Re: G-tubes - Beth

[Guest guest]

Hi Beth,

I finished rereading Life Without Bread and things are definitely

sinking in more this time around. This is really great stuff. Some

of the things you have written about are now making more sense. I

plan to send a copy on to our doctor along with some of your other

postings.

I want to also say that I truly appreciate all the time and effort

you have donated to help us see another perspective. I fully

support your efforts even if sometimes your posts are long, but I

like the information and it is refreshing like Dayna said.

Jean

>

> 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