22 June 2011

Hunger Pains?

Bennett had a great eating day today!  He drank two full ounces of milk in one setting tonight.  And, he ate two whole fig newtons when given it as a "trial" food during his Speech Therapy session.   It is clear this feeding therapy and feeding protocol is working. It might be that he's actually getting hungry!

His discharge weight was 25 pounds 6 ½ oz, so with today’s weight of 25 lbs, 10 oz, that is a gain of 13 gm/day over the past 7 days.  The Dietitian thinks we may cut his tube feed down again depending on what his calorie count looks like in the next few days.

The mother of a formerly tube fed child, Olga, commented on the blog a few days ago with a great question.  And, to my delight, she posted her son's story tonight.  I wanted to reply to the question Olga asked because I imagine alot of people will ask us this question in the future.

Olga originally asked, "I'm wondering whether your protocol includes any calorie reduction so that there is an *internal* motivation to eat? (in other words, so that your bub is allowed to be naturally hungry, like we are before a meal, and then eat in response)?  (Read Olga's story here:

The answer is ultimately, yes.  Almost as soon as we were admitted into the hospital, the staff began trying to figure out how they could create a natural hunger sensation within Bennett.

We started first by moving all of his feeds to nighttime except for one during his nap.  This way, he would be more likely to be hungry during the day.  This may or may not have worked, I'm not sure.  I never really saw signs of hunger.  But it didn't really matter.  Bennett ate anyway.  Whether it was the toys or hunger, Bennett did eat eventually.

Within a few days he was eating about 300 calories per day.  So, as soon as he was eating about 20% of his daily caloric needs, his nap feed (and only day feed) was taken away. 

Bennett continued to do well.  He was never forced to eat.  But he was given every opportunity to be motivated to eat.  Within a week, he was eating enough that his nightly tube feed was cut back by several ounces.   We returned home him taking 720ml at night and 0ml during the day rather than the 585ml at night and 585ml during the day.

While we have had the opportunity at home, we have resisted the temptation to up his g-tube feed at times when it has been difficult to give Bennett a meal properly.  Only once this week have we increased his tube feeds any amount and that was only after two meals had to be missed due to unforeseen circumstances.  The situation is that we need to keep from giving him any more formula through the tube than is necessary.  Whatever we give him through the tube (or as snack no matter how much), can had a huge impact on any hunger sensation he has.

Just today, I took Bennett down to the Peds office to be weighed.  Turns out he has gained 5 ounces in a week, more than enough.  If everything from his calories look good, our Dietitian is going to recommend we cut back his tube feed even more.

The goal is to give him enough food so that he doesn't lose weight, but not more than he needs to stay hungry.

Having said that, I have been very concerned about having a child who is not hungry...ever.  I remember as an infant, he would cry.  I would always think that he was hungry.  Every time, I would find that he would not drink much, if any at all.  And his crying was almost never ever because he was hungry.  It was always something else.

It really hit me one day when I was out shopping all day with family and accidentally skipped one of his bottle feeds.  He didn't make a peep.  He didn't even seem to notice.  I remember feeling concerned.  How does a tiny baby not want to eat??  Is he not hungry?  This happened several times, which was alarming.  Why does my baby not want to eat? 

From what I understand kids with Cystic Fibrosis often do not feel very hungry.  Doctors think it has to do with the mucus in their bodies.  But Laura, one of the directors of the Baylor Feeding Clinic said that CF is not the only cause for many kids who do not eat not to be hungry.  She said, "it is the hallmark of our kids here not to be hungry.  They just don't seem hungry for whatever reason.  We don't know why.  But we work with that."

I have many times tried to create in Bennett a hunger.  Several months ago, in my desperation not to be admitted into the hospital for four weeks for feeding, I worked with a dietitian to see if we could create hunger in Bennett well enough that he would eat properly.  We cut back one of his feeds very several weeks to see what would happen.  We added Periactin to see if that would help. 

For a short while Bennett seemed to pick up in his eating, some.  But very quickly it was obvious that he wasn't hungry enough to eat enough to sustain him.  Shortly before our admittance, I put him back on his full feeds.  The reality is Bennett will eat, but he just doesn't eat enough to stay alive.

I learned alot about eating issues when I was in the hospital in Dallas.  I learned that some kids don't eat because of poor experiences they have had with eating (such as choking or throwing up).  Some kids don't eat because of poor skills (such as not knowing how to properly chew or swallow).  Some kids don't eat because of texture issues (not liking the feeling of something squishy in their mouth). 

