It's official: RSS diagnosis

May 6, 1999

Hi Everyone,

Well, today we took to see Dr. Harbison for his first visit. After 2 years

of specialists it was quite a relief to finally get some answers. Dr. H. thinks

has a " mild " case of RSS. He is 28 months, weighs 22 pounds, 32 inches

tall. She wants to put on periactin for 6 months and then begin a GH

treatment (he would be 3 then). She said one thing today which I hadn't heard

yet before. Upon examining she said that he was not calorically deprived

(we have been trying to pump in so many calories into this kid!). I said, " but

don't you think he looks really skinny and weak? " She pinched 's skin and

pointed out that indeed, has plenty of subcutaneous fat. The thin

appearance is due to the really low muscle tone and musculature in his body.

According to her, the reason she supports GH treatment is so that the muscles

can build up, and that is how a child gains weight. SHe also said that the

height/weight ratios can be misleading in an RSS child, because so much of his

weight is in his extra large head, so proportionately his body isn't really as

heavy as the percentile might indicate.

A few questions I have are:

--Dr. H. was concerned that we watch out for hypoglycemia. She thinks this

condition, left unwatched, can lead to later ADD. How do you all watch for

this?

--What are some of the pros/cons in using GH treatment for RSS kids? What

happens if you start GH treatment and then stop?

--Are there any other parents out there who have kids with " mild " RSS and are

trying to decide what to do about GH treatment?

Anyway, it was a great visit. By the way, one of her hints for feeding is to

give an evening snack of UNCOOKED cornstarch. This releases very slowly

during the evening and can reduce morning irritability due to low blood sugar.

(We find that is sometimes in a bad mood in teh morning until we give him a

bite to eat).

Thanks for listening,

Katy

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