Re: Dr. H Reply re Premature Adrenarche

[Guest guest]

Pat,

Oh, I didn't fully grab hold of how experimental it is... I wonder how

experimental the drugs' other side effects are?

Inga

At 03:00 PM 12/28/2002 -0500, you wrote:

>Hi Inga,

> As I read it, she's saying that to adrenarche does not actually need to

>be treated. What you want to do is to prevent androgens from turning into

>estrogen. Estrogen will cause a child to go into premature puberty?

> You don't need to treat adrenarche unless you start seeing rapidly

>advancing bone age. I take it, as she is, also, cautioning us about letting

>just any doctor administer treatment. The treatment is experimental, and

>could be used wrongly by inexperienced professionals.

> Pat

>

>

>

>

>

>

>

[Guest guest]

Pat,

Oh, I didn't fully grab hold of how experimental it is... I wonder how

experimental the drugs' other side effects are?

Inga

At 03:00 PM 12/28/2002 -0500, you wrote:

>Hi Inga,

> As I read it, she's saying that to adrenarche does not actually need to

>be treated. What you want to do is to prevent androgens from turning into

>estrogen. Estrogen will cause a child to go into premature puberty?

> You don't need to treat adrenarche unless you start seeing rapidly

>advancing bone age. I take it, as she is, also, cautioning us about letting

>just any doctor administer treatment. The treatment is experimental, and

>could be used wrongly by inexperienced professionals.

> Pat

>

>

>

>

>

>

>

[Guest guest]

That part of Dr. H.'s reply was a surprise to me, too. (PLEASE no

one share this with Dr. H. I'm in enough trouble already with her

for being too verbal on this listserve!!!)

I knew that estrogen is responsible for the advancing bone age. I

knew that we had to stop Max from producing so much estrogen so that

his bone age would no longer advance, but I did not know that using

Arimidex to do so was " experimental. " While we have seen no side

effects other than a period of upset stomach until he adjusted to

it, and a sudden weight gain (don't know if that is part of it),

everything else seems to be okay. Max is due for some bloodwork and

another bone age in February, so we will see what turns up then.

I also know that having one of the older RSS kids can be lonely and

we are always one of the first to go through stuff, but sometimes it

seems like my child is the guinea pig without our even realizing

it. At least he is healthy and happy. Now if he would only

grow.... That is the major issue here. He is not growing. I'm

hoping that his recent weight gain and the fact that he is sleeping

a lot is an indication that he is about to grow. I'm keeping my

fingers crossed!

Again do NOT share this info with Dr. H. She thinks I am telling

too much on the listserve, things are getting back to her in a mixed

up way and she keeps emailing me. I don't want to compromise my

relationship with her, and I don't want to have to censor what I

post here. If I know that confidences are kept, it makes it easier

for me to give out info and to share our experiences. Thanks.

Jodi

[Guest guest]

I asked two other prominent endocrinologists about the use of

arimidex and both said it was " experimental " . However, both said

that the use of it in pediatric cases for stopping the conversion of

androgens into estrogen or whatever it is -- that this IS being

studied by more than one study in the U.S. The word " experimental "

simply means that the F.D.A. has not yet approved the use of arimidex

for this specific problem in pediatric cases (it has been approved

for adult women with breast cancer who are trying to halt the

estrogen stuff....)

Again, though, from what I read in Dr. H's reply, this drug is not

used to stop premature adrenarche (as even young children might show

early signs of pubic hair for a variety of reasons), but used once

these signs occur AND the bone age begins to advance as well.

> That part of Dr. H.'s reply was a surprise to me, too. (PLEASE no

> one share this with Dr. H. I'm in enough trouble already with her

> for being too verbal on this listserve!!!)

>

> I knew that estrogen is responsible for the advancing bone age. I

> knew that we had to stop Max from producing so much estrogen so

that

> his bone age would no longer advance, but I did not know that using

> Arimidex to do so was " experimental. " While we have seen no side

> effects other than a period of upset stomach until he adjusted to

> it, and a sudden weight gain (don't know if that is part of it),

> everything else seems to be okay. Max is due for some bloodwork

and

> another bone age in February, so we will see what turns up then.

