Why Won't She Eat?

This is a common question I get regarding my daughter Catherine. Trust me, Robby and I have had this discussion a zillion times. A social worker which was assigned to us while we were in the day treatment program at the Marcus Institute told us "WHY is for philosophers. We just try to focus on fixing the problem here, but finding the cause of the problem." (Of course Marcus did not really fix the problem, but that is another post.)

Robby and I are more analytical than that social worker, so we have thrown around several possible reasons that she won't eat:

- She was on an IV for the first 9 days of her life and not allowed to eat, so maybe she just didn't make the hunger - eat connection
- She threw up five or six times a day every day for the first 3 years of her life, so she may have developed an aversion to eating
- She may have a hyper-gag reflex, which makes it harder to swallow and causes more vomiting
- Her brain tumor is located above her hypothalamus (which controls growth and hunger) and may have affected her hunger drive
- She may have no hunger drive at all
- She can control very little in her life, but refusing to eat is something she can control
- She is lazy and would prefer to read or do a puzzle while being plugged into a feeding pump (it is completely effortless eating on her part)
- She has become tube dependent and thinks it is totally normal to eat through a G-button

Thus, we have no idea WHY Catherine won't eat. But, the social worker is right. It doesn't matter WHY she won't eat. What matters is the solution. Initially we had to tube feed her. The only other option would have been to let her starve herself. She had so many medical challenges going on that she needed all the nutritional support she could get.

When she was 24-26 months, we spend 2 months in the day treatment program for Pediatric Feeding Disorders at the Marcus Institute. A team of experts worked with Catherine for 8 hours a day for 8 weeks. They could not break her stubborn refusal to eat. At times I was almost proud of the avoidance techniques she developed to refuse to eat. She would spend 45 minutes in a feeding session with her lips clamped shut, rather than accept a spoonful of food in her mouth. She would fake falling asleep so they would stop a session. The time we spent at Marcus, with our daughter failing the program, was one of the hardest things we have ever done as parents. There are only a handful of these specialized intensive feeding programs in the country. Our insurance company was paying $1300 a day for this treatment. We were there every single day, all day. And she was winning.

But, in retrospect, I guess it was best that she won and we continued to keep her tube fed. Just one month after she "graduated" from Marcus (i.e. the insurance money ran out), she was diagnosed with brain cancer. At the time she was only 23 pounds and 27 months old. The oncologist told us that almost all kids that size and age with cancer need feeding tubes, to provide them with the maximum amount of nutritional support possible.

Sometimes Catherine would sleep for a day or two after she received chemo. Because she had her G-button, we could simply pump food into her while she slept. We can also give her medicine through the G-button and be certain of exactly how many cc's she is getting. At times when she was very weak and the chemo had caused so much nausea she could not keep formula down, we could pump juice into her through the G-button and keep her hydration and electrolytes stable.

So, the G-button turned out to be a blessing during her time on chemo. I am glad now that we did not wean her off the G-button to turn around just a month later and start using it again.

We do have Catherine sit at the table with us at every meal. We give her a plate and utensils. She serves herself all of the foods we are eating. Catherine does put food in her mouth, but usually she refuses to swallow it. She has had several swallow studies done and all have revealed that she has no problems swallowing. Yet, she will not swallow. She now gets a napkin and spits the food out into a napkin.

During the past few weeks she has begun asking for Slim Jims to chew on. She asks for applesauce and will eat 2-3 small (baby-sized) spoonfuls. Tonight she ate one slice of a banana (she broke it into about 5 smaller pieces before eating it). We are thrilled that she will eat these minuscule bites, which is more than she used to do.

I know someday Catherine will eat. I think we may have to leverage hunger to make her eat. The feeding experts do not believe in using hunger as a motivator. But so far nothing else has worked. We still pump 1100 calories a day into her. Right now we are not willing to reduce her tube feedings until she is stronger and bigger.

Maybe some day when she is older she will tell us WHY she would not eat despite all of our efforts to make her eat. Maybe she'll answer "I dunno know," like all the teenagers do when asked an uncomfortable question. Does the WHY matter? I used to think so and spent hours and hours of my time researching, talking with experts, debating with my husband, etc. All those hours were in vain; I still have no idea WHY Catherine will not eat.

Philosophers can ask WHY. Parents have to deal with the situation and find a solution.