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Re: Blau update

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Joe,

What tests did they do to find out about the premature

Adrenarche? Also what signs of puberty are you seeing. Jon is also

9 and I keep thinking all of this is around the corner and the next

medication choices are right behind. Jon also did the glucose

tolerance test and his bsl were taken before drinking the " pop like

liquid " , and several times after like 30 minutes, 60, 90 and 180 (or

something like that)

Pattie

> saw his endocrinologist yesterday. Since he had his G-tube

removed last

> month, he has been eating pretty well, and he gained some weight:

he's now at 44

> lbs. He's grown another inch in the past 4 months: at age 9,

he's now 47.5 inches.

> He's still at the 3rd percentile, with projected adult height of

about 5'4 " . We'd like to

> add a couple more inches to that. He has been on the same gH

dosage since he

> started almost 2 years ago, but his Dr. (who is fairly

conservative) doesn't want to

> increase his dosage until he gains some more weight.

>

> 's most recent bloodwork confirms our suspicion that he is

in premature

> adrenarche. However, his Dr. doesn't want to give him drugs for

it. He said that the

> drugs that would be used are steroids, their use for stopping

adrenarche is

> experimental, and they have some negative side effects, including

reduced appetite

> (we certainly don't want that!). However, if did show

signs of early puberty, he

> would give him hormone treatment to delay puberty.

>

> One disturbing thing about 's bloodwork is that he showed he

has high

> cholesterol. So we're modifying his diet: low-fat instead of

whole milk, and less

> high-fat foods like ice cream. Hopefully he'll still gain weight!

>

> also had a glucose tolerance test, which came back in the

normal range,

> although I don't think it was done correctly. They measured his

fasting glucose level,

> but they didn't measure his response after oral intake, as

described in her

> post about 's test. We'll talk to the Dr. about repeating

that test.

>

> - Joe

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