>

> I also know that having one of the older RSS kids can be lonely and

> we are always one of the first to go through stuff, but sometimes

it

> seems like my child is the guinea pig without our even realizing

> it. At least he is healthy and happy. Now if he would only

> grow.... That is the major issue here. He is not growing. I'm

> hoping that his recent weight gain and the fact that he is sleeping

> a lot is an indication that he is about to grow. I'm keeping my

> fingers crossed!

>

> Again do NOT share this info with Dr. H. She thinks I am telling

> too much on the listserve, things are getting back to her in a

mixed

> up way and she keeps emailing me. I don't want to compromise my

> relationship with her, and I don't want to have to censor what I

> post here. If I know that confidences are kept, it makes it easier

> for me to give out info and to share our experiences. Thanks.

>

> Jodi

[Guest guest]

,

Thanks for taking the time to forward this info, in the midst of everything

that's

going on with . We were away for Christmas and " offline " , and I was

sorry to read when I came back about the complications from her surgery, her

lost weight, lack of appetite, etc. Our family will be praying for her speedy

recovery!

- Joe

[Guest guest]

,

Well I have to know how you are working on muscle building. Is

Janelle on GH-- is.

> > Hello Listserve -

> >

> > I received a reply back from Dr. Madeleine Harbison in response to

> the email I

> > sent her where I consolidated Joe Blau's questions on premature

> adrenarche

> > with others that came up on the listserve. Here is her reply to

> each of the

> > questions. Salem, MAGIC RSS Division Consultant

> > ***************

> >

> > a) What exactly is the difference between adrenarche and puberty?

> >

> > Dr. H Response: Adrenarche is when the adrenal gland switched

from

> making

> > glucocortcoids and mineralocorticoids to glucocortcoids,

> mineralocorticoids

> > and androgens [male hormones].

> >

> > Puberty is when the brain switches from make LHRH in a linear

> pattern to a

> > pulsitile pattern. This changes the response of the pituitary

from

> making

> > more FSH than LH to more LH than FSH. This starts the gonads to

> making sex

> > hormones.

> >

> > Does premature andrenarche imply that you will likely have

> premature

> > puberty?

> >

> > Dr. H Response: Yes, it sometimes does.

> >

> > c) How long after andrenarche does puberty typically begin?

> >

> > Dr. H Response: We do not know what starts adrenarche and we do

> not know why

> > adrenarche initiates puberty in some children and not in others.

> It ssems to

> > do so in SGA children for sure. It is hard to know when puberty

> will follow

> > after adrenarche starts but the more fat the child has the more

> likely it is

> > to start because androgens are converted to estrogens in fat.

> Estrogen is

> > really what controls puberty in both males and females.

> >

> > I believe that adrenarche starts when insulin rises. Insulin

rises

> earlier in

> > SGA children than it does in normal children because they have

> insulin

> > resistance.

> >

> > d) What is your recommended treatment for premature adrenarche?

> >

> > Dr. H Response: There is no good way to treat premature

adrenarche

> nor is

> > there a need to treat it because androgens do not cause the

> problem. Estrogen

> > causes the problem. If the bone age begins to advance rapidly,

> giving

> > Arimidex to prevent conversion of androgens to estrogen is the

best

> > theoretical therapy. This is experimental therapy and not

> something that most

> > doctors will or should use.

> >

> > e) In addition to drugs to forestall puberty, how often should

bone

> age and

> > hormone levels be checked and which hormones are the most

important

> to watch?

> >

> > Dr. H Response: Meds that suppress puberty do not help with

> premature

> > adrenarche. When children are young, I do a BA yearly along with

> > testosterone, DHEA, androstenedione, E1 and E2. When they get

> older, show any

> > signs of sex hormone secretion, have an advancing BA or have a

> sudden growth

> > spurt, I do these tests every 6 mo.

> >

> > f) With regards to a specific family, what happens if you have a

> bone age that

> > is suddenly rapidly advancing, but NO other signs of puberty,

> > and the blood test hormone levels say that the child is not in

> puberty yet.

