Re: Adrenarche and bone age

[Guest guest]

I think that you should get another opinion from a pediatric

endocrinologist who has been involved with one of the SGA studies --

meaning they have a lot of experience with SGA kids. If you want a

list, let me know. Dr. Mitch Geffner was one of the leads, and he

is now at Children's Hospital LA. I will try emailing Mitch and

Stanhope the question in general about arimitase

inhibitors. I do have two studies in hand where they did find them

successful - however, I do not have a copy of this NIH study your

doctor referred to. I have to investigate and will try and get

backt you all.

Good thing we are all going to sit in a room at next summer's

convention and discuss this to death!!!!

>

> We took to see his endocrinologist last week. At age 9

yrs, 9

> months, he is now 49 " tall, and he weighs 47 lbs. He's just above

> the 3rd percentile for height, but way below for weight, although

> he's recently started to eat better and put on some weight. His

> growth rate is about 3 " /yr, slightly above average for his age, but

> at the conference Dr. H. said that was low for the level of gH

that

> he's on. Overall, though, we're pretty happy with his growth, and

> his Dr. increased his gH dosage slightly, to 1 mg/day.

>

> We're more concerned about his symptoms of adrenarche. Dr. H.

> said that Josh was in " early aggressive adrenarche " , that his bone

> age should be followed every 6 months, and if it advances, we

> should consider an aromatase inhibitor. We discussed this with

> Josh's Dr. He's more conservative in using meds than Dr. H. It

took

> us over a year to convince him to start Josh on gH (2 years ago).

> He said that he's reluctant to use aromatase inhibitors; an NIH

> 5-year study showed that, because they block estrogen, they led

> to osteoporosis in many kids. He also said that bone age

> measurements are very unreliable; a study they did at Stanford

> showed they were only accurate to plus or minus 18 months, so he

> doesn't see the point in taking them every 6 months. He will

> continue to do them once a year for , but take blood hormone

> measurements every 4 months, as they are more reliable indicators

of

> adrenarche and early puberty. If there are any ominous changes,

then

> he would re- consider the aromatase inhibitors. (For what it's

worth,

> Josh's most recent bone age was 108 months at a chronological age

> of 116 months.)

>

> Dr. H. was also concerned about insulin resistance in , since

> his growth rate was low for his IGF-1 level, and she thought that

high

> insulin might be driving his adrenarche. She recommended that

Josh

> should have an OGTT test, but his doctor doesn't believe in those

either.

> He said that they too are notoriously unreliable and tricky to

interpret,

> and quite a lot to put a kid through; a fasting glucose test is a

> sufficient test for insulin resistance. I'd love to put him and

Dr. H. in

> the same room and hear them argue about this, because she was

quite

> adamant that a fasting glucose test wasn't enough, and Josh

needed to

> have an OGTT.

>

> Anyway, I guess I need to read up some more on these matters, to

try

> to make sense of the conflicting advice we're getting from these

two

> doctors. Anyone have any thoughts or suggestions?

>

> - Joe

[Guest guest]

Joe,

We have similar situations with our kids. My son will be 11 on Friday, but his

bone age is

advanced. The one he had on 7/30/04 was read at 12.5 years. My son is not

growing

well on growth hormone though. He is 50.75 " tall & 48 lbs. My son has been in

adrenarche sine he was years old, but I didn't know what was wrong with him at

the time.

Dr. H shed some light for us when she looked at all of his old lab work & bone

age studies.

It is important to check the bone age every 6 months, because it could

drastically advance

in 1 year. When was 3 years, 3 months old, his bone age was read to be

3 years

(he was behind). At his next bone age at age 4 years, 4 months, it was read at

5 years. It

advanced 2 years in 1 year. From that point on, it kept advancing and we were

still getting

them done only once per year. We have been getting them done every 6 months for

the

past year and a half now and he is on an aromatase inhibitor. I will tell you

it was a long

time before our local endo agreed to prescribe the aromatose inhibitor, but he

did agree

with the bone age being done every 6 months. If you wait a year and have rapid

advancement, you are losing time to help Josh grow.

