G-tubes - Beth

[Guest guest]

Beth,

I have read your very long posts about cholesterol, weight gain,

diets, etc. While it is always interesting to learn new things, I

have to admit that I am not in total agreement with you; however,

everyone is entitled to his/her opinion on what works and does not

work. I'm glad that is doing well, is healthy and

thriving. I'm glad that it has worked for your family as well.

Now I have two things to add to the mix:

1- Your posts are too long. I appreciate your enthusiasm, but

perhaps you can find another way to share the information. It makes

me question the validity of your information when you ramble on and

on, as well as question your need to do so. It makes me wonder what

your true motivation is.

2- More importantly, I think you have to be VERY careful when

discussing the diet of a g-tube fed child. A child who is fed in

this manner MUST be carefully monitored by a GI doctor and a

nutritionist. Many calculations go into establishing this child's

balanced diet. The doctors that you are talking about do not deal

with children like this, so you must not try to force or scare your

ideas into their parents.

I DO have experience in this area. I have lived it for 16 years.

My son has been on total g-tube feeds, j-tube feeds, as well as oral

feeds. When he is sick and unable to eat orally, we must resort to

the g or j tube and it is a very big deal. Any miscalculation in

his formula that goes into that tube can send him into a bad state

and result in further complications.

I guess what I am saying is this: Leave the g-tube nutrition

alone. It's too complicated for a lay person to deal with. Moving

a child from g-tube feeds to oral feeds must be done carefully and

with the proper balance. If you choose to ramble on about the other

foods for the more " normal " child, then go for it. But you may want

to change your tactics because they are too long and too confusing

for many.

I am not trying to start a cyber-fight. I am just trying to refocus

your intentions and to ask you to be more careful with the way you

present your information regarding the tube-fed child. We don't

always have to agree - that's the beauty of America. But we cannot

pontificate and scare others into making them believe what we want

them to believe.

Jodi Z