New article about Baclofen as a treatment for autism

Page 1 of 2 [ 29 posts ]  Go to page 1, 2  Next

Mage
Veteran
Veteran

User avatar

Joined: 10 Oct 2006
Age: 44
Gender: Female
Posts: 1,054

02 Dec 2010, 9:24 am

This has been mentioned before but this Times article was just published and I thought you all should see it.

http://healthland.time.com/2010/12/01/h ... ction-too/

"One night in 2006, Kathy Roberts rushed her autistic daughter, Jenny, to the hospital. Nothing had been able to stop the young woman, then in her mid-20s, from vomiting. Jenny had recently suffered several major seizures and her entire gastrointestinal system was going haywire.

To try to calm Jenny's GI tract, doctors at Massachusetts General Hospital prescribed baclofen, an antispasmodic drug that is also being studied as a potential treatment for alcoholism and other addictions. The drug relieved Jenny's vomiting, but it did something else too — a completely unexpected and welcome side effect."


Given that it's not a mind-altering drug like a lot of the psychiatric meds, and it has very few side effects compared to a lot of the popular treatments like SSRIs, do you think it could be a safe autism treatment? I would be looking for it more for myself than my son, I don't really believe in giving children medications like this before their minds are fully developed. It would just be so wonderful if I could stop mutilating my fingers or pulling on my hair so much, especially in public.

Does anyone have any experience taking Baclofen? Since it's currently out on the market and has been for some time, I thought perhaps someone here might have already taken it.



anbuend
Veteran
Veteran

User avatar

Joined: 5 Jul 2004
Age: 43
Gender: Female
Posts: 5,039

02 Dec 2010, 5:20 pm

I don't really think it's good for the media to tell these stories about one autistic person who just happened to experience some sort of (perceived) improvement right after a certain drug was given to them. Because then everyone rushes out and tries it on their kid regardless of whether it actually does anything useful. And even safer drugs should never be given to people who don't absolutely need them. Things like this need controlled trials, not stories that cause everyone to run to their doctor for an off-label prescription (and since autistic people are almost always "improving", some fairly large chunk of autistic people will just by the nature of autism happen to "improve" while on the drug).

I'm on baclofen for spasticity. And it doesn't change anything autism-related at all for me. Articles like this are irresponsible.


_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams


Ottery
Butterfly
Butterfly

User avatar

Joined: 11 Dec 2010
Gender: Male
Posts: 15

12 Dec 2010, 1:36 pm

I have used baclofen for over a year as has my wife. It is very safe and effective. It stops all sorts of anxiety related symptoms. Info about it is at baclofenuk Lots of people using it successfully are advising on Mywayout forum. Dosage is very important to achieve success.

My own feeling from using it is that it is likely to be a real breakthrough in treatment for a wide range of anxiety related disorders. The only side effect I now feel is one of profound normality and lack of anxiety.

Do, however, go very gently with it and find out as much as you can about it. Keep dosages low and regular, do not increase too rapidly and do not stop treatment abruptly. It does have side effects which do go away but this is a safe but serious drug which has been around for many years and has helped millions of people. Treat it with respect.



liveandletdie
Veteran
Veteran

User avatar

Joined: 19 May 2010
Age: 34
Gender: Male
Posts: 902

12 Dec 2010, 2:54 pm

i dunno anything about it but last poster sounds like some kind of forum advertiser

maybe I am paranoid...


_________________
“It is better to offer no excuse than a bad one.”
― George Washington


nthach
Veteran
Veteran

User avatar

Joined: 28 Feb 2008
Age: 39
Gender: Male
Posts: 1,457
Location: SF Bay Area

12 Dec 2010, 2:55 pm

It's a GABA derivative. I just do yoga for the supposed GABA-centric effects it can do.



Ottery
Butterfly
Butterfly

User avatar

Joined: 11 Dec 2010
Gender: Male
Posts: 15

12 Dec 2010, 5:35 pm

No I am not a forum advertiser. By day I am a prosecutor and in the evenings I care for a seriously ill wife and small child. Take what you want from my post or take nothing. Life is what you put into it not what you take from it. Make your own mind up based on evidence as I have.



pensieve
Veteran
Veteran

User avatar

Joined: 18 Nov 2008
Age: 38
Gender: Female
Posts: 8,204
Location: Sydney, Australia

12 Dec 2010, 6:40 pm

liveandletdie wrote:
i dunno anything about it but last poster sounds like some kind of forum advertiser

maybe I am paranoid...