We, too, have had arguments back and forth with the insulin resistance issue,

and

just ad his 2nd OGTT test last Thursday (results not back yet). His preliminary

blood

sugars were fine, but I am waiting for results on the insulin levels. By the

way, we did this

as a 5 hour test, instead of the usual 3 hours.

As far as the blood tests being reliable indicators of puberty and adrenarche, I

am not sure

whether this is entirely true. has had high testosterone levels for

many years, but

according to Dr. H was not in true puberty. Now, he is, and he is also getting

Lupron

injections monthly.

You might want to convince your local endo to give Dr. H a call, preferable

while you are

there!

Kim C.

>

> We took to see his endocrinologist last week. At age 9 yrs, 9

> months, he is now 49 " tall, and he weighs 47 lbs. He's just above

> the 3rd percentile for height, but way below for weight, although

> he's recently started to eat better and put on some weight. His

> growth rate is about 3 " /yr, slightly above average for his age, but

> at the conference Dr. H. said that was low for the level of gH that

> he's on. Overall, though, we're pretty happy with his growth, and

> his Dr. increased his gH dosage slightly, to 1 mg/day.

>

> We're more concerned about his symptoms of adrenarche. Dr. H.

> said that Josh was in " early aggressive adrenarche " , that his bone

> age should be followed every 6 months, and if it advances, we

> should consider an aromatase inhibitor. We discussed this with

> Josh's Dr. He's more conservative in using meds than Dr. H. It took

> us over a year to convince him to start Josh on gH (2 years ago).

> He said that he's reluctant to use aromatase inhibitors; an NIH

> 5-year study showed that, because they block estrogen, they led

> to osteoporosis in many kids. He also said that bone age

> measurements are very unreliable; a study they did at Stanford

> showed they were only accurate to plus or minus 18 months, so he

> doesn't see the point in taking them every 6 months. He will

> continue to do them once a year for , but take blood hormone

> measurements every 4 months, as they are more reliable indicators of

> adrenarche and early puberty. If there are any ominous changes, then

> he would re- consider the aromatase inhibitors. (For what it's worth,

> Josh's most recent bone age was 108 months at a chronological age

> of 116 months.)

>

> Dr. H. was also concerned about insulin resistance in , since

> his growth rate was low for his IGF-1 level, and she thought that high

> insulin might be driving his adrenarche. She recommended that Josh

> should have an OGTT test, but his doctor doesn't believe in those either.

> He said that they too are notoriously unreliable and tricky to interpret,

> and quite a lot to put a kid through; a fasting glucose test is a

> sufficient test for insulin resistance. I'd love to put him and Dr. H. in

> the same room and hear them argue about this, because she was quite

> adamant that a fasting glucose test wasn't enough, and Josh needed to

> have an OGTT.

>

> Anyway, I guess I need to read up some more on these matters, to try

> to make sense of the conflicting advice we're getting from these two

> doctors. Anyone have any thoughts or suggestions?

>

> - Joe

[Guest guest]

,

I'm interested in those articles about aromatase inhibitors. Are they

on the Library List? If so, what are the article id#s so I can order them

from MAGIC. At the conference I asked Dr. Stanhope about aromatase

inhibitors. He said that he doesn't use them, but I'd like to hear more

about his reasons. I looked on the web for info about the NIH study,

but couldn't find anything. I'll ask our doctor for a reference next time

we see him. I did read some articles that seemed to contradict what he

said about the accuracy of bone age measurements, so we'll have to

press him on that too. Maybe you could ask Drs. Geffner and Stanhope

how often they test bone ages, and how accurate they think they are.

Thanks.

