Feeding clinic appt. & big decisions to make on gtube feedings

March 22, 2005

Hi all,

Colin just had his feeding clinic appt. today and basically we were

given an ultimatum that we either follow their approach for weaning

a child off of a g-tube or Dr. Harbison's. They don't agree with how

she does things and don't believe it will be successful for Colin.

What they are proposing is that we eliminate the night time feeds to

allow Colin to develop a regular hunger pattern and move those

calories to the daytime. Dr. H wants us to eliminate all daytime

bolus feeds and only use the pump at night. If we choose to work

with Dr. H, then they don't want to be involved. They will allow him

to continue working with his feeding therapist but I know she will

give a lot of resistance because she feels strongly about their

protocol.

I just don't know what to do. The problem is that we live in Oregon

and seeing Dr. H on a regular basis is not going to work for us. We

do have our first appt. with her in May so we won't make a decision

until we have talked over the pros and cons with her. But going

against an RSS expert seems like the wrong thing to do when the

local team has maybe worked with 2 or 3 RSS cases.

Has anyone been successful in weaning off of the g-tube this way?

They made it sound like Dr. H was so off base here.

He has increased his oral intake from an average of 500 calories per

day to around 600 per day within the past 6 months, but he is losing

weight since we eliminated daytime bolus feeds. He dropped a little

over a lb. He is 32.8lbs and 40-1/2 inches at 4 years 3 months. His

height is between 40-50%ile, but his bone age is also advanced a

year past his age now.

Does anyone have any thoughts for me?

Thanks,

Colin (RSS, gtube) and Hayden - 12/6/00

Grant - 12/30/03

Recommended Posts