13 April 2011

CF Patient Education Day: Learning more about CF Eating Issues

Brian and I had a really great time at our first CF Patient Education Day at Children's Hospital in Dallas.  CF Doctors, nurses, respiratory therapists, child life therapists and psychologists were there to answer parents' questions and teach more about the disease.

Of all of the sessions, it was the Feeding/GI Issue Session that I found most helpful for Bennett.  Here are just a few of the things I learned (the bolded part shows what I didn't really know before attending this event):

* CFers need to eat a high-fat, high-caloric, salty diet.  And for whatever reason, this does not affect their cholesterol. 
* Enzymes should be taken before all meals (rather than during).
* Enzymes should be taken with all food and milk (except for sodas, fruits and fruit juices)
* Enzymes are given to help CFers digest fat, protein and carbohydrates.
* Wasted calories won't help the CFer grow.  Therefore, it's important to give enzymes with every snack and meal.
* During the hot summer months, CFers should be eating lots of salty things (to replenish salt back in their body).  Offer Gatorade or water with a pretzel, for example.
* For young children with CF, the goal of eating should be less about gaining weight and more about gaining an interest in food.  While our goal should be to maintain nutrition, it is particularly important to protect a good relationship with food.  This time in their lives, young children are developing a psychological relationship with food.  Therefore, parents should set reasonable and positive expectations for meals (such as "we eat at the table" or "we use our fork when we eat").
* Children with CF often feel towards food like moms in their first trimester of pregnancy feel towards food.  For whatever reason (likely the thick mucus in their tummies), CFers do not get as hungry as the average person.  Therefore, the goal of raising a child with CF is teaching the child that sometimes we have to eat, even when we don't want to.

After this session, I pulled the Children's Medical Center of Dallas' child psychologist aside (since she had been doing the presentation) and asked how her presentation affected Bennett in light of our upcoming Feeding Clinic appointment.  I asked her if she believed that the Baylor Feeding Clinic was actually the best thing for Bennett.  I had maybe hoped that she would say, "nah, he'll figure out eating on his own, don't worry about the feeding clinic."  But she didn't.

In fact, she said the opposite.  She said an "inpatient feeding clinic is standard in a situation like Bennett's" (Bennett's situation is a bit unique since he's had a g-tube from birth).  The child psychologist, Jamie, was just *amazing*!  She basically told me that it was normal to worry about bringing him to the clinic.  She warned me that it would be hard but reassured me it would be worth it.  She explained that the clinic is going to work with Bennett on the basics of eating.  They will investigate his chewing skills, swallowing skills and overall ability to eat well.  They will work with him to eat, not only when he's hungry, but when he is not hungry too.

I have had such anxiety about this upcoming admission.  I have felt so conflicted because I have wondered if Bennett really needed the inpatient care.  I have wondered if he qualifies as a typical feeding clinic patient.  I've thought to myself, "maybe CFers are different?  Maybe Bennett shouldn't be pushed - if he's not hungry, is it right to make him eat??"  I have worried because I know a little bit about the behavior model of the clinic, which can be brutal for any mom of a young child.

But, after speaking the the child psychologist, I realized this is exactly where he needs to be and this will definitely be beneficial.  Even if Bennett doesn't leave the clinic g-tube free, there is much to be gained from our experience there.  So, I am back towards the top of the feeding clinic emotional roller coaster - excited and happy for our upcoming time there.  Let's just hope I can hold on to this new confidence for another few weeks.

We learn of our admission date within a week or two of going.  As of now, we're still looking towards sometime in May but not sure beyond that.


  1. Jamie totally rocks. I can give you her email or phone number if you like. Even though your going to a different clinic ... I think that's allowed, right?

    I hope all goes well in the feeding clinic. I know you want badly for him to be free of the G-tube. Coming from my point of view, I would be scared to get rid of it, unless I knew for sure that he would not gain any added benefit from night feeds or additional supplements through it. But that's just me. It was a huge deal for us to go through that decision of surgery, and I had many battles within myself and with family as to what was the right decision, whether to get the tube or not. Azer told me once, "If I ever eat enough to not lose weight, I still want to keep my Mickey button, because I don't want to do THAT again." Lol. Don't really blame him.

  2. I'm really glad you are gaining some peace about the Feeding Clinic. I know that all you ever want is to do what's best for your little man, and making those tough decisions can be such heartache for you. But you are doing an amazing job of caring for him, through learning about his disease and taking advantage of the resources you have available to help him. I really hope and pray that this clinic is able to aid Bennett in those "basics of eating." Love to you!!

  3. Thanks for info. I've never heard of a feeding clinic. However, it does makes sense for those that have been tube fed for so long I know it is a challenge to get them eating. It will probably have it's stresses but will be so worth it in the long run!


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