Re: Feeding clinic the good bad ugly?

[Guest guest]

Hi

My daughter sage is also 100% Gtube fed, she is not RSS but was SGA and has

severe gastro reflux and speech delays. WE live in Bermudaand she has an

appointment on the 26th of Feb at the Kennedy Krieger Institute in Baltimore,

land with a team of many specialists for a consultation. They also expressed

to me hearing how she is so against oral eating and because of her vommitting

and her past history of hypoglecemia that it is highly recomended that she be

an in patient for 6-8 weeks. I also am not thrilled about living in a hsopital

for all that time. However I am ready to take the next step to help her be more

independent. What feeding clinic have you been recommended to?

sage is 2 years and 8 months. I am hoping that she is not to young to go

through all of this, but at the same time I want her to go to pre-school and be

ready for regular school at 5. It really is a tough call!

Gretchen Canning

Mom to Chloe 5 1/2 and Sage 2 years 8 months, SGA, G tube and reflux 27lbs and

35in

--

--------- Original Message ---------

DATE: Wed, 14 Jan 2004 14:39:42

To: RSS-Support

Cc:

We have been recommend to do a inpatient 8 week feeding clinic to

start to wean off the g-tube. has any one done this and what was

your experience.

We have done some OT/SP before the g-tube was place 5/29/03. Tori

is getting some OT in the school setting. Takes a little food in by

mouth but not much. We have done periatin but stopped it the

12/17/03 until she is more interested in eating. After stopping it

she has been putting more food in her mouth.

Is it better to start with outpatient and then if need be do

inpatient? Just the though of being in the hospital that long I

don't like. But still looking into it.

Any input would be helpful

Maloy mom to Tori 27.13lb, 3yr6months

[Guest guest]

Maloy,

I know I've spoken with you about the feeding clinic that attended, but

for

the benefit of others who might be wondering, I'd thought I'd share again.

attended Kluge Children's Rehabilitation Center in Charlottesville, VA in the

summer

of 2002. I did a lot of research on feeding programs over the years, and

finally

decided on this one due to all the positive responses I received as well as the

cost &

amount of stress this would put on & the family.

Kluge is an outpatient program, but it kind of feels like an inpatient program,

because you are at the hospital for about 8 hours a day for 2 weeks (sometimes

less

depending on the severity of your child). The program only takes 2-3 children at

a

time (usually 2). Every child in the program gets feeding therapy 4 times daily

(breakfast, snack, lunch, and another snack) in addition to recreational therapy

once

daily. If your child needs it, he/she will also get occupational therapy and

physical

therapy one time daily. The recreational therapy is especially effective for

kids who

have sensory integration problems, because they alternate days between

horticulture

and arts & crafts/cooking activities. These activities usually involve getting

messy,

which a lot of our kids do not like or getting to eat whatever they made. Of

course,

OT also addresses sensory integration dysfunction. had everything

except

physical therapy. All are half hour sessions, so that took up 3 hours of his

day. The

rest of his day was spent in school. They have a school program with certified

teachers. I can't remember if the minimum age requirement for school is 2 or 3

years

old. Your child can come & go, depending on his/her therapy programs. They

separate the younger children from the school-aged children. When we went, they

were having summer school, so it was more of a fun curriculum instead of an

academic one. They studied famous artists & created paintings to put in an art

showcase around the hospital. really enjoyed this part of the program.

By

the way, the cost of this program is much less expensive than other feeding

programs, especially inpatient ones. I know it has gone up since we were there,

but I

believe the total cost was no more than $7500, and our insurance covered most of

this.

I heard Kennedy Krieger mentioned by someone. This is an 8 week inpatient

feeding

program. I checked into this one when was about 2 years old. This

program

has a very behavioral approach. They take data on everything. I think they are

more

data driven than actually instructing how to eat. I believe that is why the

program is

such a long one. Maybe if anyone on this list serve has been there, they can

shed

some light on this. I checked the price of this program 8 years ago and it was

$1500/day or 8 weeks for a whopping total of $84000. My insurance would not

cover this. I spoke with a few people in my area who had attended this program

and

none of them were that successful. When requesting info from Kluge, however,

they

provide a list of contacts & data on the kids who have attended the program &

there

was a very high success rate. Everyone I had contacted about this program was

extremely impressed.

I'd like to add that was 8.75 years when we attended Kluge (one of the

oldest patients to ever go there). Most of the patients are between 2 & 3 years

old.

The older the child, the more difficult it is to get him/her to eat.

has had a

g-tube his whole life. Before attending Kluge, he was almost 100% tube fed.

The

only thing he would eat was pudding and drink water. We even had to force him

to

eat pudding though. When he left after 2 weeks, he was getting about 50% of his

calories from tube feedings & eating orally the other 50% of the time. He did

even

better when we came home and went down to 25% on his tube feeds. However, a few

months later, he declined (I believe mostly due to behavioral issues) and we

gave him

a break for awhile. He is at the point now, where he is getting about 75% of

his

calories via g-tube, but he is willingly attempting to eat meals/snacks and

actually

requesting foods, which he never did before in his whole life.

If anyone would like to contact me privately about our experience or for contact

information for Kluge, please feel free to do so at capuano_k @popmail.firn.edu

(no

space).

Kim

> We have been recommend to do a inpatient 8 week feeding clinic to

> start to wean off the g-tube. has any one done this and what was

> your experience.

>

> We have done some OT/SP before the g-tube was place 5/29/03. Tori

> is getting some OT in the school setting. Takes a little food in by

> mouth but not much. We have done periatin but stopped it the

> 12/17/03 until she is more interested in eating. After stopping it

> she has been putting more food in her mouth.

>

> Is it better to start with outpatient and then if need be do

> inpatient? Just the though of being in the hospital that long I

> don't like. But still looking into it.

>

> Any input would be helpful

>

> Maloy mom to Tori 27.13lb, 3yr6months

[Guest guest]

The other messages are much better and very comprehensive. The only

comment I would make before going into an inpatient, is how was your

child's appetite BEFORE the g-tube.

The reason I say this is because almost every child who is tube fed

(either g-, j- or PICC catheter line) will have a descreased or non-

existant appetite. My own daughter had her incredible appetite go

to ZERO when she was catheter fed for 2 months. I was shocked. She

wouldn't put anything in her mouth. They warned us, so they got her

weight up about 3 or 4 pounds HIGHER than they wanted, then took the

catheter line out cold turkey. It took about 2 weeks (they had us

start the Periactin a week prior to get her appetite up) before she

started wanting to eat again.

Jenn

> We have been recommend to do a inpatient 8 week feeding clinic to

> start to wean off the g-tube. has any one done this and what was

> your experience.

>

> We have done some OT/SP before the g-tube was place 5/29/03. Tori

> is getting some OT in the school setting. Takes a little food in

by

> mouth but not much. We have done periatin but stopped it the

> 12/17/03 until she is more interested in eating. After stopping

it

> she has been putting more food in her mouth.

>

> Is it better to start with outpatient and then if need be do

> inpatient? Just the though of being in the hospital that long I

> don't like. But still looking into it.

>

> Any input would be helpful

>

> Maloy mom to Tori 27.13lb, 3yr6months