Lupron = chemical castration?

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dgdavis64
Posts: 5241
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Postby dgdavis64 » Sat Apr 29, 2006 11:44 am

Wow, you guys have perfected the art of tag teaming! Interesting pattern....

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mom_of_an_autie
Posts: 734
Joined: Sat Apr 01, 2006 6:18 pm

Postby mom_of_an_autie » Sat Apr 29, 2006 12:04 pm

How right you are Diane. I have not posted a whole lot but I have READ a whole lot and a very interesting pattern is starting to emerge on exactly which posters seem to jump into threads to defend each others points when they all seem to be against biomedical interventions. I am sure I will be corrected if I am wrong, but wasnt the point of the biomedical board being created for the purpose of discussing these issues here instead of the general board? Yet posters who DO NOT believe in or follow a biomedical intervention plan for their own children come here to save other parents from themselves. I have said it before and I will say it once again we do NOT need anyone to tell us to do reseach before following anyones advice. We have minds of our own. We have the ability to read what we want and take from it what we want and dump the rest. Give us credit for looking for answers for our OWN situation. Use your passion and willingness to help people on the general board with questions they have about things you have experience with. Thoughts are not being provoked by sarcastic posts. Unfortuanately I do not think it is thoughts some are after as much as I think it is controversy.

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

Postby srinath » Sat Apr 29, 2006 1:03 pm

Winnie wrote:<snippage>

Srinath,

You wrote:
... and I spend less than 1/2 hour with him on average per day ...


Judging from this thread alone, you have spent more time today provoking people. And that observation IS intended to provoke thought.



You (mild expletive deleted) ... look at the time stamps on my posts ... My son for reference goes to bed at ~7:30 EST and is up and out to school by 6 am. I work weird hours since I do on call production support. I post from work or from home while working after he's gone to bed ... not that its any of your darn business ... He's asleep or I am at work when I post and that's not just here ... I guess you have all the time in the world ... so any time on the net you spend is away from your kids.
Cool.
Srinath.

littlebopeep
Posts: 1387
Joined: Wed Feb 15, 2006 5:33 pm

Postby littlebopeep » Sat Apr 29, 2006 1:47 pm

2) delete all negative references to individuals, 3) delete extraneous negative language, and 4) check the attitude and tone.


Are you politely presenting a different point of view, or are you venting your own distrust, anger, frustration, and/or world view in someone’s direction?


Quotes from the webmaster. Just sayin'.
Fred, 7, NT
Barney, 5, autism

dgdavis64
Posts: 5241
Joined: Sun Mar 20, 2005 11:51 pm

Postby dgdavis64 » Sat Apr 29, 2006 2:21 pm

And look who joins in to save the day! What a SURPRISE!

I wonder if I can figure out who'll be the one to post next?


Bo Peep wrote:

"Quotes from the webmaster. Just sayin'."


Wouldn't you say the horse has long bolted from the barn on this one? No sense in shutting the door now.


How hilarious! Just can't stop laughing! :lol: :lol:

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Winnie
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Joined: Sat Mar 18, 2006 2:48 pm

Postby Winnie » Sat Apr 29, 2006 3:02 pm

Turning over a NEW LEAF?


I am trying to abide by the extended forum rules.

Just a friendly observation: Some topics lend themselves to debate due to their controversial nature. This thread deals with Lupron -- and there is much controversy regarding this treatment, even among the DAN! community. As this is a controversial medical treatment, it is important to consider the "cons," side effects, and medical underpinnings.

There are parents on this thread who do have expertise on the topic, those who currently are and have previously used biomedical treatments, and those who are able to clarify or correct information. There are other parents on this thread, that although not particularly interested in discussing the pros/cons of this protocol, do seem interested in driving parents from this board and silencing all discussion.

If controversial discussion or debate threads evoke anger in some posters, perhaps they would be better served to avoid the discussion -- there are so many other opportunities to post on this board.

In fact, I notice several unanswered (or minimally answered) posts on the biomed forum. Those parents would probably appreciate the responses of parents recovering their children via biomed.

:)
Winnie
"Make it a powerful memory, the happiest you can remember."

BTDT
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Postby BTDT » Sat Apr 29, 2006 3:47 pm

I am sure I will be corrected if I am wrong, but wasnt the point of the biomedical board being created for the purpose of discussing these issues here instead of the general board?


