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Our Journey with a Pediatric Feeding Disorder!

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You know all the ideas you have in your mind about what your child will be like before they’re born? Some of the things I said before I had kids was that my kids would sleep in their own beds all night, they would eat what I would make, and they would be on par with development all of the time. Well, then you have a kid and your whole life changes and some of these ideas that you had in your mind are just not so accurate anymore. This is our story and the journey that we are on as well as the next step for our little family.

What is a Pediatric Feeding Disorder?

Pediatric feeding disorders are a real thing, and many people don’t know what it means when I say that my child has one. It is  more than just picky eating and it is something that requires numerous hours of therapy, patience and techniques to overcome and make progress in. It isn’t from a lack of parenting or caused by something that we did in our son’s early years, it is just something that our son has and that we deal with on a daily basis.

Our Story

I could write a book about our journey but I’ll summarize the high points here for you. As we journey to the next step in our marathon, I want you to have a basic understanding of where we started. All I ask is that you celebrate each and every little improvement as they are huge in our minds.

Our son just turned 4 and our journey down the feeding challenges path began when he turned 6 months old and we attempted to introduce solids. He wasn’t interested so our pediatrician recommended that we wait a few more months as he was tiny due to IUGR (Intrauterine Growth Restriction). So, at 9 months we tried again, with failure once again. At 13 months we were referred to a pediatric gastroenterologist for an evaluation and at 15 months our son was under anesthesia to do an endoscopy to rule out things like eosinophilic esophagitis. Nothing was found.

At this time we started therapy with the state of MD and had occupational therapy and speech therapy. Then, we went to outpatient a few times a week at a local private therapy place. He was just avoidant, and mealtime was not pleasant. His diet consisted of PediaSmart which is a toddler formula with full nourishment. He had started on PediaSure at 13 months old per the GI’s guidance. We were constantly introducing and trying different techniques for feeding and finally, with the help of numerous therapists and a consistent therapy schedule, have him licking chips like Doritos and Cheetos and eating one flavor of puree along with the PediaSmart, out of a bottle.

What’s the Next Step?

We know that the next step in our journey is a more intense feeding program so that is what we are doing in a few weeks at Mt. Washington Pediatric Hospital in Baltimore, MD. They have a feeding day program that is M-F from 8a-4p where he will have 3 meals a day with a behavioral psychologist, oral-motor therapist, dietician, nurse practitioner, occupational therapist and more on his team. While I have heard the gist of the program, I am not sure all that we are to expect.

It will be hard, there is no doubt about that. He has something called ARFID — avoidant restrictive food intake disorder, has never chewed and is really aversive to anything other than his bottle. So, in 6 weeks some of the realistic goals that we’ve set are to get him off of the bottle and onto an open cup, expand his variety of puree flavors that he will take, work on mashed foods to teach chewing, introduce a variety of texture, and get him to chew/bite the chips that he likes to lick.

Follow Our Next Step

Follow along! I am planning to update while we are in the program at least weekly and hope that you’ll follow our journey. The first 2 weeks are going to be tough. I’m sure tears will be shed by me and our son. Garrett and I will be splitting weeks up there with him due to work but we are overall hopeful that he will make progress. I am confident that this program is happening at the right time.

I am here to help, too. I’ve learned a lot about Pediatric Feeding over the last few years of our journey and would love to share my insights. While I’m not a professional, I am a Mom who has dealt with and learned more about pediatric feeding than I ever thought possible!

Thank You For Sharing!!

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