Re: bone age

[Guest guest]

I don't know know much but Hannah's bone age doesn't match her c.age either.

She's been on ght for almost 2 years now. She's only grown 2/8 of an inch within

this last year. I have been told that if used everyday that you are suppose to

it helps, but in my case it's hard because when she is with her Father he

doesn't give it to her instead he wastes it.

sheryl gavrock wrote:anyone, I haven't had chance to

purchase cd from magic, my question is bone age. They are considering doing ght

in October on Dakoda. 5 1/2 bone is 4yrs . weighs 31lbs. Could he reach a

reasonable height w/out ght , he is now on complex carb and starch at night , he

just at times refuses to eat every 2hrs and we explained to endo sh sd fine try

every 3 to 4 hrs . My question is , bone age so close to his c/age ... is there

anyone elses child this close .... I guess i'm just confused abt bone age. I'm

still reading bt getting more confused.

sheryl

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[Guest guest]

Hi Sheryl,

I know Jenn Salem's daughter 's bone age

started to catch up on her and when she comes back

from convention she'll be able to talk to you more

about it. Jodi Zwain's son Max is 17 and his bone age

is 14 so with him and all kids whose bone age is

younger than their chronological age this is great.

It gives you more time to keep growing. My daugther

is 5 1/2 and the end of August we are doing her

first bone age. We have no idea what it is. Dr. H

said she is not RSS but is growth failure. My husband

and I are still uncertain what we are going to do

about gh. Honestly, I would like to have Dr. H track

her for a little longer period before we decide to see

how she is going. Unless of course the bone age shows

something unexpected.

Right now is tracking on a the growth chart to

be about 4'10 " . Her target height in life (if she

didn't have growth failure) would be 5'2 " .

So you want the bone age to be younger than the

chronological age because that gives you more time for

growth. You want to take full advantage of any time

you have to help the kids reach their target final

adult height.

I hope I helped. I'm not as knowledgeable as some of

the others but I just hope I can help someone a

little.

B

5 1/2 and Kelli 3

--- sheryl gavrock wrote:

> anyone, I haven't had chance to purchase cd from

> magic, my question is bone age. They are considering

> doing ght in October on Dakoda. 5 1/2 bone is 4yrs .

> weighs 31lbs. Could he reach a reasonable height

> w/out ght , he is now on complex carb and starch at

> night , he just at times refuses to eat every 2hrs

> and we explained to endo sh sd fine try every 3 to 4

> hrs . My question is , bone age so close to his

> c/age ... is there anyone elses child this close

> .... I guess i'm just confused abt bone age. I'm

> still reading bt getting more confused.

> sheryl

>

>

>

> ---------------------------------

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>

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

Cherie,

Please read up on all the things Pat suggested. It is so important

that you stop the advancement of your son's bone age or those

growth plates will fuse and he will never achieve any catch-up

growth. Dr. H's protocol includes Arimex as an aromatase inhibitor

and the use of Lupron Depot or Zoladex. I don't know much about

Lupron, but Zoladex was what my son used. It is a pellet that is

inserted just under the skin in the abdomen and stops puberty. It's

inserted every 83 days or so, depending on his response to it.

One of the characteristics of RSS is precocious puberty and rapid

advancement of bone age. The goal is to delay this advancement as

long as possible to give time for more growth and to help the child

catch up and even exceed what he was genetically programmed to be.

For example, without gh and the Arimidex and Zoladex, Max would have

been no taller than 4'8 " , as his growth curve was suggesting. With

the intervention, however, he has exceeded 5'4 " and will probably be

5'8 " or so. (We will take anything now - we are so grateful for

what he has now.) His bone age is still delayed by 3 years, but he

is in puberty, so it could catch up at any point. He still takes

Arimidex, so hopefully it is helping to keep that at bay.

If you do not address this with your son, his growth plates are

going to fuse and you will have no hope for addtional height. He

should have a full endocrine work-up and then be given meds to stop

this rapid advancement. It CAN be stopped or at least slowed down,

so don't give up hope. But you have to address it now.

