Friday, October 25, 2013

Holt's Feeding Disorder

I finally have some answers, although very vague ones in what is going on with Holt's feeding issues. Many of you that know me and my family are aware of what a major issue this is for us. I count my blessings that this is the only "issue" we really have with him. Things were really put in perspective for me when I took him for his evaluation with the occupational therapist last week. A mother with her son in the waiting room commented on how articulate Holt was and how well he spoke for a 3 year old. She was there with her nonverbal autistic 8 year old. She has 4 sons and her husband is gone for 2-3 weeks at a time every month. When I told her we were there for a feeding issue, she told me I should just be very thankful that he is healthy. She was very nice about it, and I completely agree. However, for us this is a major issue and I truly need some help in this department with him. He is anemic due to lack of iron in his diet. My fear if this is not resolved is him passing out at the T-ball tee or soccer field as he grows up. It's not ok that you do not put healthy fuel in your body on a daily basis.

I really had to press the issue with my pediatrician. I've been telling him since he was 15 months old that I thought there was a problem. I did just chalk it up to being picky at the time, but then it got worse not better. Which is a major sign of a feeding disorder. He goes through what we call a jag, meaning he does not return to foods that he used to like. A picky eater will be tired of mac n cheese for example, but go back to it after a break. Holt has never returned to foods he stopped eating, so his list of foods has just decreased and decreased over time. He kept saying it was normal and to give him pediasure to fill in the calories. Finally at his 3 year check up I would not accept this anymore and said I needed to resolve this issue. That's when he got tested for anemia. He handled that finger prick like a champ until he couldn't take it anymore. I told him he could cry and he finally did after about a minute of her squeezing his poor little finger trying to get the blood out. From there we met with a dietician which was pointless. She said I needed the Feeding Disorder Clinic, which I already knew. Most pediatricians will say it's normal for kids to be picky and they will eat when they are hungry. This isn't acceptable to me or an OT because yes they will eat, but what will they eat? Fruit snacks? Goldfish? There is nothing good for the body in those items.

There are a variety of reasons for why he could have this feeding disorder and we may never really know the true cause of it, especially if it can't be medically diagnosed, such as reflux. This is a long process, up to 6 months, possibly more. For him it boils down to a true fear of food. It's possible something happened to him when he was little, such as choking, and we may not have even been aware of it. Something traumatic like that has completely turned him against food. He is fine with crackers and yogurt and some other weird things like edamame and pickles. They asked me in therapy what I can rely on him always eating and it's crackers and yogurt. They said he is a classic feeding disorder case. Per their directions I brought some preferred foods (pretzels, strawberries, cheese) and non preferred foods (hot dog, chicken nugget, rice and cheese). He verbally refused all the non preferred foods and barely touched the preferred. It was an easy "diagnosis" for them. They recommended him for feeding group therapy once a week.

They start with about 20 minutes in a sensory gym to "de-sensitize" and get all the "boy wiggles" out so they can better focus in the group setting. I am sitting on the other side of a one way mirror with a speech therapist learning about what needs to be done at home. We can hear them and see them, but they cannot hear and see us. This week they made Mad Scientist Wraps with tortilla, ham lunch meat, cheese, lettuce, carrots, blueberries, and pickles. Every week they will work with various foods and textures. They start by touching the food, smelling it, licking it, kissing it, biting it and spitting it out. They rarely will chew or swallow the food, it's the last step of a 20 step process. They are just getting familiar with it. He totally refused the ham at first, but did kiss it and put it in his "All Done Cup".

That brings me to the first idea we will be implementing at home, the "All Done Cup". At each meal I will give him a cup (probably one of his superhero plastic cups from HEB) and place it next to his plate. He cannot flat out refuse his food anymore. He will have to use one of his senses before putting it in the All Done Cup. This eliminates the stress for everyone because I no longer have to force him to try something or swallow it. Once I tell him what he needs to do with it and he does it, in the All Done Cup it goes and he does not have to revisit it again. She told me to stop forcing him to do anything now that he is in therapy, it's not worth the struggle and stress. Also, meal times will be 20 minutes, 30 minutes tops. No more sitting there with him for an hour because after 30 minutes nothing is going to change anyways she said. We basically need to reestablish trust in him again at meal times.

We are on the right track! I cannot express how relieved I am to know I am not alone in this matter and that I truly am not crazy. They asked me if I had any questions and I said, "So I'm not crazy? He really does have a problem?" They exclaimed, "Ohhhh yes! There is a big problem." So I encourage you Mommas to stick to your instincts and not just accept what your pedi says if you do not believe it's right. You know your kids better than anyone! If you think your child might have some issues like this, ask your doctor. They will have to write a referral if there is a feeding therapy clinic available in your area. I almost cried when we left therapy yesterday and Holt was just so excited with himself that he tried a bite of a carrot! Whatever your "issue" is with your kids, seek help so you don't have to live a stressful life and you can enjoy motherhood to its fullest!



1 comment:

  1. We are in the same boat. My oldest lives on crackers and yogurt and he is almost 5. We did a year of therapy with ECI with zero improvement and are now looking into zoloft. We are at a total loss. He does well with the all done cup but after months he still won't actually swallow anything. It is Sooooo frustrating. Hang in there!!!

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