Adventures In Tube Feeding: G-Tubes & Autism Part 2

Will surgery

Recently, I shared the news that my nine-year-old son just spent 11 days in the hospital due to severe feeding aversion issues that resulted in life-threateningly low potassium levels. So, what is a feeding aversion?

Feeding aversion is different from being a, “picky eater.” Picky eaters can, with time and encouragement, work through their challenges and habits. And, more importantly, a picky eater who gets hungry enough, in the absence of his or her preferred foods, will eventually eat something else. A child with feeding aversions, however, is different. Feeding aversions are a much more severe situation (although having a very picky eater is a big challenge and one that sometimes requires a lot of work for parents). A child with feeding aversions may interpret food textures as painful, may have Obsessive-Compulsive Disorder involvement, may have sensory processing issues or digestive problems, or may have any other number of complicating factors that exacerbate the situation. And no matter how hungry a child with a severe feeding aversion is, s/he is not going to eat a non-preferred food. This was the case with my son, Will. He narrowed down his eating habits so much that, despite our best efforts, he got himself down to one food, and this led to dangerously low potassium levels and a hospital stay.

During the first three days in the hospital, I badgered every doctor we met for a GI (gastroenterology) consult because, while the pediatric team was doing an excellent job of getting Will’s potassium back up to a healthy level, it was clear that once we got home, the underlying issue of severe feeding aversion would remain, and we would bounce right back.

Medical ID tags G-tube

In addition to the fact that the feeding aversion would take months, possibly years, to overcome, I was concerned that Will might have some kind of underlying GI issue that precipitated the current hunger strike, and I wanted help ruling out any physiological causes for the situation. With autism, people are very quick to attribute all unexpected behaviors to autism and the OCD that comes with it. So they were thinking Will was simply fixating on a single food. But the truth is, there is usually a reason for such behavior, even if it’s not one that makes sense to a typical person. I wanted to figure out if some type of GI problem was at the root of all of this.

I thought the GI doctor would recommend an endoscopy, maybe some further lab work, or something of that nature. I was, therefore, completely unprepared when the Attending Pediatric GI Specialist walked in, examined my son (whose chart he had been following for a day or so), and told us that Will needed a feeding tube.

Now, Will is 9. He was diagnosed at my insistence at age 2 back in 2007, when hardly anyone got an autism diagnosis that young. So we’ve been living in Autismland for 7 years, and while I have heard of kids with autism having feeding challenges (and we’d obviously experienced it), I had never, ever heard of a child with autism requiring a feeding tube. Even working at Lauren’s Hope, where I have the opportunity to speak with special-needs parents on a regular basis as they ask what to engrave on their autism medical IDs, I have never had someone mention autism and feeding tubes in the same sentence. I was really thrown for a loop. 

First, the doctor recommended an NG tube. I only knew what that was because we so often engrave gastric bypass medical ID bracelets with, “NO BLIND NG TUBE.” So I knew that this was a nasogastric tube that goes through the nose and esophagus and into the stomach. (Incidentally, the reason people who have had certain weight loss surgeries cannot have blind NG tubes – tubes placed without a lighted scope – is due to their altered anatomy.). For a child with sensory integration dysfunction, having a tube down his throat all the time just wasn’t going to fly. He would be less likely to eat, not more, and it would be incredibly easy for him to pull out.

Microvasive G Tube PEG

The other option was a gastrostomy tube, or G-Tube. This one, honestly, scared me. This was a semi-permanent option requiring general anesthesia and surgery. G-Tubes come in several different forms, but the general gist is that there’s a “button” on the outside of the abdomen that connects through to a mushroom-shaped port on the inside of the stomach (See photo at left. The left-hand portion is situated inside the stomach. The tube connects it to the valve/button on the outside of the body. The blue-tipped tube on the right is a feeding extension through which the liquid food can flow.). This would allow us to get nutrients into Will’s body, restore him to good health, and keep him healthy while he goes through the long road of feeding aversion therapy, which, until this point, I didn’t even know existed.

Scary as it was, I immediately knew the doctor was right. Will had lost five pounds in a short period, and when that’s 10% of your body weight, that’s a very big deal. At age 9, when the average boy weighs 61+ pounds, Will was just barely 48 pounds. He had always been small. But now it was something altogether different. Will was feeling better after a few days in the hospital, sure, but he was still in very real danger.

