Intensive Feeding Therapy: Ben update October 2010.


It has been quite some time since my last post.

Ben is now almost 4 1/2 years old, and weighs just under 30 lbs.  He enjoys tremendously good health, and for that we are grateful.  He attends preschool three afternoons per week.  He does not walk, but is quite skilled at “army crawling”.  Over the last month, for the first time, he has been venturing from room to room in the house.  He now makes his way to the foyer, dining room and kitchen from the living room!  This means that we now have to be much more vigilant since he no longer stays in the room in which he is placed.  He is able to stand and lean onto furniture for support, but for some reason he doesn’t enjoy doing this.  He also has a gait trainer, but doesn’t seem motivated to walk yet.

Ben doesn’t talk or use sign language yet, but he does make lots of sounds.  At preschool his teachers are trying to get him to use devices with simple switches and buttons to make choices with the idea of perhaps eventually getting him to use a picture exchange system or a communication device one day, but it seems like he’s still a long way from being able to do that.

He still wears hearing aids, and he doesn’t really seem to mind them.

He wears glasses, and it is quite a struggle to get him to wear them consistently.  He can yank them off with lightning speed, and then he enjoys playing with them by swinging them back and forth with his fingers.

By far our biggest struggle with Ben since birth has been with feeding.  He is still 100% g-tube dependent, and has been extremely resistant to transitioning over to oral feeds.  Sometimes he seems to do really well for a time, but more commonly he fights, cries, arches, and wants nothing to do with spoons and “real food”.  We have been through outpatient OT at home through early intervention for Ben’s first 3 years of life, and we have been following up periodically with the feeding clinic at our local university hospital with only limited success.  Ben’s therapists at preschool are great for most things, but  frankly they have not been all that helpful for feeding therapy.  This is surprising to me since he attends a school for children with special needs.

So basically we have made very little progress with outpatient feeding therapy so far.

This summer we began the process of having Ben enrolled in the intensive day treatment program at the feeding clinic he has attended since he was a year old, and getting the required insurance approval for the program.  Several months later we received approval from Medicaid (but we were denied by our private insurance carrier.  I can’t understand why they denied it; tube feeding is very expensive.  So far they have paid out thousands of dollars for his feeding pump, formula and supplies over the last 4 years.  You’d think it would be in their best interests to pay for a treatment program to wean him off tube feeds, but I digress.)  So with Medicaid approval in hand, last Tuesday Ben began a 4-5 week program of intensive feeding therapy.

We were extremely anxious about how Ben would react to this program.  I took the day off work to go to his first day there.  They’ve got a great kid-friendly, relaxed atmosphere with two rooms full of toys, a room for naps, a big kitchen, and a TV/DVD player.   This is fantastic for us since two year old Nate also has to spend his days with Mark and Ben at the clinic.  Both Ben and Nate enjoy playing at clinic.  Even with their happy, laid-back approach, the director and therapists are all business when it comes to feeding sessions.

Ben arrives around 9 am after a 1 hour drive.  Over the course of the day, he has nine or ten fifteen minute feeding sessions with breaks for naps and lunch for Mark and the therapists.  They wrap up for the day somewhere between 4 and 5 pm, and drive an hour back home.  The program runs 5 days per week, and is therefore quite tiring for Mark, Ben and Nate.  While Ben is here, he is of course not attending preschool.  Logistically having Ben at feeding clinic every day has been challenging since I still must work full time, and we have two older sons in school.  Fortunately we have good friends who have been tremendously helpful and willing to help us pick them up from school when needed.

Right now our first goal is to get Ben to willingly open up his mouth to accept food without fighting.  The first thing they did was to switch him from a spoon to a Nuk brush, and for some reason, that really seemed to help.  Each session so far is about 15 minutes long, and Ben is given small amounts of food on the Nuk brush.  He is reinforced with a toy or music or something else he enjoys after he takes each bite.  They videotape each session, and weigh EVERYTHING in an attempt to quantify how much food he takes in with each feeding session.  We also have stopped Ben’s daytime tube feed boluses (we still give him water), but we are continuing his overnight continuous feeds.  Of course they will also be weighing Ben regularly at the clinic to make sure he doesn’t lose weight during this process.