> > The child's bone age has always been 12-18 months delayed, and

this

> last time

> > when she is just turning 8 years old, her bone age was only 6

> months delayed.

> > Could it be that the bone age was misread? Or can you she be

> in " early

> > puberty " with no visible signs yet?

> >

> > Dr. H Response: This is likely the start of adrenarche. Young

> children are

> > very sensitive to very small amounts, BELOW MEASURABLE, amounts of

> estrogen.

> > Like the period of infancy, this is the period of RSS-SGA

> children's therapy

> > that requires experience.

>

>

>

[Guest guest]

Hi ,

Thank you so much for your information. I am rather new to all of this

and finding the listserv is the best support for me.

My daughter ita, just turned 6 and she is 95% for weight vs.

height.

Jua was an SGA (small for gestiional age...saw the ??!!! and IUGR

weighing only 2.0 lbs at 31 weeks (talk about a pea!!). We just took

her to the endo yesterday. ita was between the 3rd and 5th% for

the first 4 years then WAMMO!!...growth spurt betw jan. 21, 02 to

sept. 13, 02-- 4 " , huge weight gain, and a bone age of 8yrs, 10 months

and adrenarche. (Don't have to look for it.... it is here :-(

We have been asked to consider LUPRON by February 3. You did not say

if your child

is on treatment.... so here is a question for all.....

Is anyone currently using LUPRON and does it work for the SGA and IUGR

child????????

Also, any tips on getting ita down to 50% weight for height would

be great to hear. We exersise 3x per week but all that does is keep

her from gaining. She is and has been at 60lbs but has bouncbbed up to

62.5, Jua went from 10% to just under 50% with the spurt.

Also is the weight my fault? I have been surfing the net and this

seems a big question in the medical community regarding what brings on

adrenarcheb.

I need to understand this. Yesterday the endo began speaking about

the weight but drifted off to the adrenarche so I was not clear on

what she was saying.

Thanks,

AvaMarie

> > Hello Listserve -

> >

> > I received a reply back from Dr. Madeleine Harbison in response to

> the email I

> > sent her where I consolidated Joe Blau's questions on premature

> adrenarche

> > with others that came up on the listserve. Here is her reply to

> each of the

> > questions. Salem, MAGIC RSS Division Consultant

> > ***************

> >

> > a) What exactly is the difference between adrenarche and puberty?

> >

> > Dr. H Response: Adrenarche is when the adrenal gland switched

from

> making

> > glucocortcoids and mineralocorticoids to glucocortcoids,

> mineralocorticoids

> > and androgens [male hormones].

> >

> > Puberty is when the brain switches from make LHRH in a linear

> pattern to a

> > pulsitile pattern. This changes the response of the pituitary

from

> making

> > more FSH than LH to more LH than FSH. This starts the gonads to

> making sex

> > hormones.

> >

> > Does premature andrenarche imply that you will likely have

> premature

> > puberty?

> >

> > Dr. H Response: Yes, it sometimes does.

> >

> > c) How long after andrenarche does puberty typically begin?

> >

> > Dr. H Response: We do not know what starts adrenarche and we do

> not know why

> > adrenarche initiates puberty in some children and not in others.

> It ssems to

> > do so in SGA children for sure. It is hard to know when puberty

> will follow

> > after adrenarche starts but the more fat the child has the more

> likely it is

> > to start because androgens are converted to estrogens in fat.

> Estrogen is

> > really what controls puberty in both males and females.

> >

> > I believe that adrenarche starts when insulin rises. Insulin

rises

> earlier in

> > SGA children than it does in normal children because they have

> insulin

> > resistance.

> >

> > d) What is your recommended treatment for premature adrenarche?

> >

> > Dr. H Response: There is no good way to treat premature

adrenarche

> nor is

> > there a need to treat it because androgens do not cause the

> problem. Estrogen

> > causes the problem. If the bone age begins to advance rapidly,

> giving

> > Arimidex to prevent conversion of androgens to estrogen is the

best

> > theoretical therapy. This is experimental therapy and not

> something that most

> > doctors will or should use.

> >

> > e) In addition to drugs to forestall puberty, how often should

bone

> age and

> > hormone levels be checked and which hormones are the most

important

> to watch?

