Our journey with a pediatric feeding disorder has been shared on this blog throughout the past year. We have been dealing with a child with Oral motor processing delays which experts refer to as Oral Apraxia. My son also has Sensory Processing Disorder. This is a disorder in which the body has trouble processing the sensory stimuli around it. My son’s sensory system is effected in many areas, but in terms of feeding he is orally averse. He wants nothing to do with things in his mouth, around his mouth, and he has trouble with textures of food once in his mouth. It’s been a long road of appointments, experts and therapists sharing their insight on his difficulties. Over the years his diagnosis has lead to additional diagnosis of low tone in his mouth, oral dysphagia (an inability to effectively swallow), and immature chewing.
As we have progressed in this journey, our son has faced delays in nearly every single area of development. He walked sat late, crawled late, walked late, talked late, etc. As peers around him continued to progress, my son’s development was severely stalled in every facet. We sought out therapy to help with gross motor, fine motor, speech, feeding and sensory integration. The past few years have been busy to say the least. I was bound and determined to stay away from a feeding tube. My son had a NG tube, which is a feeding tube that runs down the nose to the stomach, as an infant and I was hell bent on not returning to that place. We worked hard every day, and over time it became exhausting. Each day we sat down at the table for an hour and half at each meal. We counted every calorie, we tried to get him to chew, try different foods, feel safe, and try to get him to grow.
Friends and family made suggestions on how to help him. Many felt he was just a picky eater and that we needed to give him more freedom with eating. They told us not to hand feed him – to let him play with food. If they only knew that had we gone that route, he would have eaten nothing. Pediatric Feeding disorders are not about a child being a picky eater. It is about a child not having the skills either neurologically, muscularly, or sensory in order to eat enough food to grow. People deal with this in silence every single year. Families avoid outings and parties because food is almost always the center of every event in our culture. Many of us become isolated in frustration and scream to find a way to help our child and we are labeled as parents that are enabling our children by feeding them. It’s a misunderstood disorder and perhaps has been the single most isolating part of parenting for me.
Finally after over 3 years of battling a child that simply could not eat, I came to a breaking point when he was diagnosed with a serious heart condition. His cardiologist in no certain terms said growth was necessary for children with heart conditions. Food is a necessity for a heart to grow and function. My son was grossly malnourished at this point. He had fallen from the 54% in weight to 18% in 4 months. He had no energy to eat anything, no energy to play, and was falling further behind in every area of development. After several appointments with his cardiologist and continued weight loss, we finally talked about a feeding tube. His cardiologist was fully supportive of allowing him time to grow and his heart to grow before having open heart surgery. If he continued to lose weight, he would have to operate. The choice was made at that point. We could either attempt a minor abdominal surgery to help him eat, or we do an evasive and potentially life threatening surgery on the the heart. The choice was really easy at that point.
By the time we saw the Gastroenterologist for the first time, she could not believe we had waited so long for a feeding tube. She ordered surgery to happen as soon as possible. When she ordered it that quickly, I knew it was the right choice. In June 2016, a tube was placed in to his stomach and we began our life as a Tubie family. When we got the tube, we hoped for growth and weight gain. That was about the extent of what we wanted. We had NO IDEA what would come from this decision.
After he recovered, we noticed almost immediately his energy level had increased immensely. He was interested in everything around him, wanted to read books, play with blocks, and was interested in learning to socialize with children. In therapy his speech therapist noticed that his vocabulary was exploding. He went from being barely intelligible in speech in June to having thousands of words with proper sentence structure by December. He graduated from Speech Therapy last week! He also became more engaged and motivated in physical therapy, occupational therapy and sensory integration therapy. His therapists all noted he was agreeable and eager to try everything. While his progress has been slower in these areas – he is trying things he never would have had energy for before. In fact he just started learning how to ride a tricycle. He started preschool, and has started to learn how to play independently. Before his tube he needed so much attention from us because he couldn’t do much on his own. Now he plays independently at home with block, creates imaginary scenarios with his toys, and has learned all his colors, numbers and letters.
I’m certain this sounds too good to be true. I promise you all of this has happened in less than a year. My child went from being classified as cognitively delayed to having doctors and therapist say his cognitive and speech level is 2 years ahead of his age. Our family has also been able to do things we never did before. We finally took a trip to Florida to go to Disney. We were able to go to the State Fair, the zoo, county fairs, barbecues, and family events without fear of how or when he was going to eat.
While his feeding is different than ours, I have accepted that he simply cannot eat. I realized that what I was doing with feeding was like asking a person who is blind to be able to see. If there is a disability or disorder that is physically impeding the ability, no amout of forcing it will work. So instead of forcing him to do something he can’t – we met him in a place where he could be nourished. I only wish my stubbornness would not have gotten in the way. It’s hard to know how much malnourishment has impacted his brain at this point and if any of it will be lasting. We do know that every day he is fed, he is learning and thriving. We know that this will be a long journey as we now enter the next phase of more feeding therapy, but this is now a place where it’s ok if we never get to ever eating independently. We now understand his limitations, and no matter what happens the fact that he is fed is the better than being malnourished.
If there is anything lasting I can share – if you are in this place – if this sounds like what you are facing as a parent, please do not be afraid of a G-tube or a feeding tube. It has truly saved my sons life and his development. Don’t be afraid to take the necessary steps to help your child thrive.