Maybe you need some baclofen? (jokes)

But seriously it could be good to treat muscle spasms and anxiety. Of which I have both.
But it is spreading a false hope that it could treat autism. I can see some parents thinking 'treat' as 'cure' and not all medications work the same for people. It's not going to be a quick fix drug for autism but treat some symptoms.


_________________
My band photography blog - http://lostthroughthelens.wordpress.com/
My personal blog - http://helptheywantmetosocialise.wordpress.com/


Ottery
Butterfly
Butterfly

User avatar

Joined: 11 Dec 2010
Gender: Male
Posts: 15

13 Dec 2010, 4:19 pm

I found your post very insulting.

A pharmaceutical company employing neurobiologists has conducted successful trials of arbaclofen and people are using Baclofen to treat autism and addiction. So, what part of that is false?

And I missed what part of your experience using this medication or your qualifications entitles you to make such a statement. It MAY be spreading false hope. Or...it MAY be spreading knowledge which MAY help someone.

Do you think you are more intelligent than the other members here and that they are too stupid to make their own minds up? Or are you just expressing an opinion without making any investigation?

Opinions like that are worse than useless. You may dissuade someone from getting help which they desperately need.

What the article goes on to say...and you should think carefully about this...is that the trials were so successful that the US regulators allowed the participants in the study to continue using the medication even though it is not approved. And won't be for two years. So, all false hope is it?!

And, suggesting that there is some problem because some people don't know the difference between a treatment and a cure just shows a retentive mind set.

I hope you found this post as offensive as I found yours
Maybe it will make you and others here think before they start accusing people who are genuinely trying to help others of spreading falsehoods.

Read the posts on the forums I mentioned of people whose lives are being saved by this drug and give people credit for having the intelligence to make their own decisions.



wavefreak58
Veteran
Veteran

User avatar

Joined: 26 Sep 2010
Age: 66
Gender: Male
Posts: 4,419
Location: Western New York

13 Dec 2010, 4:43 pm

Ottery wrote:
A pharmaceutical company employing neurobiologists has conducted successful trials of arbaclofen and people are using Baclofen to treat autism and addiction. So, what part of that is false?


You said you were a lawyer, right? Then what conflates a feeling of false hope to the level of an assertion that the claim made in the article itself is factually false? I hope you demonstrate better reasoning when before a judge. The false hope is that just because a single data point had a positive response doesn't in ANY way imply anything other than that single data point had a positive response. And implying anything else than plays to emotion not fact.

Quote:
And I missed what part of your experience using this medication or your qualifications entitles you to make such a statement. It MAY be spreading false hope. Or...it MAY be spreading knowledge which MAY help someone.


Since this is not a peer reviewed medical journal, but rather an internet forum where hearsay and anecdotal evidence are primary sources of information (caveat emptor in full force), no qualifications are required to offer an opinion.

Quote:
Do you think you are more intelligent than the other members here and that they are too stupid to make their own minds up. Or are you just expressing an opinion without making any investigation.


Unless you have been lurking for a long while, your entire catalog of posts (3 at last count) disqualifies you from making that assessment. Pensieve is definitely not one of the high and might around here.

Quote:
Opinions like that are worse than useless. You may dissuade someone from getting help which they desperately need.


And your opinion is worth?

Quote:
What the article goes on to say...and you should think carefully about this..


Condescension is the last refuge of a weak argument

Quote:

.is that the trials were so successful that the US regulators allowed the participants in the study to continue using the medication even though it is not approved. And won't be for two years. So, all false hope is it?!


Oooo. Amazing beyond all understanding that yet ANOTHER off label use of a medication is found (rhetorical hyperbole for the literal minded among us). There is nothing astonishing or ground breaking about this fact. It happens all the time


Quote:
And, suggesting that there is some problem because some people don't know the difference between a treatment and a cure just shows a retentive mind set.