> >

> > Dr. H Response: Meds that suppress puberty do not help with

> premature

> > adrenarche. When children are young, I do a BA yearly along with

> > testosterone, DHEA, androstenedione, E1 and E2. When they get

> older, show any

> > signs of sex hormone secretion, have an advancing BA or have a

> sudden growth

> > spurt, I do these tests every 6 mo.

> >

> > f) With regards to a specific family, what happens if you have a

> bone age that

> > is suddenly rapidly advancing, but NO other signs of puberty,

> > and the blood test hormone levels say that the child is not in

> puberty yet.

> > The child's bone age has always been 12-18 months delayed, and

this

> last time

> > when she is just turning 8 years old, her bone age was only 6

> months delayed.

> > Could it be that the bone age was misread? Or can you she be

> in " early

> > puberty " with no visible signs yet?

> >

> > Dr. H Response: This is likely the start of adrenarche. Young

> children are

> > very sensitive to very small amounts, BELOW MEASURABLE, amounts of

> estrogen.

> > Like the period of infancy, this is the period of RSS-SGA

> children's therapy

> > that requires experience.

>

>

>

[Guest guest]

,

I reread my message to you from yesterday and all I can say is that

I've been really stressed this week, so I apologize for not making

much sense in what I asked.

I guess what I'd really like to find out is whether there are any

foods or diets that you try to use to reduce fat and build muscle?

Thanks.

> > > Hello Listserve -

> > >

> > > I received a reply back from Dr. Madeleine Harbison in response

to

> > the email I

> > > sent her where I consolidated Joe Blau's questions on premature

> > adrenarche

> > > with others that came up on the listserve. Here is her reply to

> > each of the

> > > questions. Salem, MAGIC RSS Division Consultant

> > > ***************

> > >

> > > a) What exactly is the difference between adrenarche and

puberty?

> > >

> > > Dr. H Response: Adrenarche is when the adrenal gland switched

> from

> > making

> > > glucocortcoids and mineralocorticoids to glucocortcoids,

> > mineralocorticoids

> > > and androgens [male hormones].

> > >

> > > Puberty is when the brain switches from make LHRH in a linear

> > pattern to a

> > > pulsitile pattern. This changes the response of the pituitary

> from

> > making

> > > more FSH than LH to more LH than FSH. This starts the gonads to

> > making sex

> > > hormones.

> > >

> > > Does premature andrenarche imply that you will likely have

> > premature

> > > puberty?

> > >

> > > Dr. H Response: Yes, it sometimes does.

> > >

> > > c) How long after andrenarche does puberty typically begin?

> > >

> > > Dr. H Response: We do not know what starts adrenarche and we do

> > not know why

> > > adrenarche initiates puberty in some children and not in others.

> > It ssems to

> > > do so in SGA children for sure. It is hard to know when puberty

> > will follow

> > > after adrenarche starts but the more fat the child has the more

> > likely it is

> > > to start because androgens are converted to estrogens in fat.

> > Estrogen is

> > > really what controls puberty in both males and females.

> > >

> > > I believe that adrenarche starts when insulin rises. Insulin

> rises

> > earlier in

> > > SGA children than it does in normal children because they have

> > insulin

> > > resistance.

> > >

> > > d) What is your recommended treatment for premature adrenarche?

> > >

> > > Dr. H Response: There is no good way to treat premature

> adrenarche

> > nor is

> > > there a need to treat it because androgens do not cause the

> > problem. Estrogen

> > > causes the problem. If the bone age begins to advance rapidly,

> > giving

> > > Arimidex to prevent conversion of androgens to estrogen is the

> best

> > > theoretical therapy. This is experimental therapy and not

> > something that most

> > > doctors will or should use.

> > >

> > > e) In addition to drugs to forestall puberty, how often should

> bone

> > age and

> > > hormone levels be checked and which hormones are the most

> important

> > to watch?

> > >

> > > Dr. H Response: Meds that suppress puberty do not help with

> > premature

> > > adrenarche. When children are young, I do a BA yearly along

with

> > > testosterone, DHEA, androstenedione, E1 and E2. When they get

> > older, show any

> > > signs of sex hormone secretion, have an advancing BA or have a

> > sudden growth

> > > spurt, I do these tests every 6 mo.

