tube-fed consult update/J-tube?

March 4, 2004

Hi,

Said I would let you know how the consult went.

Because of Lynds and her J-tube not G-tube, they will not start the

diet until we see a GI doc. Are worried about going from an

elemental formula to fat, as well as the feeding going into the

small intestine instead of the stomach. The dietician wants a G-I

doc to help with the mobility/absorption questions. Also, want to

have someone on board that could deal with reflux and slow mobility

if they become an issue. So, we are trying to get in to see them

ASAP so that we can start the diet before the dietician leaves on

maternity leave. The only catch is this: the peds G-I docs won't see

her because she is over 18 and the adult G-I docs don't have any

knowledge about the diet - so they are " checking into things before

they make an appointment " ! What a line huh! (Amazing that no one is

considering the fact that she is 60 pounds and 4 feet tall, only

that she is 19!) So, I'm giving them today to " check " and tomorrow

will start the bombarding process to get her in. We need to see them

by late next week so we can get in to start the diet before the

dietician leaves on maternity leave. As long as the current

dietician starts the diet, the fill-in dietician can carry us

through the 2 mo leave.

So, worse case would be that we can't get her in with enough time to

start the diet, then they would make us wait until mid June. They

will start the diet, it is just a matter of when.

So, unless the lab tests or bone density test they did yesterday

come back showing a problem, there is still a chance we will be on

the diet before the end of March! Hoorah! Has been a long wait, but

we are seeing the light at the end of the tunnel. Just hope we can

get to the light in March and not have to wait until June!

Thanks for the support - will let you all know how we progress.

Marsha, mom to Lynds

March 4, 2004

Marsha,

It sounds very wise to me to change to a G-tube from a J-tube for the

diet. There are lots of difficulties even for people with normal eating

patterns. Maybe you should wait a few weeks until everything has settled

down with the change to the G-tube before starting the diet. Even then,

you should probably start at a lower ratio, 3:1 max, and work up.

If you have been seeing the peds docs in the hospital for your child,

maybe you should push to have an exception for her. Maybe speak to the

patient advocate or someone in the administration. The peds doctors will

be much more familiar with your child and with the diet and with the

g-tube, etc.

Bill

betheorange wrote:

> Hi,

>

> Said I would let you know how the consult went.

>

> Because of Lynds and her J-tube not G-tube, they will not start the

> diet until we see a GI doc. Are worried about going from an

> elemental formula to fat, as well as the feeding going into the

> small intestine instead of the stomach. The dietician wants a G-I

> doc to help with the mobility/absorption questions. Also, want to

> have someone on board that could deal with reflux and slow mobility

> if they become an issue. So, we are trying to get in to see them

> ASAP so that we can start the diet before the dietician leaves on

> maternity leave. The only catch is this: the peds G-I docs won't see

> her because she is over 18 and the adult G-I docs don't have any

> knowledge about the diet - so they are " checking into things before

> they make an appointment " ! What a line huh! (Amazing that no one is

> considering the fact that she is 60 pounds and 4 feet tall, only

> that she is 19!) So, I'm giving them today to " check " and tomorrow

> will start the bombarding process to get her in. We need to see them

> by late next week so we can get in to start the diet before the

> dietician leaves on maternity leave. As long as the current

> dietician starts the diet, the fill-in dietician can carry us

> through the 2 mo leave.

>

> So, worse case would be that we can't get her in with enough time to

> start the diet, then they would make us wait until mid June. They

> will start the diet, it is just a matter of when.

>

> So, unless the lab tests or bone density test they did yesterday

> come back showing a problem, there is still a chance we will be on

> the diet before the end of March! Hoorah! Has been a long wait, but

> we are seeing the light at the end of the tunnel. Just hope we can

> get to the light in March and not have to wait until June!

>

> Thanks for the support - will let you all know how we progress.

> Marsha, mom to Lynds

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

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>

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March 4, 2004