Lupron = chemical castration?

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BTDT
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Postby BTDT » Sun Apr 30, 2006 10:25 am

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 agree with Alexsmom here, I don't think anyone is intentionally lying, but in those first 2 years or so after diagnosis, it is difficult to tell sometimes exactly what is helping. Unfortunately, most parents don't realize this until after the fact. Once you start scaling back on some of the treatments/therapies, and you realize that your child is still making progress, is when you see that children with autism, just like other children, do develop without intervention as well. When we first start out we examine each day, and even each moment, of our child's lives to try to figure out what is helping. But, you really need to look at the big picture, not day to day improvements and regressions to truly see what has helped and what hasn't. Also, I think taking away some of the therpies and seeing what happens can be important at times.

Parents are in a difficult position, we don't know exactly what treatment helps autism, if any, and that is further complicated by not knowing what treatments will help any individual child. I know I have tried some things that other parents said helped their child, and those treatments seemed to make my son worse. (That goes for alternative and traditional meds.)

This is even further complicated by the pressure to do something while the child is still very young. So we research and decide what treatments we would like to try, then throw a bunch of treatments at these kids, and they improve, or don't, but we really don't know what would have happened if we hadn't treated them. And I'm not saying we should try to find out, I'm not advocating non-treatment, I'm just saying there are factors that cloud our perception of what is working and what isn't.

For example, my own son who is 6 and severely autistic, from the ages of 2-5 we did many treatments, alternative and traditional. None of these treatments seemed to make much difference for him, although at the time I was giving them I examined every little blip up and down and at times I thought they were helping. After the age of 5, we scaled way back on therapy, and suppliments. We did do some trials of traditional meds for behavior issues, none of which "worked" for him either. However, in the past year or so, he has gone from understanding 3 words, to understanding about 10 words, and is even following some directions when in context. This has made a huge improvement for him functionally. (BTW, these improvements also came after he received his 5 yo vaccinations.) And I have no idea why he made this improvement.

There is just so much we don't know about autism, and about our children's individual biochemistry and brain functioning. This just makes it really difficult to tease out what treatment is actually improving the brain functioning. These kids will also make inexplicable improvements and "regressions" as well.

littlebopeep
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Postby littlebopeep » Sun Apr 30, 2006 1:38 pm

If a doctor had told me when Noah was 3 that he was on the Spectrum, I could have easily believed it, as he was a nightmare! His behavior was way beyond challenging, his eating and his general ways were idiosyncratic, to put it mildly. Every day was a struggle and many was the night I ended up in tears because he was so difficult and just plain strange. Of course, he is not autistic. He was three. Four brought slight relief and five was the magic pill. He is, at this moment, playing chess with his dad, conversing quietly and taking turns like a civilized person. This is an extraordinarily different kid than the one we knew three years ago.

I am not advocating that parents of ASD kids do nothing. Every parent must choose the course he deems best for his child. My point is that maturity makes for big changes in the child.

Our Alex goes to a preschool for autistic kids and every day gets specialized attention. His social skills have improved and he has just "woken up" in general in the three short months since he started. I can't say for sure that the school is or isn't responsible for this improvement, although I'm sure it has helped. I have a strong feeling that good ole Father Time had the biggest hand in his progress.

So much progress happens for every kid between ages 2 and 5 - NT and ASD alike.
Fred, 7, NT
Barney, 5, autism

srinath
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Cod

Postby srinath » Mon May 01, 2006 9:16 am

In my case, my son made a lot of gains between 2 years 10 months and 3 years 2 months. In fact in those 3-4 months he made up a whole year in some aspects, and several months in other aspects ... Mine was always most likely to be high functioning, but he was high symptom. Things that bug will drive him to distraction ... and he'd have a massive screaming fit even after the problem is fixed and just break down. Nowadays taht is almost gone. He does have that total lack of patience ... some of which is typical ... but no more hours screaming without knowing why. Literally NDF and B12 ... very very sharp ramp up to the new level ...
Cool.
Srinath.

srinath
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What

Postby srinath » Mon May 01, 2006 10:04 am

Winnie wrote:
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.

