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

[Guest guest]

Hi ,

I was surprised to read that Colin only goes to the endocrinologist once a year

having RSS.

Although he seems to be growing well, I think he should be monitored more

frequently

than once a year, but that is just my opinion.

It is not normal for a 4 year old child to go into early adrenarche. My son,

,

started this when he was 3.5 years old, but I didn't know it was adrenarche at

the time. I

also didn't have the RSS diagnosis until he was 9.75 years old. Depsite the

fact that I took

him to every doctor possible on a routine basis, nobody ever seemed to be

worried about

these issues except me. His bone age was initally delayed, but then at about 4

years old,

it started to advance rapidly. I thought he was going into puberty, having

never heard of

adrenarche at this time, but other than having high testosterone levels off and

on, the

LHRH test did not confirm puberty.

From your description, it doesn't sound like Colin has all the symptoms my son

did, which

is a good thing. However, if his endocrinologist suspects he is entering

adrenarche, in

addition to the test she ordered, I think there is a test called an adrenal

stimulation test

(not 100% sure) which stimulates the kidneys to see if he is truly in

adrenarche. Even if no

tests confirm adrenarche or puberty, bone age advancement in a RSS kid is

detrimental, so

you need to investigate why this is happening further.

It is also possible that the bone age was read incorrectly. We have had to get

second

opinions for a few of our bone age readings. Ideally, every bone age should be

read by

the same radiologist. Your endo should be able to give an independent reading

as well. If

she can't do this, then I recommend you see another endocrinologist. Dr. H

would surely

be able to give you an accurate reading of the bone ages.

You asked about what Dr. H would do at this point. If she determined he was in

adrenarche, she would start him on an aromatase inhibitor such as Arimidex or

Aromasin.

My son is on Aromasin, which I believe is stronger than Arimidex. If there was

suspicion

for puberty, she would order an LHRH test or Lupron stimulation test. Then, if

this test

confirmed puberty, she would put him on Lupron Depot or Zoladex. In addition,

if he was

in adrenarche or puberty, he would need to have bone ages done every 6 months

instead

of yearly to keep a close eye on them.

If you are still concerned after the local endo runs all the tests, I would

recommend a visit

to Dr. H. We just saw her last week in NY, and I can empathize about the

expense it takes

to get there, as I live in South Florida. We have seen her for the past 2 years

at the

convention and this was my second trip to her office in NY. I think it usually

takes about 3

months to get an appointment with her, and she does spend a lot of time with her

patients. You will wait awhile in the waiting room to see her, and I think she

allots an hour

to each patient (don't quote me on that), but it may run longer depending on the

severity

of your child's problems. My son is one of the more severe RSS children, and

she was with

us over 2 hours the first time & 1 hour and 45 minutes last week. Hope this

information

helped!

Kim C.

> 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