It is so strange for a child not to eat.  Many people have asked us, "have you given him a cookie?!?"  One sweet woman asked to hold my 10 month old baby during lunch so she could "try" to feed him.  I guess she was convinced that I wasn't doing it right, as though she had the magic touch.  It's counter intuitive to think that Bennett would not be hungry and would not find pleasure in food.

But, whether it be a oral motor skill issue, a texture issue, an past experience issue in addition to not being hungry, Bennett will not eat enough to keep his body healthy.  So, we are having to help him work through these issues through a behavior modification program.

It seems lure him to eat through toys.  Obnoxious toys.  Obnoxious TV.  Doesn't this take away from the shear pleasure of eating??

It all seem counter intuitive.  But it's not.

The reality is eating has not been pleasant for Bennett.  He struggled with severe reflux for a long time.  He does not seem to have a natural hunger cycle that keeps him hungry enough to complete a meal.  And his eating skills have been lacking so much so that he often has tired of eating before is necessary.

This protocol creates in him a pleasantry that was not there before.  Now, he looks forward to eating.  He gets to play and sing while eating.  Now, he has success with eating.  He eats foods he likes and can eat a good amount of.  And now he is getting hungry.

He eats at the same time every day.  He is encouraged to eat the same amount everyday, if not more.  His tummy is stretching.  His brain is being trained.  He is learning how to be to eat...and how to enjoy food.

Eventually, he will do this one his own.  That is the goal.  The nice thing is I saw some element of that today during Speech Therapy. 

The Speech Therapist and I gave him two fig newtons just to nibble on.  He hadn't had his morning feeding yet so there was a slight chance he could be hungry.  We "trial" all foods with the Speech Therapist before presenting it in a meal just to confirm he has the skills to eat the food during the feeding protocol.  That child ate two fig newtons...a HUGE deal for a child who, when left to himself, would eat less than one.

I am convinced that this works, at least for Bennett.  This system is not for everyone.  It is neither needed for everyone nor helpful for everyone.  But it works for Bennett.

If I could have had that child eat another way, I would have.  But since nothing I offered him seemed to work, I pulled in the big guns.  That seems to be working.  However, only time will tell!

:::P.S. Olga, that is a wonderful story about your son!  I think you did that beautifully!  I only wish my efforts to do that went as well!  It seemed Bennett just could not "latch on" naturally with a hunger drive.  But some elements of what you did is what has been helpful with Bennett.  I've never forced him (although I do motivate) to eat.  I think food should always be pleasant.  Thank you for sharing your experience and asking your question!  I'd love to know about other feeding programs out there, including the one you work at!:::


  1. Yeah, Bennett!! Good job, buddy! Your friend Molly wasn't interested in fig newtons, so I'm really proud of you!

  2. We had to use a lot of videos, toys, etc to lure MAdeline to eat and it has paid off in the last year. She never use to act hungry until recently. When you get to a "place" where you feel you can relax about getting the right amount of calories into Bennett...then I swear these CF kids act hungry. Madeline has FINALLY gotten to this place but that is only after being in the 75th percentile and higher for over a year...has she decided to run to her chair and let me know she is hungry. She has done this numerous times in the past few weeks. I have been waiting for this ..and I am sure it won't last long but it will happen with Bennett. I think once our kids know that they have more control over their meals, they tend to take over. Once Bennett gets more comfortable and eating this way is just a part of his routine..i bet you see she those eyes just asking for food. So happy for all of you and especially Bennet! He is doing so well!

  3. Since you asked, I’ll share our daughter’s weaning journey with you. I always liked reading what other families went through as far as weaning. I learned something from each one

    Catherine is 3, but due to a chromosomal abnormality, she is around 12-15 months developmentally. She was tube fed for her entire life due to reflux. Like Bennett, she never seemed to be hungry when she missed a feed here or there. She was always full though. I realized after a time that the desire to eat that she had been born with had been suppressed and she wouldn’t know what hunger was if she felt it. She wouldn’t know the cure. And it didn’t matter if I gave her all her calories at night or boluses during the day, she wasn’t hungry. We spent some time in feeding therapy, but the therapists all wanted to work on her oral skills because when she would allow food inside her mouth it would just sit there. So they tried to get her chewing, but to no avail. After doing some research I realized that perhaps all Catherine needed to feel was hungry. She had demonstrated in the past that she could eat a few bites here and there, and there was now no medical reason for her not to be able to eat by mouth. I tried in Jan. to reduce calories myself, but I didn’t give her enough time and went back to full tube feeds.

