Growth Attenuation

[VoidCat]

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).

She can answer tho. Through behavior. As in showing if she's happy. Even babies communicate through behavior. Crying, laughter, watching you through movement. My question is how happy is she?

 

[Kiwi Jenn]

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?

I haven’t contacted them. Part of the reason we did the article was so folk like them could contact us! Noone that opposes ever has.

 

[Kiwi Jenn]

She can answer tho. Through behavior. As in showing if she's happy. Even babies communicate through behavior. Crying, laughter, watching you through movement. My question is how happy is she?

I can’t answer how happy she is. I can only tell you she is comfortable. She has happy faces at times but can’t laugh. She can let us know when she is hurting (her face reddens with stress and she frowns, her heart rate sometimes tells us about the more severe pain because she doesn’t cry much, her muscle tone also alerts us to pain/comfort)

 

[Kiwi Jenn]

She can answer tho. Through behavior. As in showing if she's happy. Even babies communicate through behavior. Crying, laughter, watching you through movement. My question is how happy is she?

“Even babies communicate through behaviour” is totally true but Charley’s behaviour is more like a newborn. “Even newborns” can grab your finger Charley’s never been able to close her hands. She has virtually no movement.

 

[Rachel Rugelach]

I haven’t contacted them. Part of the reason we did the article was so folk like them could contact us! Noone that opposes ever has.

I think that folk like them ought to be contacting you. From what little I've read of your postings here so far, you appear to very much know whereof you speak.

I wish I could stick around and learn some more, but it's nearly candle-lighting time for Shabbat here in New York and, because of the 2-day Rosh Hashana holiday, I won't be back online until Sunday night. I'll try to catch up when I'm back. Thank you for taking the time to provide us with your experience. I wish peace for you, and comfort for your child.

 

[VoidCat]

I can’t answer how happy she is. I can only tell you she is comfortable. She has happy faces at times but can’t laugh. She can let us know when she is hurting (her face reddens with stress and she frowns, her heart rate sometimes tells us about the more severe pain because she doesn’t cry much, her muscle tone also alerts us to pain/comfort)

All that is behavior. In my classes regarding teaching(I'm in training to become a special ed teacher in early childhood development) behavior is communication. And as someone who does go nonverbal sometimes I have found ways to communicate when I cannot speak through behavior. maybe your child might not be as able as I am in the communication regard but behavior is indeed communication.

 

[VoidCat]

“Even babies communicate through behaviour” is totally true but Charley’s behaviour is more like a newborn. “Even newborns” can grab your finger Charley’s never been able to close her hands. She has virtually no movement.

understandable. But as you pointed out she still has a happy face. And she can communicate pain through her face as you pointed out. I work with children who are very young some as young as 6 weeks old. Even they can communicate through behavior.
edit: I once lived with a non ambulatory disabled boy that was completely bed ridden. He had chromosomal 18 deletion syndrome and celebral palsy. I loved that kid and it was clear he had some likes and dislikes even tho he could not speak or move.

 

[Shadow Wolf]

Unlike other kids we know she hasn’t had bones broken in hoist transfers - that’s way more common than you’d think.

Things like this, wouldn't it be better to improve non surgical methods? No treatment is without risk, long term estrogen use comes with risks, going under is hard on the body.
Honestly, like many other extremely invasive procedures of the past I see an extreme need to stop the medical invasive procedures (that aren't ethically sound) and instead develop means amd procedures that can often even be non medical (such as harnesses to assist in this area I quoted) that work with the patient rather than resorting to means without clinical justification by peer reviewed research.

 

[Kiwi Jenn]

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?)

 

[Kiwi Jenn]

Be skeptical all you like - in fact, help us find one! Having some kind of choice for us and other families like us would be great! Why would we focus on something unlikely to happen in the future as opposed to giving her as good a life as we can from the get go? Why would it be of some concern to other carers that she’s smaller anyway?

 

[Kiwi Jenn]

Things like this, wouldn't it be better to improve non surgical methods? No treatment is without risk, long term estrogen use comes with risks, going under is hard on the body.
Honestly, like many other extremely invasive procedures of the past I see an extreme need to stop the medical invasive procedures (that aren't ethically sound) and instead develop means amd procedures that can often even be non medical (such as harnesses to assist in this area I quoted) that work with the patient rather than resorting to means without clinical justification by peer reviewed research.

Sure, but in all these decades of hoists being in existence they still haven’t managed to create them without risk of breaking bones… Estrogen is used by billions of women for contraception and HRT long term and is proven very safe with fairly minuscule risk. High dose Estrogen has been used for growth attenuation in girls predicted to be very tall since back in the 1060’s only because it was less socially acceptable. Growth hormones are given to kids of smaller stature, again for the same reasons - they all come with risk too. The only surgery Charley had as part of this was joint uterus/appendix removal. It involved a 60 minute GA and left a scar about 2cm long. It was the easiest, quickest and less risky of all the dozens upon dozens of surgeries she’s had to go through - and in my belief is amongst those that benefitted her the most.

 

[fantome profane]

Estrogen has been used for growth attenuation in girls predicted to be very tall since back in the 1060’s

Was that a typo?