Please check out what Pat suggested, okay?

Jodi Z

[Guest guest]

Cherie - I sure wish you could have been with us at the convention as

we sat through hours of this discussion!!!! Actually, it isn't just

Dr. H that talks of this, but virtually all published literature on

RSS discusses the fact that for RSS children, they have a delayed bone

age that somewhere in early puberty, begins to rapidly advance and

will continue to rapidly advance and end up surpassing the

chronological age.

The end result is that the entire pubertal growth phase is shorter

(meaning less total height gained) and faster (ends at an earlier age)

than the general population. So the RSS child ends up even shorter

than one would normally have predicted based on their prepubertal

growth curve. Sad for our kids.

To determine if the child is in adrenarche (which is typically when

the bone age begins to rapidly advance), a simple blood test that

checked the levels of DHEA would tell your endocrinologist that your

child is in adrenarche (physical signs would be body odor, forehead

pimples, and some peach fuzz/pubic hair).

Unfortunately, the only thing you can do to try and stop this early

adrenarche from occuring (because unfortunately, when a child has

early adrenarche, it can increase the odds of gonadarche/puberty from

also beginning early) is a non-FDA approved use of aromitase

inhibitors, such as Arimidex.

Please review the MAGIC log of articles and recent MAGIC Touch

newsletters for complete information. We have recently added about 5

or 6 new studies on the use of aromitase inhibitors to slow the bone

maturation process -- it is a relatively new treatment and being used

in groups of growth-disorder kids not just RSS kids. MAGIC's library

log will list all of the articles and you can find these at the end

(the more recent ones).

Good luck! Oh, and bone age x-rays should be done every 6 months for

your son now, and should be read by the same person, and preferably

read by the method where the endo reads the 20 or 28 points and enters

those data into a computer program which spits out the bone age (not

the simpler radiologist method).

Salem

> Hi'

> My son is now 7yr 6 mo. We survived the agony of severe

> reflux, feeding tubes and constant virus infections. He is now a

> happy healthy soon to be second grader. He is 48 " and 48 lbs on a

> good day! My new concern is his bone age. It keeps creeping up

with

> each endo apt. and currently is between 8-9 yrs old. We're 6 months

> into braces and expanders with most of his permanant teeth in on

top.

> He has slight pubic hair but no change in testicle or body odor.

Does

> any one know what criteria Dr. H uses regarding bone age and testing

> for andarche (sp?). I just have that mama's feeling that things

> aren't right and any input would be greatly appreciated.

> Cherie

[Guest guest]

,

Thank you so much for your immediate suggestions. I called my endo

today, who of course was out of town for the week, requesting a

script for Dhea. When I didn't hear from his office by noon I called

and begged his ped for the script. She agreed but emphasized I had

to follow up with endo. Had the blood drawn and sent off by 1pm. We

are very rural in western NY and I only hope I told the lab the

correct test requested. Thank God I an an RN and am no longer shy

about advocating for my son. But I am still furious with our endo

for totally ignoring this issue despite my insistance that this was

not " OK " . I dont know why I'm surprized. I do home care nusing and

fight with MD's all the time for my elderly patients. I'm also

frustrated with myself for not doing something sooner. I guess after

those awful early years I was just so thrilled that finally

started eating and growing that I wanted to believe that everything

was alright. I can't thank you enough for your input. Magic and the

Rss group are probably the only reason ever survived till

now! Thanks so much.

Cherie

-- In RSS-Support , " Brock " <magicrss@m...>

wrote:

> Cherie - I sure wish you could have been with us at the convention

as

> we sat through hours of this discussion!!!! Actually, it isn't

just

> Dr. H that talks of this, but virtually all published literature on

> RSS discusses the fact that for RSS children, they have a delayed

bone

> age that somewhere in early puberty, begins to rapidly advance and

> will continue to rapidly advance and end up surpassing the

> chronological age.

>

> The end result is that the entire pubertal growth phase is shorter

> (meaning less total height gained) and faster (ends at an earlier

age)

> than the general population. So the RSS child ends up even shorter

> than one would normally have predicted based on their prepubertal

> growth curve. Sad for our kids.

