Old School Background

Monday, February 6, 2012

2nd Annual Feeding Tube Awareness Week - Why Naomi Has a Feeding Tube

I touched on this yesterday, but here it is a little more in depth.  First and foremost, we don't know exactly why Naomi doesn't eat.  There is not one overarching diagnosis that can explain it.  We have learned through meeting other families with similar children and many therapists who work with kids who struggle to eat that feeding problems in children are usually quite complex.  Here is what we do know about Naomi.  She had GERD (gastro-oesophogeal reflux disease) which adults know as heartburn, she had a moderate to severe case that got worse with age rather than better.  Her last ph probe though shows that was completely resolved.  She was anemic, anemia alone can lead to anorexia (lack of appetite).  She has Reactive Airway Disease, which is a sneaky way of saying she has asthma without calling it asthma.  When you struggle to breathe you need more calories and in young children it is often difficult to coordinate breathing and swallowing.  She had obstructive sleep apnea caused by large tonsils and adenoids, that also obstructed her ability to breathe through her nose and made swallowing more difficult.  Her tonsils and adenoids came out in April on 2010.  Her mouth muscles are weaker than a typical child her age.  She has had periods of time where her motility slows way down and her stomach and intestines "stall" and food just sits there, then she has had times when her stomach speeds way up and "dumps" its entire contents into her intestines, dumping syndrome.  Her intestines rebel and much vomiting ensues. 

None of these issues alone explains Naomi not eating and growing well but together they start to paint a picture.  A picture that says eating is painful, eating is uncomfortable, eating is scary, eating is exhausting. While still very young Naomi learned that for her all these things were true.  Most children learn that eating feels good, eating is fun, eating is exciting, eating gives me energy.  Eating is not instinctual (sucking is, but not eating).  Most kids learn that eating is good because as a newborn they cry because they are hungry (don't feel good), something is stuck in their mouth, they suck, they get food and their hunger is satisfied.  They feel much better, eating is good.  However when they feel worse after eating or something scary happens while they eat (choking and gagging, struggling to breathe) they learn that eating is bad.  So in a nutshell Naomi learned that eating is bad and now we struggle with teaching her that eating can be good.
Participating in Birthday's with cousins and her favorite princess on the cake helps teach that eating is good.

1 comment:

  1. She is so precious. I'm glad she is doing well and gaining weight with her feeding tube.

    (I'm from the Coastie board)