years as an educator in the public school system, I have worked with a handful of students who have pediatric feeding disorder (PFD). The students I supported fell under broad spectrums of disability, and that does not exclude the spectrum that exists within PFD. Some children had g-tubes that required nursing accommodations and/or 1:1 aides; some had sensory sensitivities that made for a very limited selection of preferred foods; some children had to be spoon-fed with their food cut up and watched carefully for choking, gagging, etc.
It was a world that, for a long time, I generalized as “SpEd World.” It wasn’t until two years ago, when I learned about PFD through Feeding Matters, when I realized that PFD in many ways is a world of its own.
I wish I could say that PFD was something I was taught about in my college program; it was not. I wish I could say that I felt fully knowledgeable and prepared to support my students who had PFD; I was not.
On the very first day of school as a first-year teacher, I was face-to-face with a child who had PFD. There were times throughout the year, when I saw her sweet face become instantly distressed when she ran out of food in her lunchbox. It contained the only three things she ate: pureed fruit/vegetable blends (but only banana-apple-pear, sweet potato, and butternut squash… Other flavors, she would not eat and would know upon simply opening the puree pouch that it was not her safe foods), Nilla wafers, and vanilla-flavored milk.
Her parents packed what they knew to be a typical day’s worth of food for her, but on days when she was particularly hungry, she would eat through it by our scheduled 10:30 lunch, leaving nothing for 1:30 snack. She cried and screamed, and my heart just broke. I did everything I knew to do – offer her comfort, and offer her snack options from my cabinet. At the time, I did not know how specific and restrictive her diet was. Looking back, and knowing this student so well now, I realize that I caused even more distress in doing this. Her parents were amazingly accommodating, and we worked out a system to have extra supplies at school for her.
I tell this story not to discourage anyone, but to simply make the point that all teachers – even special education teachers, who have been trained in how to legally accommodate for a variety of unique needs – still need to be educated on pediatric feeding disorder. We know that roughly 1 in 37 children under the age of 5 in the United States are diagnosed with PFD; that means that there’s roughly one kindergartner in every classroom in America who has a diagnosis that we teachers know very little about and likely will not know how to accommodate.
The heart of a teacher is that of a giver, someone who wants to serve children and families and affect positive change in their community. In this way, we align beautifully to the heart and mission of Feeding Matters. We cannot, however, serve children and families without a growth mindset. We must always be seeking to learn new things, to improve our practice, and to gain a better understanding of the children we serve. PFD is one of the areas of knowledge that we teachers generally lack in, and this needs to be addressed.
I came to learn about PFD on my own terms, after gaining more and more students who fell into this category. I found Feeding Matters specifically when a student with a g-tube entered my classroom, because I felt I needed to know more in order to ensure his safety and wellbeing.
While it is amazing that Feeding Matters provides so much in-depth information, it is up to us to seek it out. I hope that we can integrate PFD into field programming at universities, not just for special education but for all educators across all specialties (because I know several students who are out in their grade-level classrooms with PFD as well!). Teachers should be prepared to serve these students, and this is the first step.
Below is a list of concepts that I feel should be included in educator academia:
- Definition, signs and symptoms of PFD
- Meaningful accommodations for PFD, (i.e., nursing services) and how these accommodations are written into IEPs/school documents
- Peer-reviewed research on how PFD affects development, including how their learning may be specifically impacted
While these are somewhat basic, this information is essential for teachers to effectively educate, advocate, and accommodate their students who have pediatric feeding disorder. With this as a solid foundation, we would be making a better world for children with PFD. And isn’t that the whole point?
Parents have provided permission for their student’s story and photo to be shared here.