Inpatient Intensive Feeding Programs

[Guest guest]

I don't know if this will be helpfull. My son who was a non-eater and only

drinking pediasure by bottle with a nipple entered an Intensive Inpatient

Feeding Program here at Children's Hospital of Wisconsin. It was intensive! I

was part of every feeding from day one and observed for ?3 days then was coached

via an earpiece what to say and do to get Nate eating. We were in an

observation room with video etc.. Nate had to lose all control of eating....I

was in charge of what he ate and drank. We were able to get through the extreme

resistance and get him eating. His behaviour and actions...very deffensive and

resistant and fight or flight type response. He had to learn to swallow!

Drinking from a cup brought out an alarm in Nate (a fight or flight response).

The Behavioural psychologist tried a syringe for liquids and he was little bird

with the syringe...at first only 1/2 cc then up to 5 cc per swallow. We counted

and this seamed to que him to swallow. Then the flexiable tubing from the Honey

Bear cup was put on the syringe and he transitioned well to this so the next

meal we went for the Honey Bear cup and he transition to it without fighting and

crying and gagging and choking. It took weeks to be able to get him to learn to

consecutive swallow but he is doing it! He also does some sucking on it but we

still after a month cannot let him have control control.

He is feed puree foods and some are more texture than others. I use the Magic

Bullet to puree everything. The goal is for age appropriate foods and lots of

flavors. He is still resistant but I was taught how to get through each meal

and he is meeting his goals other than the drinking of water...just don't have

the time many days to push water.

We were in the hospital for 10 days.....10 long long days!!! In December before

Christmas. The insurnace company initially denied it but the GI doctor was

able to call the physician from the insurance company and plead Nate's case.

The bills are trickling in and even thought the insurnace company approved it

looks like we will be paying for the Behavioural psychologists bills, but most

of the other stuff I am crossing my fingers is paid for. We only have private

insurance for Nate. However, the program worked and he is eating so even paying

for this ourselves is so so worth it. It didn't end the long term struggle it

will be to advance his diet and we will take it slow. He needs to learn to

chew. He has never had anything yet in his mouth to chew.

Right now he eats 3 meals a day and has a maximum time of 20 minutes to eat. He

has once cup of whole milk with Carnation instant breakfast which he needs to

drink minimum of 5 ounces. He is given a main entree and then fruit/vegatable

and then gogurt/pudding/ice cream. He needs to have a minimum of 5 ounces which

he pretty much has 8 ounces of puree and 7 ounces of the Milk with Carnation

instant breakfast. He has a snack at school....fruit puree or gogurt and water.

His goal is 20 ounces of Milk per day and 12 onces of water. The only thing he

will willing eat is gogurt!

Nate is hypothyroid and has been on supplement since 14 months of age. He was

increased from 25 mcg to 37.5 mcg during his December hospitalization. He needs

to have his blood rechecked and I will bring him in on Monday. I have a feeling

it is too much for him...his behaviour has changed and I am not liking it...he

seams too hyperactive and being very naughty...yet he is sleeping okay. Maybe

it is just the lack of control thing with us making him eat.

The hosptialization was the answer for Nate. He became very weak initially with

not eating and drinking and was quickly in trouble. He had to have an IV and

get fluids during the night to makeup and try to get him hyrdrated properly.

Nate did not have a g-tube as a backup. I was surprised how quickly he started

spilling proteins and ketones. He was in the 5+ almost instantly by the end of

the first day.