Feeding Clinic Sucess

[Guest guest]

Hi Everyone,

I'm guessing not many children have as many feeding issues as our Tommy, (4

1/2), but I thought I would post this in case anyone would benefit. He has had

a g-tube since he was one year old due to extreme food aversion in part due to

breathing difficulties surrounding his heart defect ( now corrected) and partly

due to severe reflux, which he has since outgrown. Although over time he has

started to eat some puréed foods like yogurt and fruit, he wouldn't take much

variety, drink, or take any textured or solid foods. He has had local speech

and OT working on this for years.

After hearing about it from another mom whose child had feeding issues but not

DS, we applied for the Intensive Outpatient Feeding Program at St. 's

Hospital in ville, IN. It is run by Dr. Betsy Clawson, who was trained at

s Hopkins and used to run a similar program at Virginia Children's Hospital.

The program is 8 weeks long, but we are splitting it up into several stays. We

have finished 2 weeks of our first 3 week visit, and we stay at the

Mc House and attend 4 one- hour treatment sessions a day, Mon thru Friday.

Anyway, after just 2 weeks here, the change in Tommy is remarkable. He came

here needing about 48 oz. per day via g-tube, and now for the third day in a

row, he is taking this all by mouth! He drinks about 17 oz. of his formula

(we're using a squeeze bottle with a straw) and eats another 31 oz. in puréed

table foods. He will now eat anything puréed, from Indian food to Italian to

Mexican, and keeps trying (and eating!) new foods. He's doing a lot of oral

motor exercises and practicing chewing to get ready for solid foods. Most

amazing to me is that they have successfully taught him the skills he needs to

eat, like tongue placement and swallowing while drinking. He now looks good

when he eats- coordinated and efficient.

We come home next Friday, and then will come back a few more times this year and

hopefully be closer to eating regular foods independently by the time we've

finished the 8 weeks. Given the fast progress he's made, I'm really optimistic.

Not a lot of kids with DS have to be weaned from g-tubes, but I know there are a

variety of other feeding issues, and we've seen other kids with DS here getting

treated for things like difficulty chewing, extreme pickiness, or difficulty

with textures.

Sorry for the long post, but I wanted to let people know that the clinic is

there ( wish I would have known sooner), and make a plug for its effectiveness.

There are not many intensive feeding programs in the country. Also, our

insurance is covering it, and our lodging and meals are at the Mc

House. It's about 6 hours from South Bend, so a bit of a hike, but for us worth

every mile!

O'Callaghan

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