The webmaster has said in a previous threads that posts for and against biomed belong in the biomed forum.

Thanks, Grandma C, and let me add that we did divide the board into a support/advice/education category and a biomedical category last year. We did this at the request of people who were not interested in biomedical and who didn't want to read biomedical posts. I would like to request that in the future, if you have a biomedical post (EITHER FOR OR AGAINST), that you please post it in the biomedical category

http://www.autismweb.com/forum/viewtopi ... c&start=40

dgdavis64
Posts: 5241
Joined: Sun Mar 20, 2005 11:51 pm

Postby dgdavis64 » Sat Apr 29, 2006 4:21 pm

Winnie wrote:

"There are parents on this thread who do have expertise on the topic, those who currently are and have previously used biomedical treatments, and those who are able to clarify or correct information. There are other parents on this thread, that although not particularly interested in discussing the pros/cons of this protocol, do seem interested in driving parents from this board and silencing all discussion. "


Are you saying you have personal experience with Lupron within the biomed realm? This seems to be the extent of your biomed treatment:

Winnie wrote:
" I ordered my Kirkman’s samples (luckily some of these preparations are more palatable today than they were then), and tried other items (DMG, TMG, Epsom salts, B vitamins, etc) that bore Bernie’s stamp of approval at the time. None seemed to have any remarkable effect one way or another. Secretin was the belle of the ball, and I was interested, though since we were launching a home program, I decided to delay this consideration. I was concerned that, should we see a significant bump in progress, I would not be able to tease apart the treatment responsible, and therefore be obligated to continue a treatment that could be ineffective. Besides, every other child with autism I personally knew at the time was receiving infusions, so I figured there would be plenty of opportunities to observe changes in children I knew. The GFCF diet was up and coming at the time, and I was interested, though I put this on the “back burner” for the moment as I was completely absorbed in getting the home program up and running – but I did not rule it out. I also personally knew many parents (and their children) implementing the diet. My child did not have obvious food sensitivities and or GI symptoms reported at the time (like diarrhea or eczema) – if he had I’m sure that I would have bumped this up the list of priorities.



You act as if EVERY parent on this forum is running out to get a Lupron prescription. This is simply not the case. You insult the intelligence of all parents here by assuming that YOU'RE the ONLY one CAPABLE of asking questions and that you're doing this in the name of saving them from themselves and you're not even doing/researching/advocating biomed. I'm obviuosly not the only one to have come to this conclusion.

You lost all your credibility many, many posts ago when people started to question your identity and whether or not you were posting under multiple names.

Winnie wrote:

"If controversial discussion or debate threads evoke anger in some posters, perhaps they would be better served to avoid the discussion -- there are so many other opportunities to post on this board."

Yes, Winnie, PLEASE DO. Now, watch out for all those bricks!

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LM
Posts: 848
Joined: Thu Jan 26, 2006 10:54 pm

Postby LM » Sat Apr 29, 2006 4:33 pm

I happen to have experience with all of the following in some capacity over the last year - not that it should even matter either way in terms of having an opinion, but since some here seem to think it's a prerequisite for contribution to this side of the board, I thought I'd post them.

Glutathione
Folinic Acid
Taurine
Bethanochol
MB12 shots
NDF
NDF Plus
TTFD
DMG
TMG
L-Carnosine*
Colostrum
Inosine
Enzymes (Houston's AFP Peptizyde, Zyme prime)
Brainchild Multi Vit*
Brainchild Multi Min*
Brainchild Intestamend
Cod liver oil*
Zinc
CoEnzyme Q10
Cal-Mag Butyrate
IgG2000 DF
Phosphatidyl Serine
Grapefruit seed extract
ALA
DMSA
HEPA PLUS
Homocysteine Calm
The entire Spectrum Biogenics line
Epsom Salts
GFCF
Vitamin E
Probiotics (various brands)

Many are still taking up valuable cabinet/refridgerator space as we speak. With the exception of a few* we still use, I personally found all of these to be ineffective. And some of them actually made my son quite ill.

I will continue to post my opinion on these, well as question those I don't have personal experience with (Lupron), and I encourage/welcome others to do the same. I know parents can make up their own minds about what's right for their kids, but personally, I like to hear both sides of the story before making decisions and I think there are other parents out there who feel the same.