- Joe

>

> I think that you should get another opinion from a pediatric

> endocrinologist who has been involved with one of the SGA studies --

> meaning they have a lot of experience with SGA kids. If you want a

> list, let me know. Dr. Mitch Geffner was one of the leads, and he

> is now at Children's Hospital LA. I will try emailing Mitch and

> Stanhope the question in general about arimitase

> inhibitors. I do have two studies in hand where they did find them

> successful - however, I do not have a copy of this NIH study your

> doctor referred to. I have to investigate and will try and get

> backt you all.

>

> Good thing we are all going to sit in a room at next summer's

> convention and discuss this to death!!!!

>

>

>

>

>

[Guest guest]

Kim,

Thanks so much for your long thoughtful reply! One thing great about

this list is hearing from people who are one or two steps ahead of us on

the same path.

Your response has definitely reinforced to me that we need to insist on

more frequent bone age measurements for Josh. We're still not sure though

about the OGTT.

By the way, we gave our endo Dr. H's email and phone number, but he

didn't commit to contacting her. Maybe we'll try giving him a copy of her

conference presentations, if the videos are available before our next

appointment.

- Joe

>

> Joe,

>

> We have similar situations with our kids. My son will be 11 on Friday, but

his bone

age is....

[Guest guest]

The article that I know of is called " Novel Treatment of delayed

male puberty with aromatase inhibitors " by Dunkel and Wickman.

2002. It is ID#H-87.

I have emailed Stanhope about the aromatase inhibitors question but

have not heard back from him.

Re the bone age question. Yee gads, I have about twenty zillion

articles in front of me that all mention bone age in it in some way

or another. There is no way to give you all. Bone age does have

error ranges. In fact, I have read that bone ages in children under

age 2 are really unreliable, since the error standard deviation

could be as much as the child is old.

However, that error range in older kids (let's say 6 yrs and up)

isn't that large (clearly this would vary if you are using some

random radiologist). But major children's hospitals are very adept

at reading bone ages -- bone ages are used for many many different

disorders.

I have also read that consistency is a key, that you should try and

have your child's bone ages done by the same lab year after year

when you can -- they can compare them. And that what often matters

more is the tracking of the bone age, each year. Your child might

be 11 months delayed one year, 11 months again, let's say 9 months,

then 12 months -- none of those are strange or enough apart to worry

someone.

I have read that bone ages should be done once a year, unless the

child begins to show signs of adrenarche and/or puberty. And then

it is recommended that the bone age be done every 6 months, IF you

are worried about maximizing height. Many parents do not choose

growth hormone therapy, and/or have no plans on delaying puberty if

their child entered puberty early or not. In a case like this,

there would be no reason to do a bone age, simply because it

wouldn't matter.

Remember that for RSS/SGA kids, for some reason their " growth

period " during puberty is SHORTER AND FASTER than the normal child.

So the bone maturation suddenly kicks into high gear, and rapidly

accelerates far faster than the chronological age. Tracking the

bone age, if you are trying to determine " how much growing time is

left " is really the only way to make this determination.

Normally the bone age is done of the left wrist/hand. If a child

has limb asymmetry and the smaller side is the left side, it is

recommended that the bone age be done of BOTH wrists/hands, to

determine if there is any difference between the two.

I hope this helps a bit.

> >

> > I think that you should get another opinion from a pediatric

> > endocrinologist who has been involved with one of the SGA

studies --

> > meaning they have a lot of experience with SGA kids. If you

want a

> > list, let me know. Dr. Mitch Geffner was one of the leads, and

he

> > is now at Children's Hospital LA. I will try emailing Mitch and

> > Stanhope the question in general about arimitase

> > inhibitors. I do have two studies in hand where they did find

them

> > successful - however, I do not have a copy of this NIH study

your

> > doctor referred to. I have to investigate and will try and get

> > backt you all.

> >

> > Good thing we are all going to sit in a room at next summer's

> > convention and discuss this to death!!!!

> >

> >

> >

> >

> >