This Feb. 6-10 is Feeding Tube Awareness Week and we wanted to share with you how much having a feeding tube has positively impacted our son’s life.
The decision for our son to have a feeding tube has been one of the hardest decisions we had to make for any one of our children. I want you to know, our choice to proceed was the best choice we made for the health of our fourth son who was born with a rare condition called Food Protein Induced Enterocolitis Syndrome (pronounced “F-PIES” for short).
Having FPIES means that he has a delayed serious food allergies. There are no tests for this type of food allergy and the only cure is to avoid foods that trigger this delayed allergic response. Some babies/children are allergic to 1 or 2 foods, while others (like our son) can be allergic to multiple foods which can further limit the diversity of the diet. Making things more complex, foods like soy and corn; which our son is allergic to, are in/on so many foods (waxes on fruit, can lining, plastic materials, etc) which makes his variety of safe foods became even further limited.
FPIES is a rare and often misunderstood diagnosis and, seven years ago, when our son was first diagnosed, much less was known as we searched for best options to fit his needs – to provide the him nutrition to thrive and grow, nutrition that he wasn’t allergic to. It was a constant balancing act that we were struggled with everyday.
Before he turned 3yrs, a feeding tube was discussed by his medical team for months as a means to help him thrive, and despite not having a safe formula to put in the tube, it was hoped that being able to consistently give him his safe foods would help his body absorb more nutrients and stop the viscous cycle he seemed to be trapped in. The cycle of: not enough nutrition, trialing a food in hopes of finding nutrition, inflammation causing colitis, pain from the reaction; and malabsoprtion leading to anemia, low blood sugar, vitamin deficiencies, weight loss. Trapped in the cycle was not enough nutrition to make up for the malabsorption resulting in weight loss and further anemia, vitamin deficiency, and other unknown internal disruptions to his body. And repeat with each food trial, each failed food, each accidental exposure or ingestion. A feeding tube should have been an easy decision. But, would it really help him? Neither his doctors nor we knew if it would help his FPIES but they assured us they were confident it would help him, somehow. The final decision was left to us.
No one would tell us this was the right decision. We knew the odds were that it would help him; but having a tube doesn’t make allergies go away or less allergic to your allergens; so how could it help him? We were going through so many emotions….
It wasn’t just worrying about food trials, his nutrition was compromised because of his viscous cycle with this diagnosis; he had been on TPN (a super tubie!). After 8 mo. on TPN and before committing him to a port for continued and long-term TPN, his team wanted to trial one more formula through an NG Tube. We always remain hopeful that his body will accept the nutrition it needs but after 6 weeks on this formula (4 weeks via an NG Tube and 2 weeks via the G-tube) it was clear his body was not accepting it (by his outward demeanor and sensory flares and then confirmed by inflammatory markers in his blood and stool). By this time, we had already committed to the new G-tube and moved away from TPN. What would we do now? Had we made the wrong decision?
We decided to move forward with a blended diet of his safe foods, with the hopes that his nourished body would begin to heal itself and, with nourishment we could slow down his trials to the pace his body needed for recovery between trials and we could, slowly, add more foods as we expected to do when he was first diagnosed. He fell into a viscous cycle and now his tube would break him out of this!
It has been a slow process but we have been able to add a few new foods a year, filling in his nutrition. And, along the way, he thrived. Having a G-tube with safe nutrition allowed us to finally not have to worry as much about his daily caloric intakes, how we would coax him to eat enough, doing ‘dream feeds’, staying home to prepare his foods safely and fresh. And it allowed us so much more. For the first time in years, we were able to keep his blood sugars stable, he started to sleep through the night – not waking up hungry, and he gained weight and stabilized his hemoglobin, no longer severely anemic. We relaxed around meal times, allowing him to eat his safe foods for pleasure. We relaxed our schedule at home, not having to plan the day around when, where and how he would consume his few safe foods. This allowed us to do more things outside of the home and expose him to more of life and less of hospitals. He has truly thrived. We are truly grateful for this hardest decision.
Awareness Critters is very grateful to Joy Meyer for sharing her family's journey with us.