RE: Endocrine/Genetics appointment re: R.

[Guest guest]

Hi ,

Glad to hear it was a somewhat postive visit. Dr. Holm sounds like she is

very thorough.

I wonder why the advanced bone age? RSS kids are know for having advanced

bone age in the " middle years " according to some of the literature. May be

this is another clue about RSS.

I hope you get soem positive results soon also.

I have been holding back some e-mails about school because they will send me

down that profanity trail in a hurry.

Ken M

Endocrine/Genetics appointment re: R.

Hi gang,

We went for our first visit with Dr. Holm yesterday afternoon. First we

were visited by an Endocrine Fellow. For some reason he didn't know we

had been followed by Endocrine AND Genetics in the past. Both

specialists have since left Children's Boston. I brought with me copies

of the Genetics reports. We didn't receive anything from the Endocrine

- he stopped seeing at age 1. The Endocrine asked some simple

questions. I told him I would like to know what, if anything, I could

do for 's growth. He was unaware of the tests took in

February and I informed him that we were still waiting for results. I

only knew of the RSS test, although they took 10 vials of blood that

day. He said RSS tests don't always come back or very delayed.

Then Dr. Holm came in. She and the Endocrine reviewed the test results

he had taken in February. Why we weren't informed that the results were

in, I haven't a clue! I actually called and ASKED them for the results.

I could rant for a while, but then this message might contain profanity,

so I will leave it at that.

There were two things amiss with the results. Both were very

unexpected. Oh, by the way, the RSS came back negative, but as you all

know, a negative result isn't conclusive. Dr. Holm feels the same way I

do.... shows some signs, not all the " typical " ones. We will

never know for certain until there is a test that is more accurate than

the 10% now.

Bone age test:

At 4 1/2 years old, it was reported his bone age was that of a 6 year

old. Dr. Holm said that the tests are not an exact science and the

results might have been misinterpreted. She is going to pull the xray

and look for herself. If it really is at the 6 year level, GHT is

definitely out of the question - which is probably is anyway after

speaking with her.

Thyroid:

His thyroid readings were off and more tests needed to be performed. It

required two vials of blood and was such a brave boy. Not one

cry, not one tear! Dr. Holm said that IF has hyperthyroidism, his

potential growth will be reduced, but hyperthyroidism is treatable. (or

is it " hypo " ... I don't know)

I will cross that bridge when and if we ever get to it.

The best news of all - 's growth readings are on the " delayed

growth curve " . This is promising. His estimated adult size is 5'4 " .

We are very pleased to hear this.

We expect to have the results of the thyroid tests in a week.

Sue R.

_____

<http://click./1/7748/1/_/229381/_/966602791/>

<http://adimg./img/7748/1/_/229381/_/966602791/blackgreenflash_ne

w2.gif>

_____