So far this has turned into a string of name calling and personal attacks, and not by those who've been questioning Lupron.

littlebopeep
Posts: 1387
Joined: Wed Feb 15, 2006 5:33 pm

Postby littlebopeep » Sat Apr 29, 2006 4:36 pm

dgdavis64 wrote:Wouldn't you say the horse has long bolted from the barn on this one? No sense in shutting the door now.


I'll have to give you that one, dg.

But,
whether or not you were posting under multiple names.
???? Is it so hard to believe that several parents share Winnie's concerns?
Fred, 7, NT

Barney, 5, autism

mom_of_an_autie
Posts: 734
Joined: Sat Apr 01, 2006 6:18 pm

Postby mom_of_an_autie » Sat Apr 29, 2006 7:16 pm

From the Webmaster....


"Some people say they are trying to prevent a new parent from being "misled" by a positive or negative post about X or Y treatment. Assume that people can make up their own minds, that parents are not ignorant, that anyone who comes here does so because they love their child, and that behind every pseudonymous post is a real person with a story you couldn't possibly know. Please make your points, but please remove the drama, sarcasm or one-upmanship."



BTDT I have no problem with parents discussing what hasnt worked for their child because those comments are as important as positive experience in my opinion. What isnt ok is to questions a parents integrity and do everything in their power to post links and previous threads to all but call them a liar. It isnt ok to question a parents choice of doctor or route of treatment when it is not your child in question. I am not saying you do this. This is my point, these threads ONLY become aggressive when negative points of view are NOT presented in a respectful manner. No parent wants to be attacked when posting their personal experience about what has and hasnt worked for their child.


I personally read peoples posts and if I find the information sound too good to be true I move on. I dont get any satisfaction by trying to ruin their credibility. Maybe I am naive but I guess I just dont see why a parent of an autistic child would lie about what has help their child. What would they get out of it? I think ALL of the parents who post on this board have one thing in common - they love their child/children. At least that is something I hope we all can agree on.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Postby Winnie » Sat Apr 29, 2006 8:01 pm

I will continue to post my opinion on these, well as question those I don't have personal experience with (Lupron), and I encourage/welcome others to do the same. I know parents can make up their own minds about what's right for their kids, but personally, I like to hear both sides of the story before making decisions and I think there are other parents out there who feel the same.


I agree LM. For example, when full-page advertisements appear in nationally-read newspapers stating that autism is mercury poisoning, this affects the entire autism community, including my child. I believe that EVERY parent of a child with autism has reason to question treatment, especially the controversial ones.

And no, I haven't used the Lupron protocol with my child, and neither have any of the other posters on this thread -- excepting Erik.

If only one side (the "up" one) of a treatment can be discussed on a forum -- it becomes adoration, not discussion, and a fan-club, not a forum.

The webmaster's points regarding debate are well-taken, and I believe both sides should heed the rules.

Once again, there are plenty of opportunities to contribute on this board off the controversial threads.
Winnie
"Make it a powerful memory, the happiest you can remember."

dgdavis64
Posts: 5241
Joined: Sun Mar 20, 2005 11:51 pm

Postby dgdavis64 » Sat Apr 29, 2006 8:19 pm

Here she is folks! Bringing up the rear to complete the rescue!!

How did I know she'd be the next one to post? I must secretly be a psychic!

Look out, Sylvia Brown!

LM wrote:

" Many are still taking up valuable cabinet/refridgerator space as we speak. With the exception of a few* we still use, I personally found all of these to be ineffective. And some of them actually made my son quite ill.

I will continue to post my opinion on these, well as question those I don't have personal experience with (Lupron), and I encourage/welcome others to do the same. I know parents can make up their own minds about what's right for their kids, but personally, I like to hear both sides of the story before making decisions and I think there are other parents out there who feel the same.

So far this has turned into a string of name calling and personal attacks, and not by those who've been questioning Lupron."


I'm still laughing, what a joke! :lol: :lol:


Nanny, nanny, boo, boo! Shoo flies!

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Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Postby Winnie » Sat Apr 29, 2006 8:37 pm

Wait!!!

