Yes I did just join to comment. Years ago I set up a google alert with some key words so that’s how this came to my attention. I don’t offer to answer questions often - mostly because we’re too busy
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Growth Attenuation
- Thread starter VoidCat
- Start date
VoidCat
Use any and all pronouns including neo and it/it's
I don't want to be rude. but the reason I asked this:
is because it's suspicious. what are the odds a parent who has done this would join after I made this thread and seemingly joined just to comment on it? Especially after people on the thread have talked bad about the treatment. Especially claiming to be the parents of such a famous case. I'm hopeful this is the parents but they are more likely a troll. So Im still going to ask my quesions but I'm a little skeptical.
VoidCat
Use any and all pronouns including neo and it/it's
how does someone set up such a google alert? I never heard of such a thing.
Hello to you too… Thats quite a starter list! My little guy has sleepover friends here right now so I’ll get to this I’m chunks when I can but the easiest of them to answer is yes, Charley is still alive. She just turned 18 last week. She remains much as she did in almost every way as she was when the AP article came out 8 years ago.
Orbit
I'm a planet
I have one set up to alert me when my name appears on the web, but I forgot how I did it, it was so long ago.
Secret Chief
Very strong language
This is way above my pay grade, except the testing on mice bit.
VoidCat
Use any and all pronouns including neo and it/it's
ok so it's very possible this is the parents. Interesting. Well @Kiwi Jenn nice meeting you
Create an alert - Google Search Help
You can get emails when new results for a topic show up in Google Search. For example, you can get info about news, products, or mentions of your name. Create an alert Go to Google Alerts. In t
support.google.com
Ironically you may need to google how to google alert…
VoidCat
Use any and all pronouns including neo and it/it's
don't take my laughter as me mocking. I just found the comment funny cuz yes it is ironic
Shadow Wolf
Certified People sTabber & Business Owner
Did you not think of the future? You'll be dead, your kid in an institution anyways, so how does this staying at home thing really play out as a benefit and not as something that merely delays the inevitable (with the cost being procedures that in the end were entirely useless)?
Shadow Wolf
Certified People sTabber & Business Owner
That is such bull. We debate and discuss topics all day, every day despite the fact there might be one or two, maybe a few, experts in that area. But that's ok, especially here where it's apparent many of us are getting our information from legit sources. Which means we aren't experts but we are educating ourselves about the subject and learninh from what the experts and research do say.
Me? I'm not an expert. I just learned of this a few days ago. But that hasn't stopped me from learning and noticing a harrowing lack of evidence to actually support the claims of therapeutic benefit. Even the defenders (like the article I linked ti earlier) turn up empty handed when it comes to demonstrating a necessity for the procedures to allow for an improved quality of life for the patient.
Or, next time we have a discussion on trans issues or the environment tell everyone excpet the few who actually are experts to shut up.
I usually do exactly that regarding the trans issue.
You think the future isn’t always a huge concern? Yeah, we considered it… Truth is, we’re highly likely to outlive Charley. The oldest in a similar condition to her that I’m aware of within our peers is 32. To add extra worry, there are no institutions in New Zealand that could take her. There’s not even a respite home for a weekend. We were offered respite (3 hours drive away) through a rest home for the elderly when she was a toddler.
We’ll care for her as long as we’re breathing ourselves. That’s the only plan we can have here unfortunately.
As for the costs, the treatment of Estrogen costs very little and the surgery (uterus removal) is fairly low cost
That’s ok! I wrote it that way deliberately.
Thank you, Jenn, for joining the conversation. I really want to learn and, if you truly are who you say you are, then I hope you will excuse anything hurtful that I may have posted. I really never expected a parent of one of these poor children to come here.
From the link you posted, I can empathize with the following:
"A doctor once told Jenn he would never do such a thing to his child. Well, aren’t you lucky, Jenn replied, that you never had to make that choice... [Charley's] parents wanted to eliminate the pain of periods and the risk of pregnancy if she was ever abused, along with the discomfort of breasts since she spent so much time lying down and strapped into wheelchairs."
