Friday, February 6, 2009

Learning and said lessons

My mind is mush, but my hope is restored. While yesterday’s appointment at Children’s Hospital’s Feeding and Growth Management clinic was long and tedious (particularly with both boys and a husband who was off in never-never land), it WAS worthwhile.

We spent FOUR long hours speaking to a: speech language pathologist; a nutritionist; an Upper GI specialist; a well qualified occupational therapist and low and behold, an EXCELLENT developmental psychologist.

Primarily, I enjoyed the visit with the psychologist, and he was who I was most hesitant about originally. He noted, and quite frankly, that Elliot is NOT autistic. Elliot is moderately mentally retarded. I know this and I knew this. When asked if he treats children that fall on the autism spectrum AND have T21, he firmly stated “no,” and at Elliot’s age, in the doctor’s estimation, it is impossible to diagnose autism, when Down syndrome is present. He saw a social child that has his mind set on not eating. He saw a child whom has never learned how to eat.

Learned. Eating is a learned behavior, and Elliot has simply not grasped the concept of ingesting anything other than Pediasure.

We will take a tough love approach. And, candidly, I am mad at myself for not attempting something like this previously. It all seems so simple now.


Meal time:

1. All meals should be 3-4 hours apart.

2. Between meals, Elliot shall NOT have anything – no access to liquid, nothing…

3. During meal time, we will institute a feeding “trial” before allowing Elliot to have his Pediasure and his Pediasure must be ingested in 20 minutes or it will be removed.

4. The feeding trials will consist of 10 bites.

5. Acceptance for Elliot was defined as and successful opening of the mouth allowing me to “place” food in his mouth.

6. A simple command of “open” will be given, with the utensil placed near his mouth for 5 seconds.

7. We are to ignore refusal by keeping the utensil near his lips.

8. If Elliot refuses, spits, etc., we are to firmly state “NO” and turn away from him for 15 seconds.

9. If he accepts the food, HUGE amounts of praise are to be given.

10. I am to place 5 of Elliot's favorite toys in a bin and use them solely for feeding trials.

11. When he takes a bite, or merely allows me (or Jeff – but hey, probably me) to place food in his mouth (swallow or no swallow) he gets the toys for 30 seconds.

12. When finished with the toys, I state “All done,” and remove the toys and go in for another bite.

**I will do this for one week, three times per day and report all findings back to the physician. The trials are to take place in the kitchen, at the table, in his high chair ONLY.

Common sense! We are NOT to force feed Elliot. We are not to place him in a regimented feeding program – 8 hours per day for 8 weeks (as suggested by many a physician). According to the psychologist, this would only traumatize our Wee E even more. I loved this doctor.

On a different note, we ran a: CBC; ESR Westergren; CRP; Chem 14; Amylase; Lipase; Prealbumin; IgE Level and a Vitimin D. We also are checking for Celiac with a specific panel. We will have an Upper GI x-ray; an upper endoscopy; another swallow study and a feeding evaluation. We have to rule out anything medical, but there was overall agreement (between all docs, specialists) that the hypothesis of “Feeding is a learned behavior; Elliot has not learned.” was the most accurate of theories.

So, optimism is back in place. Finally, someone with confidence in our son. Thank GOD! Wish us luck. And, pray that all of the tests come back normal. It is my feeling that they probably will.

Just another bump in the road with Elliot. Many more to come I am certain. But, bumps are just that...bumps!


luvmypeanut said...

Was it Dr Prestridge for the GI? She did Alex's endoscopy. She can come across as stern, but really is a good doctor. Alex looked up her skirt once! LOL

I hope things start looking up for Elliot!

Megan said...

That is GREAT!! I hope that it goes well, and that you see results. Feeding frustrations are SO hard and so emotional. HUGS

Megan & Abby (another kids with T21 and feeding issues)

Lynanne said...

What a relief that you have a plan!

Not only is eating a learned behavior, it is also a sensory one. Many individuals are sensitive to new textures, tastes, temperature, etc, completely unrelated to autism.

Did they suggest starting with pediasure mixed with rice cereal? It would be a familiar taste and you could start with a thinner consistancy and work your way up to something more solid. Then you can mix different pureed foods into the rice cereal (to keep the texture the same), or just go directly to other foods, depending on Elliot's preferences. I read somewhere that it can take 20 times or more before a child accepts a new food and most parents will give up after 4-5 times.

It's only a suggestion, of course (and I don't have a child with T21 - just feeding problems due to autism). If your doctors had other ideas, listen to them first. :)

Good luck! Keep us updated on his progress!

Stephanie said...

Yay for Elliot! And Double Yay! for you getting a second opinion.

datri said...

I'm so glad that you have a plan -- and a sensible plan, too. Hope all goes well with Elliot.

Although I have to disagree that you can't diagnose autism in kids with Down syndrome. If you ever meet Kayla (or some of the other kids I know with the dual dx), well, you KNOW she has autism. She's nothing like her peers with just Down syndrome alone.

Kelly Zimm said...

So glad to hear you have optimism back on your side; that's so important!
What great appt!
Keep us posted how he does with his new schedule :)

amy flege said...

i think that sounds like a awesome program!! I know you are so frustrated and at your wits end but hopefully this will work!! tough love is hard but you can do it!!!!
hugs honey!

Melissa @ Banana Migraine said...

This is really good news! It's going to be tough, but I know Elliot and you can do it!! I'm glad you found a Dr. that seems to really take the time to KNOW Elliot! Thinking of you sweetie!! xoxo

Megan said...

Michelle - how is it going so far?? I've been thinking about you!

Megan & Abby

Michelle said...

I'm so glad to read you had a very productive appt and a dr who gave you a different perspective and some hope! Hopefully these feeding trials are going well!

Carey said...

Yay! That sounds doable right? I'm anxious to hear how it's gone as I know this post is a couple of days old. Hopefully you've still got some of your sanity! Good luck!

Jessica said...

I'm so glad you guys have a plan! We need to do the same thing with Joey!

And I just passed on a blog award to you, go my blog for details :)

Michelle said...

Michelle - finally having time to catch up on posts. So happy to hear you had a worthwhile appointment. How is it going so far? Praying for you guys and sending lots of hugs!