We haven't gotten to the point in the thread where we tell each other how wonderful and smart and dedicated we are yet!

:wink:
Winnie
"Make it a powerful memory, the happiest you can remember."

LM
Posts: 848
Joined: Thu Jan 26, 2006 10:54 pm

Postby LM » Sat Apr 29, 2006 8:46 pm

I must secretly be a psychic!

Look out, Sylvia Brown!


frankly I wouldn't be surprised if Sylvia Brown were a part of many protocols being discussed here :D

Gabesmom
Posts: 643
Joined: Mon Mar 27, 2006 10:35 pm

Postby Gabesmom » Sat Apr 29, 2006 10:46 pm

Boy, things have been awfully quiet over on the other side. Now, I guess I know why. Anybody want to come back? It's getting a little lonely over there. :(
Jennifer, Mother to Anna, 5 (NT), Gabriel, 4, Autistic

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

Loooooong list

Postby srinath » Sat Apr 29, 2006 11:34 pm

LM wrote:I happen to have experience with all of the following in some capacity over the last year - not that it should even matter either way in terms of having an opinion, but since some here seem to think it's a prerequisite for contribution to this side of the board, I thought I'd post them.

Glutathione
Folinic Acid
Taurine
Bethanochol
MB12 shots
NDF
NDF Plus
TTFD
DMG
TMG
L-Carnosine*
Colostrum
Inosine
Enzymes (Houston's AFP Peptizyde, Zyme prime)
Brainchild Multi Vit*
Brainchild Multi Min*
Brainchild Intestamend
Cod liver oil*
Zinc
CoEnzyme Q10
Cal-Mag Butyrate
IgG2000 DF
Phosphatidyl Serine
Grapefruit seed extract
ALA
DMSA
HEPA PLUS
Homocysteine Calm
The entire Spectrum Biogenics line
Epsom Salts
GFCF
Vitamin E
Probiotics (various brands)

Many are still taking up valuable cabinet/refridgerator space as we speak. With the exception of a few* we still use, I personally found all of these to be ineffective. And some of them actually made my son quite ill.

I will continue to post my opinion on these, well as question those I don't have personal experience with (Lupron), and I encourage/welcome others to do the same. I know parents can make up their own minds about what's right for their kids, but personally, I like to hear both sides of the story before making decisions and I think there are other parents out there who feel the same.

So far this has turned into a string of name calling and personal attacks, and not by those who've been questioning Lupron.


OK that is a loooooooooooong list ... I mean rrrrrrrreeeeeeeeeeeaaaaaalllllllllllllllllllllllllllllllyyyyyyyyyyyyyyyyyyy looooooooooooooonnnnnnnnnnnnnnnnnnnggggggggggggggggggggggg list ... In 4-5 months, I only tried, I dunno maybe 6 or 7.
NDF (+ and then regular), B12, brain child vits and minerals, TD glut, epsom, e lytes, CLO, Primrose oil, LL, Bifido ... maybe 1-2 others. Lupron DMSA is next.
NDF took a while to come into its effective range, B12 was immediate, Glut and LL seem to be doing very little but maybe they are helping NDF work better, the rest are all too small to make much diff. By heaping that many maybe you canceled each one ... for example ... zinc and DMSA ... DMSA has such a huge affinity for zinc and selenium, you need to not let the 2 get together. In a strange way this specific post is rather depressing. I heard someone who tried everything and his kid never got better ... including quit and sell his electrical business and house and move to get therapy and what not ... His 8 year old son never got better ...
Cool.
Srinath.

Alex's mom
Posts: 1626
Joined: Sat Mar 18, 2006 2:11 pm

Postby Alex's mom » Sun Apr 30, 2006 12:15 am

Nothing intelligent to add here, but I think this thread should reach 200 posts, so I'm contributing my 0.02 $.
LM- impressive list indeed. Actually ours is similar (maybe a few things short and a few extras added in), I hear you about the cabinet space, DH jokes that this is my anti-anxiety treatment rather than Alex's ASD management.
I don't understand why Diane is laughing so hard, but it's good to see people in good spirits :)

Mom-of-an autie:

Maybe I am naive but I guess I just dont see why a parent of an autistic child would lie about what has help their child