    In May we went to Seattle Children’s Hospital where we worked with an OT for 2 weeks. It was an intensive calorie reduction program. Her calories were reduced 15%each day for 4 days and on the 5th day we dropped 80% and stayed there for a few days. All the calories we dropped were replaced with fluids so she never got dehydrated or constipated. She got tired and fussy, but it was manageable. After a few days we ended up giving her 1 ounce of her blended diet twice a day to give her a little bit more energy. I was surprised how long it took for her to associate feeling hungry and eating. At the beginning of the second week it clicked and she pigged out on popcorn! We basically let her eat whatever she wanted whenever she wanted to. It was a learning process for her so we gave her that time to figure it out without any pressure whatsoever. She lost about a pound and a half while we were there and it was completely acceptable. Since we’ve been home she’s gained a little, but is eating everything! She’s maintaining her weight and her doctor is happy with how everything is going. It’s been 6 weeks since we’ve been home and for the past week and a half she hasn’t gotten any calories via tube…she’s doing it on her own! Amazing.

  4. Part 2....During the wean she would snack throughout the day, but it didn’t take long for the volume to increase and she started to develop on her own a hunger and eating cycle that fit with what we were already doing with her brothers, 3 meals, 2 snacks. I write down once a week what she eats for a day and send it to the therapist in Seattle and so far she is pleased with her progress. I just watch her weight. If she starts losing weight, I would think about adding that tube feed back, but as long as she maintains her weight we’ll give her the time to continue to explore foods and hopefully we’ll see some weight gain in the near future. What’s more important to me is that she is happy, has energy, and is developing (at her own pace). And as far as those oral motor only took her a few days to learn how to chew and move food around to form a bolus. She got those skills through the experience of eating. Now she loves to eat and eats whatever we eat. She actually eats better than some of her brothers! I am so thankful to Karen, the OT we worked with, for helping me to be more confident in my ability to read Catherine’s cues and to relax and enjoy her new skills. Because it’s hard as a mom of a child with special needs to let go of that control we have and let our child take over.

    There is certainly no one way to wean because every child is different. I am glad that Bennett is getting excited about food and eating more (two fig newtons is huge!!). It’s definitely a stressful time, but very much worth it. Watching your child begin to eat is a wonderful thing to witness! Good luck to you!

  5. thanks again for the kind words about my post. :-)
    i don't officially work with any feeding program. i guess you could say i'm an advocate. (basically, i arranged a meeting with the president of Seattle Children's, told him the system was failing kids on tubes, presented opportunities for the hospital to become a national leader on tube management and weaning, and asked that the hospital please fund the project that was already waiting in the wings. and he did! and parents are involved with staff in making sure each tube-fed child will reach their eating potential, and that for those cases where it is medically viable, a weaning plan will be discussed *at the time the tube is placed*; right now too many kids fall through the cracks.)
    i'll be meeting with karen quinn-shea (who nicole worked with) next week, to talk about what other places in the US offer feeding programs that incorporate appetite stimulation via calorie reduction, using a so-called "child-centered" approach. i'll let you know what i learn! as nicole described above, a child-centered wean involves letting the child choose and guide the process, in a supportive space.
    the only other places i have heard of that are not strictly behavioral (like baylor, kennedy krieger, etc.) are Polly Tarbell at Kluge, and Spectrum Pediatrics in Virginia, where they are collaborating with an amazing guy from germany (markus wilken, ph.d.) who did a few home-based weans in Seattle.
    from what i know, CF is tricky in that those kiddos need many more calories than other kids of the same age/size. i don't know whether that means those kids needs to stretch their tummies more, like Bennett, so that they can take all the food that they need (in other words, they need to learn to "overeat" so that they stay healthy), or whether success is a partial wean, with additional calories supplemented via tube. ?
    in any case, beyond thrilled about those fig newtons. i remember that joy of a new food! and you know, i still can't get over it when i see a baby eating (wow! look at that kid go! amazing). i forgot that's what babies do, even though zander was my second.
    best, olga


We love to hear from you! Please leave your comment below!

Note: Only a member of this blog may post a comment.