>

> To determine if the child is in adrenarche (which is typically when

> the bone age begins to rapidly advance), a simple blood test that

> checked the levels of DHEA would tell your endocrinologist that

your

> child is in adrenarche (physical signs would be body odor, forehead

> pimples, and some peach fuzz/pubic hair).

>

> Unfortunately, the only thing you can do to try and stop this early

> adrenarche from occuring (because unfortunately, when a child has

> early adrenarche, it can increase the odds of gonadarche/puberty

from

> also beginning early) is a non-FDA approved use of aromitase

> inhibitors, such as Arimidex.

>

> Please review the MAGIC log of articles and recent MAGIC Touch

> newsletters for complete information. We have recently added about

5

> or 6 new studies on the use of aromitase inhibitors to slow the

bone

> maturation process -- it is a relatively new treatment and being

used

> in groups of growth-disorder kids not just RSS kids. MAGIC's

library

> log will list all of the articles and you can find these at the end

> (the more recent ones).

>

> Good luck! Oh, and bone age x-rays should be done every 6 months

for

> your son now, and should be read by the same person, and preferably

> read by the method where the endo reads the 20 or 28 points and

enters

> those data into a computer program which spits out the bone age

(not

> the simpler radiologist method).

>

> Salem

>

>

>

>

> > Hi'

> > My son is now 7yr 6 mo. We survived the agony of severe

> > reflux, feeding tubes and constant virus infections. He is now a

> > happy healthy soon to be second grader. He is 48 " and 48 lbs on

a

> > good day! My new concern is his bone age. It keeps creeping up

> with

> > each endo apt. and currently is between 8-9 yrs old. We're 6

months

> > into braces and expanders with most of his permanant teeth in on

> top.

> > He has slight pubic hair but no change in testicle or body odor.

> Does

> > any one know what criteria Dr. H uses regarding bone age and

testing

> > for andarche (sp?). I just have that mama's feeling that things

> > aren't right and any input would be greatly appreciated.

> > Cherie

[Guest guest]

I sure hope that I got the blood test right! Did they say that

DHEA test was what they would consider for adrenarche? Jenn

> > > Hi'

> > > My son is now 7yr 6 mo. We survived the agony of

severe

> > > reflux, feeding tubes and constant virus infections. He is

now a

> > > happy healthy soon to be second grader. He is 48 " and 48 lbs

on

> a

> > > good day! My new concern is his bone age. It keeps creeping

up

> > with

> > > each endo apt. and currently is between 8-9 yrs old. We're 6

> months

> > > into braces and expanders with most of his permanant teeth in

on

> > top.

> > > He has slight pubic hair but no change in testicle or body

odor.

> > Does

> > > any one know what criteria Dr. H uses regarding bone age and

> testing

> > > for andarche (sp?). I just have that mama's feeling that

things

> > > aren't right and any input would be greatly appreciated.

> > > Cherie

[Guest guest]

Cherie,

I would like to add that you should have estrogen levels checked as

well as DHEA. My son, Jonathon, now 10 does not have elevated DHEA

levels but does have increased Estrogen levels. His bone age has also

begun to rapidly advance and Dr. H has prescribed Arimidex for him.

She thinks this will keep his bone age from advancing prematurely.

Pattie Warren

> > Hi'

> > My son is now 7yr 6 mo. We survived the agony of severe

> > reflux, feeding tubes and constant virus infections. He is now a

> > happy healthy soon to be second grader. He is 48 " and 48 lbs on a

> > good day! My new concern is his bone age. It keeps creeping up

> with

> > each endo apt. and currently is between 8-9 yrs old. We're 6 months

> > into braces and expanders with most of his permanant teeth in on

> top.

> > He has slight pubic hair but no change in testicle or body odor.

> Does

> > any one know what criteria Dr. H uses regarding bone age and testing

> > for andarche (sp?). I just have that mama's feeling that things

> > aren't right and any input would be greatly appreciated.

> > Cherie