<snip>
:)


OK controversy among the DAN community ... isn't new ... each person is partial to their protocol. Andy C*t*l*r says his protocol is the best, Dr N*e*bra*der swears by B12 shots, Dr Bu*ta* swears by DMPS ... and Dr G is Lupron DMSA, and Dr Haley is working on Adenosyl 2 Lipoic acid and says its will be strongest, safest and cheapest chelator. That doesn't make someone right and someone else wrong. Its possible to get to the same result 100's of ways, common themes, heal the gut, remove foods the kids are sensitive to, build up their vitamins and minerals and remove mercury. I am sure in 2 years I will look back on Lupron and DMSA and I did and say ... man I should have waited for Ad2-L A ... just like secretin was the buzz 10 years ago. However I will ahve to evaluvate on one hand what is available now and not wait for ever. Who knows ... may be 5 years before AD2-L-A comes out ... I'll be trying to then treat a 8 year old who has suffered most of his life and is so far behind ... even us getting out the mercury will probably matter little. In a sense the less research oriented DAN doc's are likely to be more neutral and not coral you into a pre set pattern. They'd most likely determine it after testing your kid. If it was 10 years ago and secretin was what I had available as an option, I would have started it. BTW secretin also lowers testosterone, as does adding glutathione. Just not very much and very effectively. When that happens the kids show a spike in progress only to drop back into their previous location slowly (OK a bit higher than their previous stage) ... and it needs to be repeated many times and in effect is very indirect ... I cant wait for a better and safer chelator and I am starting treatment with the best available, and one that has worked in many parents cases (atleast DMSA has been proved).
Cool.
Srinath.

srinath
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This is where we should be posting ...

Postby srinath » Wed May 03, 2006 4:33 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.


Let me ask you just 1 question for now ...
How long did you do it and what was the tests (urine/feces etc) with DMSA/ALA showing.
Cool.
Srinath.

Tim
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Joined: Sun Mar 05, 2006 9:43 am

Re: Shhh

Postby Tim » Sun May 07, 2006 4:03 pm

quantumerik wrote:
Tim wrote:What's wrong with keeping autistic children the way they are?
Who knows, maybe your daughter will be one of the most famous rocket scientists ever. Remember, Albert Einstein didn't speak until he was four years old and wasn't fluent in his primary language until at least age eight.


Please tell me that wasn't a serious question!

My daughter isn't exactly on track to be a rocket scientist. She is only NOW (at the age of seven) beginning to feed herself and learn simple motor skills and hand-eye coordination tasks (using forks, etc.) She has made GREAT progress in this first month of Lupron + Chelation and she's completely nonverbal. Her injury was extremely severe.

If we don't restore her potential, she's going to live in a group home when I'm too old to care for her... and who the hell is going to pay for that?

Please THINK before you ask that kind of question. If you met my daughter, you'd agree with her need to be "cured." No child should be a storage facility for toxic metals. No child should have chronic measles, rubella and herpes viruses infecting his/her gut. No child should have multiple food allergies or gut inflammation/diarrhea. No child should slip away from being a completely normal kid prior to her vaccines... into the dark abyss of autism just a few days after inocculation.

My daughter is a GREAT kid! But she's struggling and we're struggling... if we can repair the injuries to her body... she can be the healthy child WE GAVE BIRTH TO and be able to choose her own future...have friends... a career... maybe even get married.

Leave her the way she is?

Never. Love her always... of course... but heal her wounded body and starving brain.

Erik


Maybe she's just a late "bloomer". I know an autistic guy who was absolutely bad at mathematics in primary school, but now he's successfully finishing his M.Sc. in computer science with loads of calculus, linear algebra, analysis etc.

He received no "biomedical treatments" at all.

LM
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Postby LM » Sun May 07, 2006 8:59 pm

Let me ask you just 1 question for now ...
How long did you do it and what was the tests (urine/feces etc) with DMSA/ALA showing.
Cool.
Srinath.


and what will revealing this info prove? Are you a qualified expert who can interpret my son's lab results and make further recommendations?

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

That will

Postby srinath » Mon May 08, 2006 10:32 am

LM wrote:
Let me ask you just 1 question for now ...
How long did you do it and what was the tests (urine/feces etc) with DMSA/ALA showing.
Cool.
Srinath.


and what will revealing this info prove? Are you a qualified expert who can interpret my son's lab results and make further recommendations?


The point is not that I claim to be an expert. The point is that you claim to have done everything.
With the tests - I'd use Cutlers counting rules and see if atleast from cutlers point of view he is metal toxic.
Also DMSA+ALA if it has been used for a few months would be showing a good elevated level of metals comming out. I am just wondering if that happened at all.
In any case I would urge you to look at the results and try cutlers counting rules - the test are done already, you have them, no more needles and labs to be done, just take those tests you have and try counting with cutlers rules. Atleast you'll know if cutler thinks he is metal toxic.
Cool.
Srinath.

Tim
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Joined: Sun Mar 05, 2006 9:43 am

Postby Tim » Mon May 08, 2006 2:16 pm

Does anybody on this board actually know what "castration" means?

littlebopeep
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Postby littlebopeep » Mon May 08, 2006 2:35 pm

next
Last edited by littlebopeep on Mon May 08, 2006 2:44 pm, edited 4 times in total.
Fred, 7, NT

Barney, 5, autism

littlebopeep
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Re: Yes

Postby littlebopeep » Mon May 08, 2006 2:42 pm

srinath wrote:
Tim wrote: ... Couldn't resist ...
Cool.
Srinath.






