Feeding Difficulties

ben-feeding-therapy-1

Ben has been tube fed since birth, and ever since then, we have been determined that he will one day learn to take most of his feeds by mouth.

Ben, however, has other ideas.

Our dedicated occupational therapist has been helping us to work with Ben for the last 2 1/2 years to get him to make the transition to oral feeds.  Unfortunately, we go through the following cycle over and over again:

  1. Ben does reasonably well for a few days,
  2. Ben then regresses and absolutely refuses all attempts at oral feeds,
  3. We back off for a few days to a few weeks.
  4. Repeat.

When Ben was a year old, we took him to a feeding specialist at our favorite tertiary care center.  Of course, he did really well during that session.  Our goal was to get him to eat at least 30 cc by mouth so that we could do a swallow study to make sure he wasn’t aspirating.  Unfortunately, we haven’t been able to get him to that 30 cc goal a year and a half later.

Finally, we visited the feeding specialist again 2 days before Christmas 2008, a year and a half after our initial visit.  We probably shouldn’t have waited this long.  Ben did reasonably well during that session again, the specialist was great, didn’t scold us for not bringing Ben in sooner, and he offered a lot of good, practical advice.  He instructed us to keep feeding attempts short (10 minutes) and consistent, offer very limited interaction during the feed itself, until Ben cooperates by opening his mouth for the spoon.

ben-feeding-therapy-3

At that point we are to praise him, and offer him a brief reward (e.g. getting to flip a few pages of one of the board books that he loves so much), remove the reward, and start again.

ben-feeding-therapy-2

We came home very hopeful, since Ben had done so well that day.

Unfortunately, we have hit another bump in the road; another period of regression.  Ben has started to open his mouth less and less, and he gets more and more upset with each attempt.  We have gotten to the point where he won’t even take one spoonful in the 10 minutes; he clamps his jaws shut tight, and he shakes his head from side to side.  Our feeding specialist is awesome; he is accessible by email.  I told him the problems we’ve been having, and he suggested offering Ben a single spoonful, holding out until he cooperates, however long that takes, and then rewarding him with praise and removing him from his highchair and letting him play.

Sounds good in theory, but unfortunately we are afraid that Ben can outlast us.   He is a stubborn little guy when he wants to be, and we do have three other kids to attend to.  Worst of all, since we started all this Ben hasn’t been his usual happy giggly self, and that makes me sad.

So I’m not sure what we’re going to do at this point.  I think we’ll pay another visit to the feeding clinic soon and see what strategies they suggest.  If we’re not successful in getting Ben to transition to oral feeds with a home-based program, we may need to enroll him in an intensive feeding program at the feeding clinic which itself isn’t an easy option because it is located an hour away from our home.

look-at-me-im-eating

Meanwhile, Nate has recently tasted his very first bites of baby cereal.  He made it look so effortless.  Ben was sitting just a few feet away in his highchair, and was completely unimpressed.

i-couldnt-care-less

Who knew that such a basic thing as eating could be so difficult for some kids.

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10 Responses to “Feeding Difficulties”

  1. Maureen Says:

    I’m so sorry the transition to oral feeds has been such a challenge. It sounds incredibly frustrating! Is Ben opposed to all foods? Does it make any difference at all if you try fruits vs. veggies? I’m sure you’ve tried everything.

    Keep us posted on the more intensive program. And hang in there!

  2. Rhonda Says:

    I love the pictures of Ben. He is so darn cute. I’m sorry he’s having so much trouble. We didn’t face these problems with Sean. Our problem is we can’t keep him from eating. He would eat 24/7 if we would let him. Good luck.

  3. Heidi @ GGIP Says:

    I have a feeling we will be traveling down the same road. I am just able to schedule a swallow study now to see if Blue is ALLOWED to try to eat. I really hope he is allowed so that he HOPEFULLY can experience the joy of eating or tasting or whatever can be done.

    Much luck. It will be interesting to see what you decide about the feeding program.

  4. misty Says:

    we are experiencing the VERY same thing here… we were just given the ok to go ahead with feeding again, and some weeks mason is fine with it while other weeks he refuses!! today was a good day for eating…. we also have a swallow study coming up in the next month, so that will be stressful, but informative :)!

    good luck with it all.. we know too well what you’re going through! keep us posted! the boys look great!

  5. megan Says:

    Ben is so adorable!! It must be so frustrating for you. It is so hard for us moms to sit back and wait. We want so much for our little guys!! We haven’t been orally feeding Mason yet since he is still pretty little, but we are able to give him little “tastes” here and there…so I don’t know exactly what you are going through right now, but hang in there. Our little guys are special…god has a plan…even if I don’t quite like it sometimes:)

  6. Deni Says:

    just loved this post Karen, the way you have used the photographs in telling your story, I was right there with you and feel your frustration and that pain of sorrow when it goes downhill again. As you say, it is so hard when you have to also provide your full self to three other children. Hang in there, children never cease to surprise, and Ben will probably turn around one day and just decide he will eat non stop.

  7. lisa leonard Says:

    Hi friend
    So sorry its been such a rough road. We really pushed David. But he was also pretty receptive. We would try to feed him a bit, wait an hour, try again, wait an hour, try again. We let him get hungry at times. We also tried sweet stuff like vanilla pudding.

    Our therapist was much more cautious than we were. She was worried about pushing David too hard and having him shut down. It’s a valid concern, but I still pushed him anyway.

    There is no easy answer. You’ve got to figure out what works for you guys. Sending hugs!!!

  8. Stacy Says:

    WOW! Ben is such a cutie, well all the boys are! I have a sone named Edwin (Eddie) who has CDLS. Eddie is one and about the same place Ben was at a year. It’s great to look ahead at Eddies future through Ben’s journey! Eddie is tube feed and stuggles with oral feeds and also is limited in his mobility. I look forward to more blog post to see how it goes. I must admit I read all of your posts in one evening, like a good book I wanted more of the story! All the best Stacy and Eddie

  9. amberhj Says:

    have you looked into the tube weaning clinic in austria?

  10. Deanie Says:

    I have a micro premie that is 14 months old today and I seem to be having these same problems. I am so glad it’s not just me. I honestly was beginning to think I was just a horrible Mama. Mitchell had never taken a bottle and really doesn’t want ANYTHING to eat. Our therapist has let us try everything. Where are you located and how do I find a feeding program? I didn’t even know there were such places. We live in a small town and I wonder if we are getting the right care sometimes!! Any help you can give would be Great!!


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