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.
Simple!
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!
I am trying to make light of the situation, but indeed, Elliot’s gallbladder will need to be removed in the very near future. I think that it is warranted as a pancreatic attack is not something we want to mess around with. Even though, I am not crazy about removing an organ (albeit a superfluous organ) from my two year old boy’s body.