I would be interested to know whether you have ever, in the course of serving as an advocate for your child and the choices you made, contacted The American Association on Intellectual and Developmental Disabilites (who oppose the procedure) in an attempt to share your experience? If so, what was the result?
VoidCat
Use any and all pronouns including neo and it/it's
They from New zealand. Maybe they wouldn't have contacted an american group? I don't know. So Imma ask a similar question to you: @Kiwi Jenn did you contact any major groups that help decide ethics regarding medical stuff in new zealand? if so how did it go?
Shadow Wolf
Certified People sTabber & Business Owner
So why was the reality of the possibility of you not being there noy considered as part of the treatment plan, especially if there is no place where you live (I'm skeptical there are none in the entire country. Not even a church facility in the entire country?)?
The current position among most medical research institutions is that they have more benefit than mere replaceability. Even the RSPCA doesn't deny the necessity of animal testing for some medical research, but it seeks to regulate such research and limit it to absolutely necessary scenarios:
Laboratory Animal Welfare - Animal Research & Testing | RSPCA - RSPCA - rspca.org.uk
Find out more about the use of lab animals in experiments and research, and the importance of finding humane alternatives.
Also:
Mice
Why do we use mice? Over eight out of ten animals used in research at Cambridge are mice. Their short life span and fast reproductive rate make it possible to
Why Animal Research?
Many people have questions about animal testing ethics and the animal testing debate. At Stanford, we emphasize that the humane care of laboratory animals is essential, both ethically and scientifically. Poor animal care is not good science.
I strongly support efforts to regulate, reduce, and develop alternatives to medical animal testing, but I can't dismiss the expert views on its importance for the development of medications and medical procedures that significantly benefit both humans and other animals. When someone takes their pet to a vet and easily finds a medication or treatment for what is ailing the pet, it is quite likely that the medication or treatment has previously been tested on animals. I have seen medical researchers being demonized for doing work that benefits both humans and other animals even though there's currently no equally viable alternative to it. I think that kind of position lacks nuance.
Answering more as time allows - it’s a busy wee morning here…
I’m not aware of studies. I’m also not sure sure how that could even be achieved, firstly because “quality of life” is totally subjective and opinion based and would differ widely for every individual and secondly because folk like Charley can’t answer anything so someone else would have to answer on their behalf (as we have to with literally everything - what they eat, HOW they eat, what clothes they wear etc).
Zero regret. None. It’s the single best thing we’ve ever been able to do for Charley. The benefits we expected (and got) were that it’s much easier and faster than it would have been to physically move her, so we do it far more often (and she benefits in all sorts of ways from that alone). Unlike other kids we know she hasn’t had bones broken in hoist transfers - that’s way more common than you’d think. Her bone density is better than many of her peers (Estrogen increases bone density through improved circulation, including to bone marrow). She hasn’t has one single pressure sore, in part because her body weight of 25kg isn’t heavy enough to cause them. Some benefits we didn’t see coming were reduced high tone and dystonia (for 6 times and hour to 6 times a day) and a complete elimination of seizures - from 200+ a day to literally nothing in 3 days flat. The reduction in muscle tone has also reduced the extreme pain she had from bone on bone rubbing of dislocated hips to the point where we no longer have to face removal of the top half of each thigh bone. A reduction in high tone meant a reduction in pain overall too, so her eyes that used to constantly roll in the back of her head (as a pain response) are now mostly always in a neutral position (which is obviously less painful in itself)
Hand on heart, there has not been one single negative.
It was actually a really easy decision. The difficulty was in trying to gather information and have open
discussions with medical professionals in order to make that decision.
Decisions that families make - to do or not to do - can’t really be compared because they all have choices. Once those choices are made they’re not always possible to change (both ways - treatment done or not done - in this particular case involving growth, because it’s a time sensitive decision). What I can tell you is that out of the people we know with kids in a similar circumstance and that know us and Charley, most wish they’d done what we chose to do.