Delaying puberty in boys with LFA
What are the advantages of being a man physiologically while being a toddler developmentally / intellectually ? How does hitting puberty help an LFA individual care / provide for himself after his parents are ashes ?
_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".
-- Hamlet, 1.5.113-116
Who stands to benefit the most from keeping a boy from becoming a man?
A parent in such a situation should consult a qualified physician for the medical details, and a lawyer for the legal and ethical details, as well.
There are ways to delay puberty and a way to prevent it entirely. However, it would need to be approved by a medical ethics board and depends on the level and type of disability. Delaying it is more likely to be approved than completely preventing it. Hormone therapy can be used to delay it. For example, Lupron, which has been used on classically autistic children (low and moderate functioning) in the past. This is only a means to delay puberty, which would occur if the Lupron stopped being administered.
As for preventing it entirely, that would also involve your child remaining child-sized forever, which is much more controversial than simply delaying puberty with hormone therapy. The first known case was a profoundly disabled girl in 2004 so the treatment is named after her. It is called the Ashley Treatment (or Growth Attenuation), although GA is only part of it, particularly for girls. It can be done on boys as well. To date, there are 65* known cases of children who have gone (or are undergoing) this treatment - two are boys, three are girls and the genders of the others are unknown. For boys, it involves the administration of high-dose estrogen over a 2-4 year period in order to close the growth plates prematurely and the treatment is typically started by the time the child is 8 years old. This treatment completely prevents puberty and growth past the age at which the treatment is complete.
Growth attenuation has only been approved for children who are severely cognitively and physically disabled.
*http://pillowangel.org/Arch%20Dis%20Child-2015-Pollock-archdischild-2015-309130Press.pdf
As for preventing it entirely, that would also involve your child remaining child-sized forever, which is much more controversial than simply delaying puberty with hormone therapy. The first known case was a profoundly disabled girl in 2004 so the treatment is named after her. It is called the Ashley Treatment (or Growth Attenuation), although GA is only part of it, particularly for girls. It can be done on boys as well. To date, there are 65* known cases of children who have gone (or are undergoing) this treatment - two are boys, three are girls and the genders of the others are unknown. For boys, it involves the administration of high-dose estrogen over a 2-4 year period in order to close the growth plates prematurely and the treatment is typically started by the time the child is 8 years old. This treatment completely prevents puberty and growth past the age at which the treatment is complete.
Growth attenuation has only been approved for children who are severely cognitively and physically disabled.
*http://pillowangel.org/Arch%20Dis%20Child-2015-Pollock-archdischild-2015-309130Press.pdf
I might add that Lupron's on-label use is chemotherapy for cancer. It has some potential side effects that can be nasty for some small percent of individuals. And anecdotally those bad effects can even more rarely be permanent. Understandable for a chemo drug. But it's also used off-label for endometriosis and precocious puberty. In no cases should it be used for more than a few years as it will affect bone density, sometimes severely enough to disable.
_________________
“For small creatures such as we the vastness is bearable only through love.”
―Carl Sagan
As for preventing it entirely, that would also involve your child remaining child-sized forever, which is much more controversial than simply delaying puberty with hormone therapy. The first known case was a profoundly disabled girl in 2004 so the treatment is named after her. It is called the Ashley Treatment (or Growth Attenuation), although GA is only part of it, particularly for girls. It can be done on boys as well. To date, there are 65* known cases of children who have gone (or are undergoing) this treatment - two are boys, three are girls and the genders of the others are unknown. For boys, it involves the administration of high-dose estrogen over a 2-4 year period in order to close the growth plates prematurely and the treatment is typically started by the time the child is 8 years old. This treatment completely prevents puberty and growth past the age at which the treatment is complete.
Growth attenuation has only been approved for children who are severely cognitively and physically disabled.
*http://pillowangel.org/Arch%20Dis%20Child-2015-Pollock-archdischild-2015-309130Press.pdf
Thank you very much for this feedback, Dr. House.
Since it is difficult / impossible to accurately predict where a child who is intellectually severely delayed / impaired at age 8, and maybe even until age 10 or so, will eventually be (cognitively) as an adult, would it be effective to delay GAT until the boy is 10 or 12, or should treatment be started before the first signs of puberty ?
Thank you again for your advise / feedback. It is very very gratefully appreciated.
_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".
-- Hamlet, 1.5.113-116
Last edited by HisMom on 29 Oct 2015, 10:32 pm, edited 2 times in total.
Right...that's the intention (I am being sarcastic, btw).
_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".