As in anal retentive? Something you have experience with?

Quote:
I hope you found this post more offensive as I found yours


You were TRYING to be offensive? I thought you were just low on caffeine or something. Well that just proves you are childish.

Quote:
And that it will make you and others her thin before they atart accusung people who are genuinely trying to help others of spreading falsehoods.


What we and others think is that you have an agenda. Even aspies on an internet forum have a few rules of appropriate social engagement. Starting a flame war on your second post violates a big one.

Quote:
Read the posts on the forums I mentioned of people whose lives are being saved by this drug and give people credit for having the intelligence to make their own decisions.


Yeah. Nobody here knows how to do research or draw a well reasoned, evidence based conclusion. I forgot. We're nothing but a bunch of disabled autistics.


_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.


Ottery
Butterfly
Butterfly

User avatar

Joined: 11 Dec 2010
Gender: Male
Posts: 15

13 Dec 2010, 5:17 pm

anbuend wrote:
I don't really think it's good for the media to tell these stories about one autistic person who just happened to experience some sort of (perceived) improvement right after a certain drug was given to them. Because then everyone rushes out and tries it on their kid regardless of whether it actually does anything useful. And even safer drugs should never be given to people who don't absolutely need them. Things like this need controlled trials, not stories that cause everyone to run to their doctor for an off-label prescription (and since autistic people are almost always "improving", some fairly large chunk of autistic people will just by the nature of autism happen to "improve" while on the drug).

I'm on baclofen for spasticity. And it doesn't change anything autism-related at all for me. Articles like this are irresponsible.



Posts like yours are irresponsible.

The article you refer to was published by Time Healthland. It tells of four years of research and trials of Arbaclofen which is a derivative of Baclofen. It goes on to say that Baclofen has had notable success in stopping alcoholics drinking.

Nothing in the article is irresponsible or in any way misleading.

You may not have had any relief from autistic symptoms. For spasticity Baclofen is prescribed at low dose of 10 to 30mg per day. People taking it for addiction are taking varying amounts up to and over 300mg per day. Arbaclofen is 10 times more powerful than Baclofen. Taking either of these drugs is a very serious matter. Most countries only allow prescriptions of up to 100mg per day soi using it at that level is a serious step and people don't do it and doctors would not be prescribing it off licence and above the safe dose limits unless it did work. It is a drug with significant side effects which a lot of people do not like but which do disappear.
The really important discovery mentioned in the article is that the underlying condition which is now being recognised as a major cause of addiction and is treatable with Baclofen, is also a possible cause of autistic type disorders.
I see you quote Donna Williams. She is autistic and an alcoholic! When my wife is sober she has autistic symptoms. Both the alcoholism and the autistic symptoms are helped by Baclofen.



wavefreak58
Veteran
Veteran

User avatar

Joined: 26 Sep 2010
Age: 66
Gender: Male
Posts: 4,419
Location: Western New York

13 Dec 2010, 5:40 pm

Ottery wrote:
Posts like yours are irresponsible.


All the way up to 4 posts. Still not enough to allow such a superior attitude.

Quote:
The article you refer to was published by Time Healthland. It tells of four years of research and trials of Arbaclofen which is a derivative of Baclofen. It goes on to say that Baclofen has had notable success in stopping alcoholics drinking.


So which are we to be impressed with? Baclofen or Arbaclofen?

Quote:
Nothing in the article is irresponsible or in any way misleading.


It's not the article you dolt. It's the way it get presented in forums like this one. Since you are so erudite, surely you know that autistics are regularly bombarded with a steady stream of psuedo science and just plain crap regarding cures. And when someone comes into OUR world (it's called Wrong Planet for a reason) and presents something with a bludgeon, then expects us to roll over like a dog thankful for the belly rub, how should we react? The tail don't wag the dog in these parts.

