A Journey to Proper Nutrition:
Learning to Thrive through Food Trials and Tube Feeds
by Jennifer Peterson
Learning to Thrive through Food Trials and Tube Feeds
by Jennifer Peterson
During infancy, it became clear to us that our son Thomas was allergic to some foods, experienced reflux and had problems with maintaining a good appetite. Hindsight has allowed us to understand that he had these issues at birth. As I described in my article "Mito Plus: One Family's Experience with Mito, Autism, and Eosinophilic Disease," Thomas has multiple diagnoses of reflux disease, multiple severe food allergies, Eosinophilic Gastroenteritis, high-functioning Autism and Mitochondrial Disease. These various conditions manifested themselves as a poor suck reflex during nursing, poor sleep habits due to his reflux and irritation of the GI tract that impeded his appetite and ability to absorb nutrients.
All of these issues led his pediatrician to classify his overall nutritional condition as Failure to Thrive. The story below is how we transformed Thomas from "failure to thrive" to fully thriving.
From Breastfeeding to a G-Tube
Despite our due diligence in attempting to provide what we thought was the best possible ways to feed Thomas, nearly all of our attempts failed. I chose to stay at home and engage in the practice of Ecological Breastfeeding, which was nursing on-demand at all times. Thomas was very content to follow this, as his delicate stomach was soothed only by my milk. Once nursing was successfully established with the assistance of a nipple shield, he refused any bottle of pumped milk, most likely due to his weak mouth muscles.
Months ticked by and he was losing ground on the growth chart. His birth measurements put him at the fiftieth percentile for weight and height; however, within six months he was under the fifth percentile. Not knowing the underlying causes of his medical status, I took the news very personally, thinking "failure to thrive" pointed toward my ineptitude as a mother despite being at his side almost 24/7. We sought assistance from a nutritionist and tried tactics such as adding canola oil and powdered formula to his baby food. Given his inability to palate more than ten Cheerios at a time, this also failed.
When we received the news that Thomas suffered from Eosinophilic Gastroenteritis, we were relieved that certain things were out of our hands. It was not our fault. No matter what tricks we tried to pack on the pounds, they would not work in the long run. Knowing that Thomas' system could not successfully handle anything but proteins broken down into amino acids, we were told to give him elemental formula.
Brands of formula such as Neocate are generally unpalatable to the majority of the patients who must ingest elemental formula to maintain health. Our pediatric gastroenterologist asked that we try having him drink the formula throughout the day for two weeks. It was a struggle to have him sit in front of his Baby Einstein videos and choke it down. We also pondered whether he was associating food with pain at his tender age. Thomas lost more weight and was at the tipping point of being hospitalized for malnutrition.
Thomas at 18 months and 17 pounds, within days of inserting PEG tube
The next step would be to insert a NG tube, a feeding tube through the nose, which failed miserably. Due to his sensory defensiveness (not yet knowing he was on the autism spectrum), Thomas yanked the tube out twice while at the doctor's office. Our hand was forced and we opted for insertion of a PEG tube, a G-tube placed endoscopically. This was four years ago to the month. I remember watching the 2004 presidential debates while Thomas slept soundly for the first time in his life from the Morphine while recovering from the surgery.
When we arrived home from the hospital, we had a rude awakening between the lack of instruction for using the Kangaroo Pet pump, troubleshooting errors, mixing the formula and administering it, and venting stomach gas. Our way of life had drastically changed for the benefit of maintaining our son's health. Tube and stoma care were near the top of the long list. For three months until we could get the Mic-key button, I feared bath time as Thomas loved to flail and splash in the water and there were times I thought he would accidentally dislodge the PEG.
Within a month's time, despite the rigors of becoming acquainted with this new feeding method, Thomas' health had improved dramatically. He gained five pounds and had much more energy than we realized, now that his body was given the chance to receive proper nutrients. Thomas now slept through the night, as did I. It was amazing to feel my own energy return and to finally feel rested and safe to drive! Another added benefit of having the tube included the ability to give all of his medication through it. We avoided the fear he would have otherwise experienced with receiving his medicines orally.
Thomas, Age 2
Food Trials...and Tribulations
About four months after going formula-only, a standard treatment for Eosinophilic Disorders, Thomas' doctor decided it was time to commence food trials to see how Thomas' body would react. One of the first trials consisted of bananas, then carrots. Each trial was to last three weeks. Not wanting to lose familiarity with eating by mouth, we were letting him eat any form of these foods as long as we did not add any extra ingredients that might cause a reaction.