Of course nobody would lie about something like that. But I have to say, one thing that puzzles me is how sometimes people seem VERY SURE of WHAT exactly has helped. In my own experience (and I am very analytical by nature), short of a "wow" reaction (almost cause and effect type thing)- which can be either good or bad- most of the time there is no clear measurable effect of any of these supplements. My son's general learning curve is upwards, but with bumps in the road, temporary setbacks, good stretches etc. I'm sure that this pattern is the rule as far as ASD goes, rather than the exception. Some of the supplements I thought were helpful were later stopped with absolutely no problems. I'm actually excited to have finally given myself permission to downsize his supplement cocktail. Our kids are all young (I noticed no parents of older children on this board) and at a time that things are done to them all the time and they mature. None of the parents who post here are the kind of parents who won't spend time with their children, read to them, interact and engage them etc. So I think it must often be hard to tell exactly where credit is due, or we may attribute progress to the supplement du jour, when in fact it may well be that the supp. was given right prior to a developmental spurt that would have happened anyways. Which is why I think hearing more stories about these interventions would help and why I think that hearing about isolated results shouldn't substitute for questioning something that we feel doesn't quite stand up closer scrutiny or something that sounds almost too good to be true (like products with pages of purported benefits for everybody in every body organ).
Alex's mom

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

Sharp

Postby srinath » Sun Apr 30, 2006 12:36 am

In my case NDF and glut came far before most else ... and it produced a wow ... first negative ... as in more frustration, then the rest caught up. Then we added suppliments ... might as well not have ... did very little. Then B12, next wow. Then school, third wow. I stop the NDF and saw a shade of regression and then he slowly bounced back ... Now everything is going to stay the same and we lupron/DMSA him. I'll keep you posted. I am going to have no trouble isolating the main players from the cheer leaders and spectators when it comes to suppliments. Main key is to not pile them all in at one time. Its not a game of "who ever with the most suppliments wins" ... its what he needs that is going to take him there ...
Cool.
Srinath.

Gabesmom
Posts: 643
Joined: Mon Mar 27, 2006 10:35 pm

Postby Gabesmom » Sun Apr 30, 2006 12:49 am

Alex's Mom,

You make a great point and one that I have thought about making but was afraid I might offend someone. I have noticed on this board and others many people mention the progress that their kids have made between the ages of two and three. Some of these people swear up and down it had to do with this supplement or that supplement or this program or that program. I was not there and don't know so I'm not in any real position to judge the efficacy of any biomedical protocol or of any of the more traditional interventions for their child. However, I must say, that my son has not received any outside help of any kind and the only supplements we have started him on are fish oil and a regular multivitamin, and his progress has been remarkably similar to many of the other kids who have had tons of interventions of one kind or another. I make this point not to undermine the obvious efforts that all of these parents are making to help their kids. I think that some children do respond positively to biomedical treatments. Hey, my son might be one of them, but then again, he might not. We haven't gone down that road yet, but it doesn't mean we won't at some point in the future. Likewise, to be fair, some children respond very positively to ABA, Floortime, etc. Again, my son might be one of them or he might not. I don't know, but what I do know is that we are a very powerful influence in the lives of our children, and just being with them, doing the things that all parents do- playing, laughing, creating structure, establishing discipline, providing a nurturing environment, all of these things have a great impact on our kids' overall development.

Now, my son is high functioning, so I won't presume to know what it's like to have a child with severe autism. I imagine if my son were severely affected I would have already pursued every possible avenue and tried almost every potential remedy. I cannot blame these parents for trying things that might be considered risky by some. I suppose it's the difference between someome with stage 1 cancer and stage 4. It's a lot easier to be conservative with treatment and to take things more slowly when death is not imminent than which it's staring you in the face. So, I do think we ought to give these parents a break and give them our full support. I realize that there are many controversial treatments out there, and everyone should definitely do their homework before pursuing them (this is equally true for the not so constroversial treatments as well). However, it is up to every parent to do a risk/benefit analysis to determine what is the most appropriate treatment for their child. For me, I don't feel like my back is up against a wall yet. My son has a lot going for him, and I don't want to lose sight of all of the positives while I'm trying to find a way to fix the negatives. I want my son to have a happy childhood even if everything isn't perfect.
Jennifer, Mother to Anna, 5 (NT), Gabriel, 4, Autistic


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