Re: Questions about advancing bone age & first Dr. H visits

[Guest guest]

- What a coincidence. I can't write a lot now cuz I have some

deadlines I am trying to make. But we flew back from Dr. H's late

last night, arriving LA at midnight. We sadly got the SAME news as

you. 's height velocity on the slightly increased GH dosage

jumped back up again, and she has now reached her target

percentile!!!! Yahoo!!!! 75th percentile. At 8.99 yrs old

(birthday is 4 days), she is 136.5cm or 54.5 inches.

Sadly, her bone age is now PAST her chronological age, rapidly

surpassing it within 2 brief years. She also has no overt signs of

adrenarche (although she has gotten some pimples and oily hair

suddenly in the last 6 months). The computer program calculated out

that we are now losing the very height growth that we used growth

hormone for!!! Her predicted height is now at the 50th percentile

based on her bone age. And Dr. H says that that will continue to

drop because her bone age will continue to accelerate.... We may

end up losing all of the gain we made....

She wrote a prescription for the aromitase inhibitor Arimidex

(spelling?). I know some of your children are on it. I had done

some research for families prior, and I know that the FDA is

currently studying it, and there are several European studies

already complete. We are still in shock, and need to do some

research ourselves before making a decision.

Re seeing her in NY. It is hard because she sits and types into the

computer. But I also realized that our visit lasted about 90

minutes!!!! So in that sense, we did get probably more out of it

than we would seeing her at the convention. We could not have had

the discussions we had about her bone age while in NY.

Has his bone ages been read by the SAME person each year? Dr. H was

saying that is one of the critical things, because most people read

xrays consistently. If you gave Dr. H a bone age that she had read

2 years ago, and asked her to read it again, chances are that she

would read it almost entirely the same. But if another person read

it, she and that person may be slightly different. So what is

important when comparing bone ages from year to year is that

consistency -- same person reading. I thought that was an

interesting point.

I had no idea until this visit, while watching her read L's bone

age, that you are literally comparing about 20 different points on

the x-ray to points in a book, and reading off numbers. She had me

enter those into a computer program, which then calculated the total

bone age off of those 20 measurements.... So " evaluator

discrepancy " can definitely exist....

>

> Hi,

>

> I haven't been reading the messages in ages because I've been too

> busy, but now need some help from all of you. Colin is 4 years and

1

> month. He had his annual endocrinologist visit today. The good

news

> is that his height is between 40-50%ile without GHT. His weight

for

> height is around 15% and weight 25%. The bad news is that his bone

> age is starting to advance. Some markers were around 4-1/2 years

and

> others as high as 6 years. In the past he hasn't had a bone age

> delay, but he has been on the growth curve since age 2.

>

> SO, the dr. throroughly checked him for signs of puberty and found

> none - testicles normal, no odor, no hairs, no signs of IR. She is

> ordering some blood work - DHEA, glucose and insulin to be drawn

and

> then wants to talk.

>

> This is all making me very nervous. Though she said it is normal

for

> a child at 4 to go into early adrenarche. But the advance in bone

> age scares me. He is doing so well and I hate to see us lose all

his

> height by going into puberty early. Does it sound like she is

doing

> everything she should be doing? If he were a Dr. H patient what

> would she be doing right now? Is this where he would possibly

start

> Armidex?

>

> We have seen Dr. H in Chicago the past 2 years and I was thinking

of

> visiting her in NY this year instead, but I want to make sure we

> will get our money's worth, so to speak, since we are traveling

from

> Oregon. How long are new patient visits? Would she put together a

> short term plan for us? I talked to Salem and she said

that

> now a good portion of the visit is spent watching her type in the

> computer. I would hate to travel that far and not get much benefit

> out of the visit. Any thoughts are appreciated. I would love to

hear

> from others who have had recent new Dr. H visits at her new

> hospital. How long in advance do you need to book the appt.?

>

> Thank you,

>

>

> Colin (RSS, g-tube) and Hayden - 4 year old twins

> Grant - 1