23 July 2010

Feeding Clinic Evaluation

We are pretty stoked about an upcoming Feeding Clinic evaluation Bennett will have done in September.

Bennett has continued to struggle to eat.  He eats only about a tablespoon of food 3 or 4 times a day, not much for a guy who should be eating jars of baby food per day.

After several discussions with other CF moms we know from all over the country via Facebook and, we have decided to go forward with several suggestions to utilize a special feeding program run by many children's hospitals.

We did our research and have finally decided to go forward with the Baylor Feeding Program in Dallas.  This program seems to be very well designed.  Our favorite element about the program is its behavioral component.  In addition to having a speech therapist and occupational therapist involved (which most programs do), this program uses a psychologist to guide the child's therapy.  We feel this is really important because eating is not just about physically putting things in one's mouth and swallowing, but also choosing to do so.

These days, Bennett will tolerate very little to eat.  He chooses to eat only applesauce and pears.  Anything else is met with a clenched jaw and some fast moving hands.  He also likes to sling his head side to side until we give up in frustration.  He is beginning to show us that he is choosing not to eat.

However, Bennett doesn't have the luxury of choosing to eat.  He must take his enzymes by mouth before EVERY feed.  So, this past week (before we knew that he would only eat apples and pears), we were forced to hold him down and open his mouth to get him to eat his enzymes.  It was a horrible situation for everyone involved.  So, we've resigned to feeding him whatever he will choose to eat.  We don't want him to be so limited in his food choices but it is not worth making it a traumatic experience for him. Ultimately, we don't want him to hate eating all together.

Also, until last night, we were having to wake him up in the middle of his sleep to feed him his enzymes since he uses a nighttime feeding pump.  Fortunately, after a call to the CF clinic, we were able to find a way to give Bennett his enzymes without having to wake our sweet baby (who, by the way, does not take too kindly to being awoken from his warm sleep to have a spoon of food with enzymes shoved down his throat).

We aren't really sure why Bennett isn't eating but we have a few hunches.  One possible reason is that many kids with CF do not have very big appetites, despite that in order to stay healthy, they often require double the number of calories for a child their age.

Another possible reason is that Bennett experiences alot of reflux, choking, gagging, vomiting and abdominal cramping when/after he eats.  Who would want to eat if they experienced such things after doing so?

A last possible reason is that Bennett had a breathing tube and feeding tube for several weeks after birth.  So, he likely started out with oral aversion pretty early in his life.

Another reason some CF children don't eat (a reason that probably doesn't yet affect Bennett) is because it's the one thing they control.  They can't control their medications, treatments, limitations.  But they can control what they eat.  So some choose not to do so.

We have had a wonderful speech therapist work with us in the past (she just moved) and we plan to continue to work with private speech therapists again in the future.  However, after speaking with other CF parents in our situation, we have come to realize that weaning a child off a feeding tube is a difficult and daunting experience - one that likely needs a specialized team to do so. 

So, we are looking forward to what the experts at the Baylor Feeding Clinic suggest that we do when we meet with them in several months!


  1. I'll add a question: What does it do to ones mind to be fed apple sauce before every single feed?
    You can by the way also use carrot baby food from a jar to give the enzymes or any other fruit or vegetable without fat and proteins in it. We started out letting her try anything we ate to get her used to different tastes. Sara is still not eating big enough meals, but now she accepts more variation of foods. She prefers salty food so we add her salt to her porridge and dinner with oil or butter too. Sara hates her vitamins so I add them to her fruit puree.

  2. I'm excited that he is getting his feeding evaluation. I'm sure the team approach will help you tremendously!! I love how much Bennett is growing and changing. He is such a sweet boy and very lucky to have you as parents!!! I soo wish I could have done more for you but will keep up with your progress on here. Take care! Mary


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