RE: Puberty Delay: What does it mean?

August 2, 2000

OK Katy,

I think you should quit your present job and go into medical research.

Ken M

Puberty Delay: What does it mean?

Hi..

Does anyone know if there are any adverse affects of delaying puberty

artificially in children, eg. Does it affect:

--Fertility?

--Menstrual cycle regularity?

--Hormone-based cancers? (Ovarian Cancer, Testicular, Prostrate...etc.)

--Sexual functioning as adults?

--Moods?

--Intellectual development? Emotional Maturity? Sense of well-being?

--Eventual penis size? (well, I had to ask...:-O)

Finally, I'm beginning to think that if you took any human being, pumped up

their appetites, gave them GHT and delayed their puberty, that they would

grow

taller/bigger. Is Dr. H's/Dr. W's growth regimen really taylored for RSS

kids,

or would it work on anyone? In other words, why is it being packaged as a

treatment for RSS children? Would this treatment work for a short child who

is

genetically programmed to be short? I think GHD kids also sometimes have

their

puberty delayed....so maybe the only unique aspect of RSS growth is trying

to

make sure their nutritional intake is enough to sustain growth. I'm

assuming

that if you gave GHT to a malnourished, starving child, he/she would not

grow at

a faster rate??

Just curious!

katy

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August 8, 2000

Katy - And this is a very long email.

Having just returned from a week in Idaho, and making my way through 197 emails

from all of you... I waited to reply to your email until I had read all the

emails. I found that no one specifically answered, so here is what we have

heard about delaying puberty from Dr. H, but also the Peds Endo Chief at UCLA

(who I double-check everything through....

Specifically using your questions, delaying puberty " artificially " - there have

been no studies that have found any links with current and past usage of Lupron

etc. to delay puberty with later cancers or fertility problems. I don't know

about menstrual cycle regularity or eventual penis size (didn't ask the latter

question since was a girl).

As to moods, we learned that it is hard to tell since teens are so moody

normally! I would think it would be less moody since their puberty is being

delayed HA!!! I specifically asked though since we have had such mood problems

with the periactin, and he said he had not heard or seen anything beyond normal

teenage angst.

As to emotional maturity, that one is up in the air. Both Dr. H (in her lecture

and in person) and Dr. Geffner both talked about how girls usually give up on

the delay meds before boys do (boys will stick with the delay because they want

to get taller; girls around 13-14 get so emotional in their needs to have

breasts and their periods like their peers).

I think the key to the latter is that you play this one by ear. It is a shot

once a month for the most common med. If your child is comfortable with their

height but uncomfortable with their sexuality as compared to their peers, you

stop it.

And finally, whew, almost done, you wrote " Finally, I'm beginning to think that

if you took any human being, pumped up their appetites, gave them GHT and

delayed their puberty, that they would grow

taller/bigger. Is Dr. H's/Dr. W's growth regimen really taylored for RSS kids,

or would it work on anyone? In other words, why is it being packaged as a

treatment for RSS children? Would this treatment work for a short child who is

genetically programmed to be short? "

The answer is a resounding NO. From the studies I have read, as well as both

Dr. H and Dr. W's presentations, GHT to a otherwise normal " short " child might

possibly give them an initial boost, but it would flatten later. Some doctors

still feel that this is acceptable for normal " short " kids to simply give them a

boost up to their peers, for self-esteem issues only.

Studies are showing that for RSS kids on GHT, their growth is jumping up 1 or

more standard deviations and continuing. Whether or not the end result is

statistically greater than what they would have obtained is still under study,

although a great deal of anecdotal evidence says that RSS kids with GHT are

gaining height as adults far beyond what their original predicted height was.

Some might say, well, maybe their predictions were wrong. Well, there are also

many RSS kids who did not do GHT, and their final heights are falling closely

within what their original childhood predictions were (anecdotal)

The KEY as Dr. H, Dr. W, and Dr. Geffner discuss is what is your child's

NORMALIZED height. This means essentially forget what the " bell curve " says,

and take a look at how many standard deviations away your child is from their

parental height and what their height would have been predicted. If your

child's height without RSS would have been 5'3 " but with RSS she is tracking to

5'0 - do you want to give her a GHT shot every night? I might not. Dr.

Geffner appears more conservative than Dr. H - he made a comment to me once that

he felt that if you started GHT with an RSS child before age 6 or so, that he

felt that he could gain at least 50% of the difference between their RSS

predicted height and their otherwise " normal " height.

Anyways. I hope I have typed enough to answer all of your questions. I for one

always love your questions and your informative emails - I can't figure out how

you have enough time or clear-headed thoughts to be so smart. I am always too

tired!!!!

Salem (, 4.6, RSS, Asymmetry, 38.5 " , 30lbs)

August 8, 2000

THanks, !

Your email was very clear and definitely cleared away some of the cobwebs in my

head regarding the use of GHT! Thanks for taking the time to put answers to my

questions...

Katy

August 8, 2000

Katy,

Regarding the Lupron used to delay puberty....You might be interested in the

road we took with Max. He does not use that drug. Instead, Max and we

chose something called Zoladex. It is inserted just under the skin in his

abdomen once every three months/86 days. Max did not want the IM shots

every four weeks. He is rather " happy " with the Zoladex now that he is used