Having a tube fed child is both a blessing and a curse for most families. On the one hand you have a child that can finally grow and get nutrition, and on the other hand, most of us are feeding our children prepackaged formula or food. The use of formula or prepackaged food is convenient for parents, but it can be challenging for families to find options that their child can tolerate. Many children with feeding tubes end up with a tube due to food intolerance and digestion issues like gastroparesis.
Intolerance to food and gastroparesis can make tube feeding challenging for many families. Formulas are premade, and many contain ingredients that are hard to digest. Even some of the most broken down formulas can be difficult for children with gastroparesis to absorb. Families often have to work with their child’s doctor to find formulas or pre-made options that can be tolerated by the child. Unfortunately, many of us end up in a situation where nothing that is premade works and our children are in daily pain, on continuous feeds, and taking numerous medications to control the discomfort, reflux, and gas.
Our journey was no different. My son’s feeding tube was placed due to dysphagia, poor weight gain, and inability to properly chew. We started him on a formula called Compleat, but the food that was contained in the formula wreaked havoc on his stomach. He needed to have the food run very slowly via a pump, and he was on continuous feeds for more than 12 hours a day. Next, we moved to Peptamen Jr, and his symptoms decreased significantly. Initially, Pepatemen Jr. worked well, and he was able to tolerate 1200 calories a day. We still had to do continuous feeds overnight, but during the day he was in a lot less pain. Unfortunately, he got to a point when he needed more calories, and that meant he needed more calories during the day. When we increased the calories, his ability to tolerate the formula decreased dramatically. We were venting his tube up to 30 times a day, and numerous times we watched his lips turn blue.
We moved him to a premade blend called Real Food Blends. Initially, the results were fantastic for him. He was able to tolerate increased volume of food, and he was able to get off continuous feeds overnight. He still had to be frequently vented, and he complained daily of stomach pain, nausea, and he would gag and retch frequently.
His doctor and I worked together to find a reason for his slow digestion, and we had a study set up to measure how quickly his stomach was emptying his food. The results of the test were not surprising to either of us, and he was given a diagnosis of Gastroparesis. His stomach was emptying much slower than average, and we knew we would have to do some tweaks to his diet.
Through some evaluation of the ingredients in Real Food Blends and the amount of fiber in the food, along with acidic ingredients, I was able to determine we needed to reduce Fiber and acid from his diet. The food we were giving contained Flaxseed, Carrots, squash, kale, pineapple juice, and orange juice. Foods that are roughage based (fiber), acidic (orange and pineapple juice) and high in fat (oils used in the purees) were difficult for my son and are typically difficult for people with gastroparesis to digest.
Gastroparesis was making my son miserable, and I knew I needed to make changes to his diet. I decided to blend food for him every meal. Blending the food gave me greater control of the ingredients, and I could take notes of blends that worked or did not work based on how he responded. Initially, I felt a little overwhelmed by controlling his diet, having to blend every meal, and counting his calories and I wasn’t sure I would have the time. I eliminated all food from his diet that was acidic, high in insoluble fiber, and foods that were high in fat. For each meal, I tried to limit the number of ingredients so I could try to identify what foods caused reactions. The results were pretty spectacular for my son.
When we removed the foods that aggravated his Gastroparesis, his need to be vented became less frequent. I knew foods he could digest easily were lactose-free milk, lean proteins, bananas, peas, spinach, strawberries, potatoes, oats, and rice. I kept the blends very simple for the first few weeks as I watched his reactions to the blends. The change in his digestion was profound. He still digested much slower, but he was able to absorb with less discomfort and gas. Venting his g-tube became easier because only air would come out instead of undigested food.
The most significant win for me in the process was he complained of fewer stomach aches. When I was giving him premade foods, he would tell me almost daily that his stomach hurt. He would press on his tummy and gag trying to relieve the discomfort. After we started doing an entirely homemade blended diet, he had fewer stomach aches, less gagging and retching, and he was able to play without losing his breath from choking on the air in his throat.
My concerns about the time it would take to blend for him were unfounded. I used ingredients we already had in the home, and I made protein ahead of time to add to each of his blends. For every meal, I tried to balance his blends with protein, milk, a vegetable or fruit, and a complex carbohydrate. I used grass-fed beef, chicken, and fresh eggs as his protein base. For complex carbs, I use potatoes, sweet potatoes, and whole wheat bread. Vegetables and fruits have been harder to find options that work. Dietary fiber of any kind is hard for my son, and I’ve had to do some testing on what vegetables are the best. He tolerates peas, strawberries, spinach, bananas, and cooked green beans.
Through blending, I have been able to control the food that goes into his tube, I can monitor what blends work or don’t work, and I can make changes to his diet if needed. Gastroparesis is challenging for anyone that has it, and for parents, it can be challenging to find foods that work best for their child. Learning about dietary restrictions and recommended foods for patients with gastroparesis is also essential when switching to a blended diet. While some children can’t have any fiber or vegetables, other children can tolerate them if they are cooked and blended. A lot of the diet preparation and blending will be trial and error as you learn what your child can easily digest.
Gastroparesis doesn’t have to control the life of your tube fed child. An adequately blended diet of foods low in fat, acid and fiber, will be easier for your child to digest. Splitting up meals and giving smaller meals more frequently can also aid in their discomfort and digestion. Also, medications can be prescribed by your child’s doctor to help the stomach muscles contract and digest food with more ease. Diet control and ingredient control is critical for children with gastroparesis, and there is no better way to control your child’s intake by blending their food. Blending can seem overwhelming, but using ingredients you keep at home and preparing protein ahead of time will reduce the time you need to blend.
Make sure to invest in a quality blender like Vitamix or Blendtec. Both companies have programs for medical discounts – you can find refurbished ones on Amazon as well. You can contact Vitamix for their medical discount options. Blendtec also offers discounts for medical purposes, and you can contact their customer service for more details.