Thursday, August 4, 2011

Feeding Therapy - DONE!

Once again I have heard the dreaded words, "There is no reason to continue this because I honestly cannot help you anymore.  I have never seen a child like Allie and I've done everything I could". 

I of course didn't hear that exact wording from Allie's feeding therapist, but it sums it up pretty well.  And honestly, I agree with the therapist 100%.  Even though I agree with her, it is still hard to digest that another professional is completely stumped by little Allie.

We have been going to feeding therapy for probably 6 months now and with therapy, we have accomplished several things:
1) Allies rotary chewing has improved
2) Allie's pocketing of food has improved (at the beginning of the meal)
3) Verified Allie has absolutely no food aversions
4) Verified that Allie can swallow with no difficulty
5) She will come to the table to eat (or start to eat actually) - willingly!

These are great accomplishments but we are currently at the point where it's obvious her eating is irregular and not consistent.  There are days she will eat at therapy with no problem and other days there is no way we are getting her to eat.  On the days that she does eat, we always end up bribing her with a new toys, etc.  There is no doubt Allie eats better at therapy than she does at home simply because they have a huge playroom she gets to go into if she eats.

With everything our therapist has observed, she simply thinks Allie doesn't feel the "hunger sensation".  There is nothing driving her to eat besides when we bribe her with a new toy.  Our therapist doesn't want to waste our time when she truly doesn't know how else to help Allie. 

Our therapists first thoughts on Allie (6 months ago) was that Allie's eating was behavioral.  However, after watching Allie and working with her feeding, she now knows Allie's eating is not behavioral.  Simply Allie will come to the table to eat its just not regularly.  Our therapist is stumped by Allie - just like every other professional we have met so far.

So, at this time, we are done with feeding therapy but will continue with her speech therapy twice a week.  I'm sad to see us ending feeding therapy but I agree it was getting to be a waste of time.  I'm fortunate our therapist even came to our house to see our routine and help with Allie eating at home.  Unfortunately, it was not successful but not because we didn't try everything - I truly believe it's because Allie simply doesn't feel hunger.

We will look into therapy again down the road when we have more knowledge of why Allie is not willing to eat orally.  At this point, we will continue to offer Allie food at each meal and if she chooses to eat - GREAT, but if she chooses to not eat, that's okay - we'll give her a tube feeding :)

Chloe ready for soccer practice and Allie striking a pose


  1. Enjoy the freedom of kicking the pointless feeding therapy. We sure are!! I agree-there will be a time for both our girls to go back...but when it's an utter waste of time and just frustrates the child...what purpose is being served.

    LOVE her poses : )

  2. Good for you!!!! One day she'll be able to tell you...that's what we're waiting for with Ava. Until then, we nourish her with the best food we can!

    Hang in there!


  3. I have been trying to follow this blog because Allie sounds exactly like Emma. My Emma is a mystery! but I think I missed it somewhere, I thought you were tube weaning? Did it not work at all? Emma doesn't eat orally and we have no clue why!

  4. I'm sad to hear that your feeding therapy did not work. In all my years of teaching children to eat orally, I have never uttered the words, "I cannot help your child".

    I hope that when you are ready to try again that you get the right supports to be successful.


  5. There are so many useless feeding therapists out there. At least your therapist was honest enough to admit she couldn't help. So often they keep going and nothing improves.

    But don't give up. Lack of hunger can still be helped with behavioral therapy. Actually, it's really common for ng-tube and g-tube fed kids not to feel hungry and more importantly not to connect any feeling of hunger that they might have with eating food.

    I really learned a lot from this website . It helped me to know we weren't alone and helped me find a therapist who could actually help my daughter.

    I hope you find someone who can help. In the meantime your daughter looks super healthy!