RE: G-tubes - Beth-Jodi and anyone else

[Guest guest]

In the spirit of America and being entitled to my own opinion, I have to say

I have enjoyed Beth's posts. Her enthusiasm is refreshing (and it must be

time consuming for her with all that typing one handed) and interesting. It

seems as though she is doing the best for her child just like the rest of

us, and I appreciate her taking the time to share what has worked so well

for her family. Others have asked questions and she has taken the time to

inform and educate while constantly recommending we read the book for

ourselves and not just take her word for it.

I hope that no one alters their child's nutrition or medications without

first consulting their physician, but I for one enjoy educating myself and

looking for alternatives to traditional methods. I have thoroughly enjoyed

this particular thread and encourage Beth to continue. Just like any other

post, I can choose to read it, skip it or delete it. I admit some I delete,

but most I read and find myself more and more intrigued. I'll probably pick

up the book Beth recommends and discuss it with our healthcare providers.

I always thought the entire point of this list serve was to support and help

one another. I think sharing what works for our families is an important

part. My family would not be where it is today without the support and

information I have gained from this group. My daughter would have never got

a g-tube, started Periactin essentially be doing as well as she is today.

It is the advice of others that have kept her g-tube site granulation tissue

free. We would have never gone to see Dr. H without the many encouraging

posts about her care. Our lives are forever changed for the better because

other's shared what works for them.

I for one hope everyone continues to share and encourage one another. If the

posts get too long. . . I'll simply click delete and move on. Just like any

other information shared on this list serve I take what I can and try to

learn from it. Sometimes it comes in the form of advice and others, as in

this case I believe, in the form of information.

Dayna

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From: Jodi Zwain

Sent: Thursday, January 27, 2005 8:34 PM

To: RSS-Support

Subject: G-tubes - 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

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