You have made many, many personally negative comments about one too many posters. This comment is not welcome here.

I strongly encourage everyone to 1) preview every post they make, 2) delete all negative references to individuals, 3) delete extraneous negative language, and 4) check the attitude and tone.
Fred, 7, NT

Barney, 5, autism

Casper
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Postby Casper » Mon May 08, 2006 2:56 pm

You know Srinath, that's a crappy comment to make about anyone. As a parent new to biomedical, I have carefully read many of the debates because I want an informed opinion as to what treatments to try with my daughter. I don't think I've ever seen Winnie stoop to personal name-calling though I've lurked here for several months. In fact, she seems to have slowed down since the moderator asked for people to tone things down. I have not however, noticed you extending the same courtesy.

Just curious, do the board rules apply to everyone but you?

srinath
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You know

Postby srinath » Mon May 08, 2006 3:15 pm

You know ... this is the bio medical side.
Posting what worked, or what didn't work or what did what, is what its about. Winnie posts often about how bio medical is BS and yet she has never tried anything. Too many people dont realise that.
Name calling isn't the only form of provocation, and she has done plenty of every other form of provocation.
In short people who haven't tried bio med at all ... shouldn't be giving advice. Unless - there is the heresay part. I heard this did that or what not to so and so ...
Winnie grossly misleads people ... I just want people to be aware of that.
Cool.
Srinath.

Winnie
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Postby Winnie » Mon May 08, 2006 3:22 pm

Yes It happens when you marry a girl called winnie ... ... Couldn't resist ...
Cool.
Srinath.


Awwww, Srinath, that would only happen if Winnie married a Weenie.

Fortunately, I'm not attracted to that type. :wink:
Winnie
"Make it a powerful memory, the happiest you can remember."

srinath
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That

Postby srinath » Mon May 08, 2006 3:38 pm

That is a good one ...
Cool.
Srinath.

Casper
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Postby Casper » Mon May 08, 2006 3:39 pm

Winnie grossly misleads people ... I just want people to be aware of that.


Sorry, I must be a bit confused. How can you possibly justify your comment about her (your extremely personal attack on her) with the lame excuse that you want people to know that in your opinion she misleads others?

srinath
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You need to

Postby srinath » Mon May 08, 2006 3:51 pm

Casper wrote:
Winnie grossly misleads people ... I just want people to be aware of that.


Sorry, I must be a bit confused. How can you possibly justify your comment about her (your extremely personal attack on her) with the lame excuse that you want people to know that in your opinion she misleads others?


You need to look through all her old posts ... and rather impossible to do since she posted as Guest till she had to create an ID.
But the general history is that she used to trash biomed albeit very very politely and after several posts asking her about her experience we find out she never tried any and didn't ever intended to. She also has a mainstreamed 10 year old AKA such a near normal functioning kid that she never needed to.
She started a Home program for ABA and what not and I never trivialised that ... just that in the biomed area her opinions are not based on anything.
I and everyone else is not about to stop someone just because they are saying somehting doesn't work ... Just that someone who's not tried anythign at all, and never intends to ... doesn't need to post it here ... like I said ... her point of view is freely available at every doctors office in the country, and its prettier and in brochure format ... quite nice ... Her views are valuable on the education side ... I will totally follow her plans when the time comes and my son is right for it.
Nothing against her what so ever ... Just need to know where the advice on bio med comes from especially for new parents.
Cool.
Srinath.

Casper
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Joined: Thu Mar 30, 2006 4:53 pm

Postby Casper » Mon May 08, 2006 3:59 pm

Srinath, the question here is how do you justify making such a nasty remark about her and the remark in question has nothing to do with biomedical intervention? I have been lurking for many months (before the time of required registration to post) and have seen her posts.

My question is why make such a personal attack that has nothing to do with biomed and then try to justify it as allowable because you disagree with her beliefs?

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

Postby littlebopeep » Mon May 08, 2006 4:09 pm

I have not known Winnie to dole out any advice, other than "be informed." She calls a lot of claims into question. One needn't have personally tried a method in order to research and comment on the validity of its use.

All the same, Winnie has never personally insulted you. You would do well to follow her example.
Fred, 7, NT

Barney, 5, autism

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Lupron Thread

Postby webmaster » Mon May 08, 2006 4:14 pm

I've gotten more complaints about this thread that any other. I'm inclined to close this thread to debate, unless those who want to keep it open stop attacking each other and take the discussion somewhere new. If there is anything more that is useful to post, please do so. Otherwise, let's close this thread.
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