-- Hamlet, 1.5.113-116
Short answer is, "no, you can't just stop puberty". The only tools available at the present are exceedingly blunt and over time cause far more serious issues than they can possibly resolve or prevent. We're only just realizing the what and how of the gene expressions that get triggered along the way that eventually result in our bodies becoming far more sex dimorphic in adulthood. And considering that there are at least twenty such sites in the brain identified so far, and dozens or more in the endocrine and skeletal systems, it'd be an incredibly risky and irresponsible experiment.
_________________
“For small creatures such as we the vastness is bearable only through love.”
―Carl Sagan
What tools are you referring to ? Are you referring to GA ?
What are the risks and why are these tools being used if they are risky and irresponsible, and therefore, unethical ?
I am not trying to be argumentative, I am trying to understand the whys and the wherefores.
BTW, are you a physician ? If so, do you have any advise for how to ameliorate the effects of puberty on children with significant cognitive deficits (kids who are functioning at a toddler level -- and likely to, for the rest of their lives) ?
_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".
-- Hamlet, 1.5.113-116
As for preventing it entirely, that would also involve your child remaining child-sized forever, which is much more controversial than simply delaying puberty with hormone therapy. The first known case was a profoundly disabled girl in 2004 so the treatment is named after her. It is called the Ashley Treatment (or Growth Attenuation), although GA is only part of it, particularly for girls. It can be done on boys as well. To date, there are 65* known cases of children who have gone (or are undergoing) this treatment - two are boys, three are girls and the genders of the others are unknown. For boys, it involves the administration of high-dose estrogen over a 2-4 year period in order to close the growth plates prematurely and the treatment is typically started by the time the child is 8 years old. This treatment completely prevents puberty and growth past the age at which the treatment is complete.
Growth attenuation has only been approved for children who are severely cognitively and physically disabled.
*http://pillowangel.org/Arch%20Dis%20Child-2015-Pollock-archdischild-2015-309130Press.pdf
Thank you very much for this feedback, Dr. House.
Since it is difficult / impossible to accurately predict where a child who is intellectually severely delayed / impaired at age 8, and maybe even until age 10 or so, will eventually be (cognitively) as an adult, would it be effective to delay GAT until the boy is 10 or 12, or should treatment be started before the first signs of puberty ?
Thank you again for your advise / feedback. It is very very gratefully appreciated.
This treatment has never been approved for someone with severe intellectual disability but no physical disability. Ashley's (the first child) diagnosis and prognosis were static encephalopathy of unknown etiology with no possibility for improvement. She functions at a 3 month age level; she is unable to walk, talk, sit, swallow food, and has little to no purposeful movement. The other children on whom this treatment was done are similarly impaired (non-ambulatory with severe physical and cognitive disabilities). You can find more about them at the following links:
Erica* - http://www.theguardian.com/society/2012 ... icas-story
Tom* - http://www.theguardian.com/society/2012 ... toms-story
Charley - http://nypost.com/2015/10/26/parents-st ... treatment/
*Names changed.
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What are the advantages of being a man physiologically while being a toddler developmentally / intellectually ? How does hitting puberty help an LFA individual care / provide for himself after his parents are ashes ?
What makes you think there is any safe way that wouldn't cause terrible freakishness, to go about preventing a persons body and hormones developing? Not only that but for any LFAs that have such a thing done to them if nothing else ensures they'll never have a chance at improved functioning that certainly would.
_________________
We won't go back.
This treatment has never been approved for someone with severe intellectual disability but no physical disability. Ashley's (the first child) diagnosis and prognosis were static encephalopathy of unknown etiology with no possibility for improvement. She functions at a 3 month age level; she is unable to walk, talk, sit, swallow food, and has little to no purposeful movement. The other children on whom this treatment was done are similarly impaired (non-ambulatory with severe physical and cognitive disabilities). You can find more about them at the following links:
Erica* - http://www.theguardian.com/society/2012 ... icas-story
Tom* - http://www.theguardian.com/society/2012 ... toms-story
Charley - http://nypost.com/2015/10/26/parents-st ... treatment/
*Names changed.
Thank you for the links. Most LFA children *are* ambulatory with no significant physical disability, but have such significant cognitive disabilities that they function at the 18 to 24 month level (and are, unfortunately and heartbreakingly, unlikely to mentally age past that stage).
Is there any reason why these children will not be approved for GT ? Is it just that this has never explored ? Is there any ethical reason why children with severe physical disabilities would be allowed to undergo GT, but not children with intellectual / cognitive disabilities ?
_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".
-- Hamlet, 1.5.113-116
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