Once I got over the initial panic attack of this latest twist in the very curvy road that is our life with autism, I set about educating myself as much as possible on feeding tubes so that I could start asking the right questions. My first step was contacting Julie Bombacino, a Lauren’s Hope Medical ID Jewelry customer whose new company, Real Food Blends, makes whole food options for tube-fed people.

I had gotten the doctors’ perspectives. But I needed a mom to tell me, from a practical day-to-day standpoint, which of these options was going to be better. What’s the difference between microvasive and mic-key? Do we want to get a tube first and then a button or go straight to the button…which is still called a G-Tube? I was sleep deprived, overwhelmed, and so very blessed at that moment to have Julie’s invaluable input.

Fall seven times, stand up eight.

It was also just so nice to talk to a mom who could tell me that, yes, this really was a good thing. Julie put it in perspective. “You’ll be able to really nourish your son,” she said. “And that feels so great, especially when you’ve struggled with it for so long. The G-Tube will give you some breathing room while you help Will get healthy.” Instead of looking at this as Will having a big scary surgery, I started looking at it as a tool. We will have this G-Tube for a while. The hospital folks said 6-12 months, maybe a little more, so we think 12-36 months, just knowing our son (our pediatrician and therapists agree). We will use this tool as long as we need to, and then we’ll move on.

And now that we’ve been home for a few days, I see that Julie was very right. I can feed Will. I can nourish him. I am watching his color come back to normal and his face fill out and his digestion improve and his mood elevate. I’m watching his personality return and hearing his infectious giggle. And it’s all because we opted for the G-Tube. It hasn’t just saved Will’s life. It’s saved our family. 

*This is a multi-part blog series in which I will share the whole story of our switch to G-Tube living. Please feel free to ask questions, and I will be glad to answer. If I cannot answer, I will do my best to obtain an answer from a qualified source. Please be sure to subscribe to the Lauren’s Hope blog in the right-hand margin so you can always stay up to date with all our latest articles. 

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  • Our second autie had no sense of hunger or thirst and required a life saving PEG when he was 6 years old. (He had iron deficiency anaemia, chronic dehydration with sunken eyes and keto acidosis, was skeletal.) In fact, his gastroenterologist said that he wouldn’t have lasted the year. Fortunately, the new wave of gastrostomy tubes had just been brought to Australia courtesy of a mother, who was a GP, and who sought the new technology for her son. (I was a trained paediatric nurse and my memories of gastrostomies in the early 70s were red rubber tubes with a spiggot, clamp and sutured in situ.) So, in 1992, son had his big op and we haven’t looked back. It saved his life. The 2 cal/ml feeds were perfect….we had to add an extra can a day of Abbotts formula as he was hyperactive! His regular PEG was a BarD Button which we replaced every year under GA. When he was around 14 years old, he was put on Risperadone for anxiety and two years later, he began to nibble on strong smelling food – grated Parmesan, tuna, raw onion and parsley. His breath stank! He gradually wanted a small meal over time, then some icecream….all the while he was on Risperdal which has the side effect of appetite enhancement. As his oral diet increased, his enteral feeds correspondingly, decreased. After one leaky valve episode last year, we decided to monitor his general condition without any feeds….he maintained his weight so we removed his PEG after 25 years of feeds. He will remain on a Risperdal medication as we don’t want the risk of having to go back to square one, now that the ostomy has been shut with an Avesco clamp. All good. 🙂
    PS His older autistic brother is a binge eater. And the third autistic son has moderate eating issues too and couldn’t chew until he was six. He is very healthy and lives on Vegemite sandwiches with some other narrow food likes.

  • Thank you for this post! I know you wrote it years ago, but I am going through this now with my 5 year old. Her tube surgery is in 1.5 weeks. It is very scary , but I know in my heart it is the right thing. I will be able to get the nutrients into her, and I’m hoping, like you, that some other challenges will settle down a little. I am also in the position where I am unable to get her medications into her. The doctor mentioned a tube to me a year ago. She is now 5 and weighs only 30 lbs. Nutrition has her listed as ‘malnurioushed’. A head thing to hear.

    • Hi Lucinda! I know it’s so scary, but I am so very happy for you that your daughter is going to get the surgery and help she needs! Getting our son’s g-tube 100% saved his life, and while we were petrified during the whole process, it truly changed our lives. Sending best wishes to you and your family for a successful surgery and healthy days to come!