re:feeding clinic

[Guest guest]

,

Thanks for sharing your experience with us.

We decided that we need to work a bit more on Tim's independent eating as

well as trying to see if we can get just a bit more calories in him a day,

avoiding the overfeeding problem he had at one time on the tube, but

maximizing things as much as possible. My husband just tried a new way of

feeding him in little spurts from an open bottle (probably eventually a

cup) that is working - which is good, since he was biting the nipple a lot

and giving my fingers pains over the long haul. He has also started eating

a small link sausage (50 cal) per meal this weekend - I was on a determined

shopping trip on Friday just to find things he might eat.

I think they said the feeding clinic is a 6 week commitment at once per

week, and since we have prior commitments for late July and early August,

I'm hoping to make more headway on our own before starting this process. I

know the lady is a dietician that believes strongly in g-tubes as part of

the plan, and I am concerned that we need to explore and make sure we know

where we stand before getting involved with her again.

Thanks for passing on some of what you learned. Some nutritional boosters

are harder because of Tim's lactose intolerance, but I'll take a look at

the Resource juice & moducal. Can these be purchased over-the counter? We

are currently using Pediasure and Complete Pediatric (another 30 cal

formula normally used for tube feeding but Tim has taken and sometimes

really seemed to prefer having mixed half/half with his Pediasure, but it

has beef and veggies), as well as Udo's Choice Pefected Oil blend (brings

to 45 cal/oz, very digestible oil, yet still a problem during colds/flu).

I've been thinking about asking for another perscription for Polycose - I

wonder if this is like moducal - it is a non-sweet carbohydrate calorie

booster we used with Tim's infant formula. I thought that when Tim can't

tolerate oil, this might give at least some boost. Also, maybe on a

regular basis.

Thanks again!

Inga

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Message: 13

Date: Fri, 16 Jun 2000 00:02:13 -0500

Subject: Re: feeding clinics

Hi Inga,

We have had wonderful experiences with our feeding clinic. I too heard

horror stories before I went. They way I handled it was to give the clinic

ALL the RSS info I had proir to our first visit. I gave them a list of all

his problems & the names of the doctors that handled them. We also receive

Josh's PT thorugh early intervention, so our case worker & PT also made a

point to stop in. Since our problem was more a nutritional problem rather

than an actual feeding issue I made it clear that I was there for guidance.

The appointments can be rather long (1-2 hrs) but I feel it was worth it.

We see a speech pathologist, she checks for oral motor control & watches

Josh eat. The dietician is wonderful, they will probably require you to do

a three day food diary. There is also a Nurse Practitioner who goes over

the medical history. My favorite in our group is our developmental ped.He

always makes me feel great about Josh's progress. He concentrates on Josh

physical & developmental growth. It's so nice to hear positive things. Our

doc is very open to discussion. Because Josh still eats fairly well day &

night, well, except for breakfast we have not placed a g-tube. I do feel we

may have problems when Josh comes off the bottle, but we'll cross that

bridge when we come to it. When our regular ped was pushing the issue, it

was this group of people who didn't feel he needed it at this time. They

did caliper testing & surprisingly he was at the 5% mark. They also turned

us on to Ensure pudding, Resource juice, pediasure & moducal. We saw one of

our doctors today & in 2 moths Josh has grown 2 inches & gained 0.5 lbs.

Don't get me wrong, some stuff you have to ignore. One of the speech path's

have me a copy of the " Food Rules " These are not rules I follow. It states

that you should only feed chilren at designsated times & places. While I

feel this might have been beneficial to my non RSS child, I don't feel it

applies to JOsh! Good luck! If you have any other questions- just ask!!

PS Make sure you include the RSS growth charts! !