Re: Ot and feeding
Gary Bangs (gbangs@earthlink.net)
Sat, 02 Mar 1996 23:47:00 -0800
Michael,
Taylor's OT is going well. What they are working on now is his tactile
defensiveness. He has what they call 'sensory integration problems'.
Basically he get overwelmed by tactile imput. He loves deep touch, like
hugs, but has a real problem with light touching. This tactile prob is most
appearant in his hands, feet, and mouth. He will only touch things with the
tips of his fingers, hates to have his hands and feet dirty, will not go near
dirt or sand,etc. As far as his feeding he only eats liquids and very
purreed foods. He does no chewing, and has a problem moving food from the
front of his mouth to the back. He has a very hypersensitive gag reflex.
Weight gain has ALWAYS been a prob for Taylor. In fact his little brother
currently outweighs him. The things we do for calorie upkeep are: a
tablespoon of vegtable oil gets added to his purreed meats, brown sugar gets
added to his fruits, and he drinks carnation instant breakfast instead of
plain milk. The carnation breakfast has more protein, fat, carbs, and
calories than pediasure, and costs so much less. He does not get water or
juice, because if he's actually going to put something in his mouth, it MUST
be nutritious and high cal. Taylor has had oil and sugar mixed with his food
since he was in the NICU. For the first 5 mo. he got a mix of breastmilk,
MCT oil, and polycose. THen I dried up and we had to switch to formula. He
had Progestamil, mixed heavy (5 scoops to 8 oz instead of 4) and the oil and
polycose. Progestamil is 'predigested' so I was able to feed him every 2 to 3
hrs. Regular formula is too heavy for babies who must eat so often. Then at
about 16 mo I switched to Pediasure. Then just recently, a nutritionalist
told me about the carnation. He actually has had the strongest weight gain
ever since he's been taking the carnation.
I'm sorry to say that I have no magic formula to alliviate the food aversion.
We have tried for almost 2 yrs to slowly add texture, but he always gags or
refused to eat all together. Taylor also does not respond to hunger. If i
did not force him to eat. He wouldn't. Several times different therapists
have asked me to bring him in 'hungry'. The record is 14 hrs without food,
and he still put up a fight.
I am told this all stems from having the tubes. He never learned to move his
tongue in the normal way most infants do because there was always all that
stuff in his mouth and throat. He hated the vent tube and would pull it out
at least once a day. I know that he remembers this, because to this day he
can't stand to have anything come toward his face and mouth.
I know it sounds discusting to add oil to everything. But it's a must to
keep his weight gain going.
Hope this was of some help.
Tammy,