> > >

> > > f) With regards to a specific family, what happens if you have a

> > bone age that

> > > is suddenly rapidly advancing, but NO other signs of puberty,

> > > and the blood test hormone levels say that the child is not in

> > puberty yet.

> > > The child's bone age has always been 12-18 months delayed, and

> this

> > last time

> > > when she is just turning 8 years old, her bone age was only 6

> > months delayed.

> > > Could it be that the bone age was misread? Or can you she be

> > in " early

> > > puberty " with no visible signs yet?

> > >

> > > Dr. H Response: This is likely the start of adrenarche. Young

> > children are

> > > very sensitive to very small amounts, BELOW MEASURABLE, amounts

of

> > estrogen.

> > > Like the period of infancy, this is the period of RSS-SGA

> > children's therapy

> > > that requires experience.

> >

> >

> >

[Guest guest]

,

According to my recent conversation with Dr. H., the way to build up

muscle is to exercise and cut back on fat intake. Kids do need fat,

however, so you cannot eliminate it altogether.

I am trying to keep Max on a simple plan. I got it from reading

about diabetes and from Weight Watchers. Picture a round plate:

one quarter of it should be whole grains, pasta, rice or bread; one

quarter should be protein and half should be vegetables. There

should be at least 3 servings of dairy/day (hard for us because Max

is allergic to milk - we use rice milk, but it's higher in

calories). There should be at least 5 servings of

fruit/veggies/day, too. Veggies are good because they have fewer

calories. Snacks are okay - a couple of cookies or baked chips or

granola bar.... Just try to limit them. Actually, Max stands a

better chance of losing weight if he eats every 3 hours because it

keeps his metabolism going. And he does not get the hunger pangs

that make him eat more at a meal. Of course, like any teenager, he

tries to sneak in a few extra things, but I make sure that his

dinners, at least, are a little less caloric to make up for what he

tries to sneak by me.

I guess things are working for him. He has not gained any weight in

three weeks and I think he has grown. That is what we want - little

or NO weight gain and some growth.

The only time I don't have any control over what he eats is at

school lunchtime. He likes to buy lunch, but he's a veggie fan, so

I see him eating tomatoes and cucumbers when I have lunch duty.

I think we are doing okay for now. I don't want him to obsess over

this like he does everything else. I'm trying to teach him that he

can eat what he likes, just less. For example, in the morning when

we stop for coffee for me, he likes to get a cranberry muffin. Now

I have them cut it in half and he eats only half a muffin.

It's a tough battle. I wonder sometimes how much the Arimidex has

to do with it, too. After we started that med, he started to gain

weight. I should ask Dr. H. about that.

Jodi

[Guest guest]

Hi AvaMarie,

It might be worth looking into the precocious puberty division of

MAGIC. Godschalk (sp?) is the division leader. I also know

that they have a listserve which has helped one of my friends

tremendously. However, I'm not sure how similar the precocious

puberty brought on by RSS is to the precocious puberty that these

other children have.

I've talked to my friend a lot about her daughter, and I'd say that

the weight gain is not your fault!!! It seems to be brought on quite

quickly by the condition. My friend does have to try to help her

daughter control her appetite and maintain her weight, but it is

difficult. I think they're trying to keep her weight the same as she

grows taller so that her weight-to-height ratio comes down again.

(in New Zealand)

[Guest guest]

Hi AvaMarie,

It might be worth looking into the precocious puberty division of

MAGIC. Godschalk (sp?) is the division leader. I also know

that they have a listserve which has helped one of my friends

tremendously. However, I'm not sure how similar the precocious

puberty brought on by RSS is to the precocious puberty that these

other children have.

I've talked to my friend a lot about her daughter, and I'd say that

the weight gain is not your fault!!! It seems to be brought on quite

quickly by the condition. My friend does have to try to help her

daughter control her appetite and maintain her weight, but it is

difficult. I think they're trying to keep her weight the same as she

grows taller so that her weight-to-height ratio comes down again.

(in New Zealand)