After just the first day, Ben started opening his mouth for the Nuk brush where previously he’d just clench his jaws tight for me with the spoon.  He’s had 4 days of therapy so far, and although he is still not thrilled about feeding (especially at the start of each session), he’s doing SO MUCH better.  He’s starting to open his mouth up when the brush approaches now, and even smiles sometimes during his therapy sessions.  Also, with the Nuk we are able to place food a little further back on his tongue, and this makes it easier for him to swallow, and more difficult for him to spit out.  He is not doing as much tongue-thrusting or gagging either.

This weekend we have “homework”: we are responsible for carrying out the feeding sessions at home just like he has feeding sessions at the clinic.  We were given a detailed list of instructions for the weekend sessions, and even the home phone number of the clinic director in case we run into difficulties over the weekend.  Today we did six sessions with Ben and he did GREAT!  Maybe he has resigned himself to his fate.  I hope so!

We are still working him up to taking an ounce of food during a session so we can do a swallowing study on him.  We have been unable to do one so far because of his extremely limited oral intake, but perhaps we’ll be able to do that next week sometime, and go from there.

Overall we are very hopeful that Ben will continue to progress in this program, and will begin to take at least part of his daily feedings orally.  Maybe he’ll be able to enjoy some of our Thanksgiving dinner with us!

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12 Responses to “Intensive Feeding Therapy: Ben update October 2010.”

  1. Staci Says:

    Oh I am so excited for you! This just brings tears to my eyes! Hang in there! It will get easier! This is exactly like the program Vin has gone through! We are now eating 3 meals a day (puree) and are starting to work on chewing! Isn’t it AMAZING how much of this is behavioral? So proud and excited for you guys! PLEASE keep us updated!!!!! Go Ben GO! Vinners and I are cheering for you! HUGS HUGS HUGS!

  2. Lori Says:

    I am so happy to see Ben start to make progress again! It is going to really help Ben to be going through their program (thanks!!!) I currently have a few kiddos whom I am using the NUK and toothette with. So far so good! Keep us all posted.

  3. Edward Says:

    I am so relieved to hear that Ben is doing well. When Mark first told me about this treatment I was worried about the emotional toll that it may take on you all. I know it is still tiring, but knowing that he is succeeding in learning to eat has got to make it worth it.

  4. Karen Says:

    Thanks, Staci! I hope Ben does as well as Vinny with the feeding program! Best of luck with chewing therapy!

    Lori: if only Ben’s preschool had someone like you to work with him on a regular basis! I don’t know why they seem to be afraid of feeding therapy in general. Maybe lack of training?
    I hope they will be willing to work with him at school once he’s done with this intensive program. We’re probably going to have to push for that with this year’s IEP.

    Thanks, Edward! We’re trying to think about the end result rather than the gruelling process. It will be so worth it if Ben takes even half of his caloric intake orally.

  5. Lara Says:

    Karen, this is such wonderful news and kudos to you and Mark for being such persistent parents and advocating for Ben. It is easy to want to give up the fight but when you stick it out, the rewards are tremendous. I love reading about Ben’s progress and all your efforts for him.

    Take care,
    Lara

  6. Deb Says:

    Karen,

    Thanks so much for providing this update. Such a struggle you have and I always think about you and I have no idea how you do it! I commend you and Mark for persisting. Tube feeding, though frustrating, is probably easier than trying to work through this process. I love your blogs. Thanks!
    deb

  7. Michele Says:

    The best news I’ve had all week! Hurray for Ben. What a Thanksgiving it would be if my Joy-Boy could taste some of his dinner… Top of the prayer list this week (and the next couple of weeks too – hope that is all it takes)

  8. Christine Says:

    I think Ben is an adorable little guy. I also believe that it you and your husband are the most amazing parents!

  9. Aliyah Says:

    I thought you’d find this amusing– every now and again when I’m surprised at how big your boys are getting, I read your blog backwards. That way, they shrink! :D

  10. suna Says:

    well, you have your work cut out for you. thank you for posting. i is still shocking how much he looks like my boy.

  11. Jen Says:

    That’s wonderful that the therapy is doing so well and it seems like such a great environment.

    My son has similar feeding issues and I found a great website that has helped me understand what is happening http://childrenandbabiesnoteating.com/ . It has all kinds of information on kids who won’t eat, some of the reasons why and what can be done about it (treatment options). It’s definitely worth checking out.

    Best of luck to you.

  12. Kelly Says:

    Just found this blog by chance and have been reading all about your sweet family and amazing son Ben. It’s been over a year since your last update, however, and I’m so interested in learning how Ben is fairing and if he’s doing better with his feeding. I hope you’re able to spare a few moments to update again in the near future. :) God bless!


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