introduction and comments on diet in cf

August 5, 2003

Hello all!

I joined the list a month or so ago and mostly have been lurking. The recent

discussions about weight gain have interested me.

Our story is that at about 2 months old our son Henry was diagnosed with reflux.

He ate every hour, for half an hour. at 2 months he was eating over 30 oz. of

formula a day and by 4 months, well over 40. We were going through super sized

similac every other day at that point and were at 300.00 mo. for formula. At

four months due to what the doctor saw as reflux only, we were told to add 1

TBLS. of rice cereal per 2 oz. of formula. After gaining a little over a pound a

month, he gained a pound in a week, reaching the 10th percentile and in less

than a month jumped to the 25th percentile (for weight). He was not yet

diagnosed, this shift to a high carbohydrate diet allowed him to " catch up " , and

delayed his diagnosis. I am leaving out a lot of details, he was diagnosed at

5.5 months.

I am telling this story to introduce us, but to also mention that a high

carbohydrate diet may help some kids with weight gain problems. Right after

beginning enzymes, Henry stalled in gaining weight starting at 9 months for

about 6 months. He started gaining again after pushing a lot of juice and fruit

and concentrating his formula. As far as high fat foods, he runs into a lot of

problems with french fries. They largely seem to pass through undigested and the

amount of enzymes we give for a meal 4-5 ultrase regular, don't seem to be

enough (we were warned by some doctors not to go too much higher). We suspect

that french fries have lead to some intestinal obstruction (dios) so we are

currently avoiding them. We are giving him the veggie sticks snack food that

they sell in the natural food section, he seems to like them as well and they

look like fries.

I am wondering how much research has been done in diet with cf. Henry is in the

75th percentile for weight now, steadily gaining, but his favorite foods are

fresh fruit, wheat toast and bagels. We give him VRUIT to make up for the

avoidance of vegetables. He does eat cheese and drinks milk, but not tons of fat

otherwise.

I will end here and welcome any comments or feedback.

Robbins

mom of Henry 19.5 months with cf

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