 

[Shadow Wolf]

Sure, but in all these decades of hoists being in existence they still haven’t managed to create them without risk of breaking bones… Estrogen is used by billions of women for contraception and HRT long term and is proven very safe with fairly minuscule risk. High dose Estrogen has been used for growth attenuation in girls predicted to be very tall since back in the 1060’s only because it was less socially acceptable. Growth hormones are given to kids of smaller stature, again for the same reasons - they all come with risk too. The only surgery Charley had as part of this was joint uterus/appendix removal. It involved a 60 minute GA and left a scar about 2cm long. It was the easiest, quickest and less risky of all the dozens upon dozens of surgeries she’s had to go through - and in my belief is amongst those that benefitted her the most.

Actually it does come with a risk of stroke, blood clot, heart disease and breast cancer.

Comparing the risks and benefits of hormone therapy

Hormone therapy helps treat bothersome menopausal symptoms, but it's not for everyone. See if hormone therapy might work for you.

www.mayoclinic.org

In the largest clinical trial to date, hormone replacement therapy that consisted of an estrogen-progestin pill (Prempro) increased the risk of certain serious conditions, including:

• Heart disease
• Stroke
• Blood clots
• Breast cancer

One thing I just am not seeing is communication. I assume communication would be about like a very young child given the emphasis on that mentality that I've seen reading into this treatment.
Do we even know these hoists are comfortable or is entirely the assumptions of those who are not dealing with these issues?

 

[Kiwi Jenn]

Was that a typo?

Yes, apologies - 1960’s

 

[Subduction Zone]

Sounds more like a need to change how care approached than forcing medically unnecessary procedures on someone.
The disabled simple do not exist to convenience the nondisabled. Yes, care can be difficult. That's no reason or excuse to violate the bodily autonomy of another.

Ideally proper care should be available. But it often is not. And that can put the parents in a very tough place. What are the parents supposed to do when they cannot take care of a full grown disabled person and that state "care" is abysmal?

I do not think that this is ever done lightly.

 

[Subduction Zone]

Sure, but in all these decades of hoists being in existence they still haven’t managed to create them without risk of breaking bones… Estrogen is used by billions of women for contraception and HRT long term and is proven very safe with fairly minuscule risk. High dose Estrogen has been used for growth attenuation in girls predicted to be very tall since back in the 1060’s only because it was less socially acceptable. Growth hormones are given to kids of smaller stature, again for the same reasons - they all come with risk too. The only surgery Charley had as part of this was joint uterus/appendix removal. It involved a 60 minute GA and left a scar about 2cm long. It was the easiest, quickest and less risky of all the dozens upon dozens of surgeries she’s had to go through - and in my belief is amongst those that benefitted her the most.

As one who is not qualified to judge at all in this sort of situation, as I stated from the start, I could see how there might be good arguments from both sides. Here in the US, for all of our wealth, the care for the disabled by the state is often lacking. I know from personal experience that staff at nursing hones are often heavily overworked. Those on that have the largest amount of contact with the elderly and disabled usually cannot give the care that is needed. I supplemented my father's care for ten years and was told multiple times that the reason that he survived so long was because I was there to make his life better almost every day of the year. When the staff was overworked, such as for changing I always was ready to lend a hand with my father since it took at least two to handle him. I also was there to feed him at least once a day when he could no longer feed himself and got him more time outside than anyone else i the facility.

Anyway after reading your accounts I can see that it was not a matter of convenience for you and appears to what was best for your daughter She is lucky to have such devoted parents. Earlier I was not sure about this, but I can see how it can make a child's life longer and healthier.

 

[Kiwi Jenn]

Actually it does come with a risk of stroke, blood clot, heart disease and breast cancer.

Comparing the risks and benefits of hormone therapy

Hormone therapy helps treat bothersome menopausal symptoms, but it's not for everyone. See if hormone therapy might work for you.

www.mayoclinic.org

One thing I just am not seeing is communication. I assume communication would be about like a very young child given the emphasis on that mentality that I've seen reading into this treatment.
Do we even know these hoists are comfortable or is entirely the assumptions of those who are not dealing with these issues?

I didn’t say it was without risk, but fairly minuscule - and certainly acceptable for long term use of contraception, for example, even when other alternatives without risk exist.

When it came to growth, we tried to see it as if we were in Charley’s body and brain. If I were a newborn cognitively, would I rather be hoisted and hosed down or would I rather be carried and held and comforted?

Then longer term it came down to two questions:

Is there anything she’d gain by growing to full size? The answer was no, in fact the opposite was true. And is there anything she’d miss out on by remaining smaller? Again, the answer was no, in fact the opposite was true.

 

[Kiwi Jenn]

I think that folk like them ought to be contacting you. From what little I've read of your postings here so far, you appear to very much know whereof you speak.

I wish I could stick around and learn some more, but it's nearly candle-lighting time for Shabbat here in New York and, because of the 2-day Rosh Hashana holiday, I won't be back online until Sunday night. I'll try to catch up when I'm back. Thank you for taking the time to provide us with your experience. I wish peace for you, and comfort for your child.

Enjoy your special time x

 

[Kiwi Jenn]

All that is behavior. In my classes regarding teaching(I'm in training to become a special ed teacher in early childhood development) behavior is communication. And as someone who does go nonverbal sometimes I have found ways to communicate when I cannot speak through behavior. maybe your child might not be as able as I am in the communication regard but behavior is indeed communication.

Yes, but it’s limited beyond what most will ever experience. As I said I can tell when she’s hurting (then do a process of elimination to find why) or when she’s happy (usually that simply means not hurting…) but I can’t tell you “how happy” which is what I was originally asked

 

[Saint Frankenstein]

I think you are probably the only one here who as any right to talk about this topic.

How stupid. I guess you'd better shut up about abortion unless you've had one, right?