We were shocked that within a short time he developed even more sensory difficulties with eating. The main trait we noticed was that Thomas would start gagging whenever a spoon touched his tongue. Later that year, he would be diagnosed with Autism. If we had to do it all over again, I would have planned to have him spoon ice chips into his mouth while he was 100% tube fed, in order to keep from developing any more oral defensiveness and to keep his mouth muscles active.
In later months, we ran food trials for gelatin and a second try at bananas. This time around, I was armed with an ever-evolving food trial diary, as shown below. The symptoms and behaviors Thomas exhibited during these trials were confounding and often confused with regular illness or weather changes. His autistic behaviors and reflux increased to varying degrees. Depending on the severity of the systemic rejection of the food, he also complained of joint pain. This food journal allowed me to sort out which symptoms and behaviors were food-related, and which were likely part of his Autism and other medical issues.
Sample Food Trial Journal
Food Trialed _________________________
|Date||Time||GI Symptoms/ Health||Face||Bottom||Behaviors|| Overall Mood/
|GI Symptoms/Health:||Face Condition:||Behaviors:||Overall Mood/Condition:|
|1 Refluxing (gag face)||1 Clear||1 Kicking/hitting||1 Great|
|2 Vomiting||2 Hives||2 Increased Autistic Behaviors||2 Good|
|3 Crying at end of meal||3 Petechiae from straining||3 Increased Head butting/banging||3 Subdued|
|4 Gulping air / gasping||4 Other||4 Increased General defiance||4 Moderate/Recovering|
|5 Hiccups||5 Extreme preferences||5 Lethargic|
|6 Large, scary burp||Bottom Condition:||6 Crying||6 Bad|
|7 Very liquefied BM||1 Clear||7 Night waking||7 Really Bad|
|8 Acidic BM (painful)||2 Red & Spotty||8 Other||8 Worst|
|9 Constipation||3 Ring Rash|
|10 Increased Mucous in stomach||4 Butterfly Rash|
|11 Increased Yellow stomach fluid seen during venting||5 Red Perineum|
|12 Increased Gassiness / need to vent during feeding||6 Burning rash|
Once Thomas started school, we had to decide whether to focus on food trials or his education. Ultimately, it had been proven that a food trial failure would affect Thomas' ability to be ready to learn and perform schoolwork. Several of his therapists and school staff witnessed how his health and behavior plummeted with each trial. His doctor agreed to shelve food trials until his digestive tract had cleared of eosinophils.
Whenever we agree to restart food trials we will introduce foods through his tube instead of orally. This way, if there is ever a food he loves and we must remove due to systemic rejection, it will be less traumatic for him. He was very sad the time we had to stop the Jello trial, as it was the only thing he found palatable.
Needs to be Addressed
As time wore on and Thomas returned to 100% elemental formula, he experienced constipation, a common complaint among people on elemental diets. He also displayed more gassiness, discomfort, and bilious vomiting, especially during illness or psychological stress. The ability to see the color of his stomach contents gave us valuable information about Thomas' overall health, which would not have been possible if he were strictly drinking the formula. In the absence of vomiting, we could determine that something was wrong when the fluid started turning a deep shade of yellow.
After several bouts of severe constipation that also slowed digestion, Thomas was given a GJ tube that delivered his formula into his intestine. His gastroenterologist also prescribed the use of Farrell bags to relieve the pressure of gas that results from the digestive process. Both of these changes resulted in further weight gain and overall ability to fully receive his daily nutrition requirements. Thomas has benefited from these interventions even further by keeping his formula down during times of illness. When Thomas previously had his G-tube, he would become dehydrated and lose weight from vomiting the contents of his stomach. Now that his fluids are delivered lower in the digestive tract, only a small amount of stomach acid comes up.
The Journey Continues
Even though the occasional glitch with feeding our son pops up, all of us are prepared to roll with the punches. Thomas has since started Kindergarten and is doing quite well. He is increasingly aware of the differences between himself and other classmates. However, he is in a school environment that respects and celebrates everyone's unique perspective. Even yesterday, his teacher informed me that a couple of his peers took it upon themselves to tote around Thomas' bulky feeding pack as he walked around the room for different activities. We are patiently awaiting the repair of his smaller feeding pump so he is able to be more mobile. The kindness of his friends makes me feel more positive about a successful integration into the school environment. His teacher believes that this has already occurred.
Jennifer Peterson is an at-home parent and uses her experience as a Paralegal to ensure the medical and educational needs for her children. Her son Thomas is a delightfully complex child with the diagnoses of multiple food allergies, Eosinophilic Gastroenteritis with a GJ tube for enteral feedings, High Functioning Autism, and most recently Mitochondrial Disease (Complex II and IV). Despite everything he has been through, Thomas remains a chipper, smart and cute little kiddo with an infectious smile.