Quote:
You may not have had any relief from autistic symptoms. For spasticity Baclofen is prescribed at low dose of 10 to 30mg per day. People taking it for addiction are taking varying amounts up to and over 300mg per day. Arbaclofen is 10 times more powerful than Baclofen. Taking either of these drugs is a very serious matter. Most countries only allow prescriptions of up to 100mg per day soi using it at that level is a serious step and people don't do it and doctors would not be prescribing it off licence and above the safe dose limits unless it did work. It is a drug with significant side effects which a lot of people do not like but which do disappear.


You sound like a pharmaceutical rep, not a prosecutor. You want people to listen to you, you need to lighten up. Even this socially stunted Aspergian knows that much.

Quote:
The really important discovery mentioned in the article is that the ane underlying condition which is now being recognised as a major cause of addiction and is treatable with Baclofen, is also a possible cause of autistic type disorders.
I see you quote Donna Williams. She is an alcoholic! When my wife is sober she has autistic symptoms. Both the alcoholism and the autistic symptoms are helped by baclofen.


And here in lies the problem. Conflating the responsiveness of a sub group of autistics to a specific medication to with an indication of the underlying CAUSE of autism is utterly unscientific bollocks. If you give alcohol to an autistic and a non-autistic and they both get drunk, what does that tell you about their underlying neurological differences?
What baclofen does is alter brain chemistry in some way that attenuates symptoms. It should be no surprise that it attenuates anxiety in autistics. It is designed to attenuate anxiety. It doesn't follow that baclofen does any more than treat one of the symptoms of autism. It doesn't even point to a cause of autism, especially since anxiety is common among many psychiatric and neurological conditions.


Quote:
I suffer from severe anxiety, twitches etc. They are hugely improved with Baclofen.


Too bad it doesn't help your disposition.


_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.


pensieve
Veteran
Veteran

User avatar

Joined: 18 Nov 2008
Age: 38
Gender: Female
Posts: 8,204
Location: Sydney, Australia

13 Dec 2010, 5:49 pm

Ottery, you are very good at offending autistics. You do know that we think in a different way? And yes I am retentive. Very very retentive.

I was saying that the article could make parents think they could cure their kids of autism, because a lot of parents have that mindset. Not all mind. And I think it's a very harmful mindset. I'm not against a cure but I think putting hope in something 100+ years away from being achieved in a waste of energy.

Just think before you post with your emotions. I really don't care if I offend you. Trying to be polite is a lot of work. And it's just the internet. Take some time off and do whatever you NT's do. Or do you actually have AS? Would make some sense but again, I don't care.


_________________
My band photography blog - http://lostthroughthelens.wordpress.com/
My personal blog - http://helptheywantmetosocialise.wordpress.com/


Ottery
Butterfly
Butterfly

User avatar

Joined: 11 Dec 2010
Gender: Male
Posts: 15

13 Dec 2010, 5:52 pm

wavefreak58 wrote:
Ottery wrote:
A pharmaceutical company employing neurobiologists has conducted successful trials of arbaclofen and people are using Baclofen to treat autism and addiction. So, what part of that is false?


You said you were a lawyer, right? Then what conflates a feeling of false hope to the level of an assertion that the claim made in the article itself is factually false? I hope you demonstrate better reasoning when before a judge. The false hope is that just because a single data point had a positive response doesn't in ANY way imply anything other than that single data point had a positive response. And implying anything else than plays to emotion not fact.

Quote:
And I missed what part of your experience using this medication or your qualifications entitles you to make such a statement. It MAY be spreading false hope. Or...it MAY be spreading knowledge which MAY help someone.


Since this is not a peer reviewed medical journal, but rather an internet forum where hearsay and anecdotal evidence are primary sources of information (caveat emptor in full force), no qualifications are required to offer an opinion.

Quote:
Do you think you are more intelligent than the other members here and that they are too stupid to make their own minds up. Or are you just expressing an opinion without making any investigation.


Unless you have been lurking for a long while, your entire catalog of posts (3 at last count) disqualifies you from making that assessment. Pensieve is definitely not one of the high and might around here.

Quote:
Opinions like that are worse than useless. You may dissuade someone from getting help which they desperately need.


And your opinion is worth?

Quote:
What the article goes on to say...and you should think carefully about this..


