Re: G-tubes - (Jodi)

[Guest guest]

Jodi,

You said,

>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.

I am sorry if somehow I offended you. I am totally confused by your

comments. I guess I most certainly can be characterized as

enthusiastic about something that has helped my family and thought

it might be of benefit to others. If you feel there is some

ulterior motive than again I am confused. Yes, my posts have been

long, but this is fairly complicated material, and, at least in my

opinion, needs careful explanation as best as I can provide as a

layperson.

I would think if someone made many of my points in a half paragraph

than people would role their eyes (maybe they do anyway) and then

perhaps question the validity. I guess in the length, I am hoping

to create validity since it is my feeling much of this material is

new to most people, especially since a year ago it was totally new

to me and I was confused and questioned it then. My idea was to put

material out and let people sort through it and if they didn't

like what they read then they can just move on to something else.

>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 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.

Again, I am totally confused. I have never discussed my

daughter's diet as it relates to children with a G-Tube's. I

have absolutely no experience there and have said as such. I did

ask two questions about how it works, but to construe this as giving

advice, you have lost me. I believe that people on this list are

adults and from what I have seen their conversations are give and

take, and yes even at times opinionated. I have stated what I have

encountered and the successes my daughter has made.

Beth

>

> 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