Condescension is the last refuge of a weak argument

Quote:

.is that the trials were so successful that the US regulators allowed the participants in the study to continue using the medication even though it is not approved. And won't be for two years. So, all false hope is it?!


Oooo. Amazing beyond all understanding that yet ANOTHER off label use of a medication is found (rhetorical hyperbole for the literal minded among us). There is nothing astonishing or ground breaking about this fact. It happens all the time


Quote:
And, suggesting that there is some problem because some people don't know the difference between a treatment and a cure just shows a retentive mind set.


As in anal retentive? Something you have experience with?

Quote:
I hope you found this post more offensive as I found yours


You were TRYING to be offensive? I thought you were just low on caffeine or something. Well that just proves you are childish.

Quote:
And that it will make you and others her thin before they atart accusung people who are genuinely trying to help others of spreading falsehoods.


What we and others think is that you have an agenda. Even aspies on an internet forum have a few rules of appropriate social engagement. Starting a flame war on your second post violates a big one.

Quote:
Read the posts on the forums I mentioned of people whose lives are being saved by this drug and give people credit for having the intelligence to make their own decisions.


Yeah. Nobody here knows how to do research or draw a well reasoned, evidence based conclusion. I forgot. We're nothing but a bunch of disabled autistics.



Another uniformed diatribe. Yes, I have a lot of experience with anal behaviour as I have read hundreds of posts like yours made by people who just post because they like to push their own view without knowing what they are talking about and accuse others of spreading false information without any evidence at all to support their views. Just like you have. My first post was in response to a request for information and help. So a couple of people here decided to insult me without even looking into the subject.
You obviously have a problem. I never suggested anything about anyone being disabled. I spoon feed my wife her food when she is able to eat. So don't even think about going there.

And yes I do have an agenda. I am trying to find treatment for my wife who I now realize after years of suffering probably has a form of autism
And....good, I am really glad you said that people here do their research. Maybe future posts by someone will have something useful about what may be a huge medical advance in the treatment of autism, fragile x and addiction instead of off the cuff remarks and insults

I will look forward to reading something reasoned and informed.
When that happens you will see a different response and a different attitude. But I don't intend in the meantime to be nicey nicey with people who insult me while proffering groundless opinions.



wavefreak58
Veteran
Veteran

User avatar

Joined: 26 Sep 2010
Age: 66
Gender: Male
Posts: 4,419
Location: Western New York

13 Dec 2010, 6:02 pm

Ottery wrote:


Another uniformed diatribe. Yes, I have a lot of experience with anal behaviour as I have read hundreds of posts like yours made by people who just post because they like to push their own view without knowing what they are talking about and accuse others of spreading false information without any evidence at all to support their views. Just like you have. My first post was in response to a request for information and help. So a couple of people here decided to insult me without even looking into the subject.
You obviously have a problem. I never suggested anything about anyone being disabled. I spoon feed my wife her food when she is able to eat. So don't even think about going there.



You really need to get over yourself. Most people that are spoon feeding a close relative or spouse don't open an online dialog by bringing such a fact to the fore. Doing so immediately injects a level of emotion into the discourse that belies some other underlying motivations or insecurities. In the modern parlance it is call TMI.

Quote:
And yes I do have an agenda.


Well at least you are honest. I can give you credit for that.

Quote:
I am trying to find treatment for my wife who I now realize after years of suffering probably has a form of autism


And YOU are qualified to make that diagnosis?

Quote:
And....goodm. I am really glad you said that people here do their research. Maybe future posts by someone will have something useful about what may be a huge medical advance in the treatment of autism, fragile x and addiction instead of off the cuff remarks and insults


You fail as soon as you use the phrase "huge medical advance in the treatment of autism". This is hyperbole that invalidates all attempts at reasonable discourse.

Quote:
I will look forward to reading something reasoned and informed.
When that happens you will see a different response and a different attitude. But I don't intend in the meantime to be nicey nicey with people who insult me while proffering groundless opinions.


I doubt you look forward to much other than reading your own pithy and remarkably probing responses to us uninformed and pitiful denizens of this internet backwater.


_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.


Ottery
Butterfly
Butterfly

User avatar

Joined: 11 Dec 2010
Gender: Male
Posts: 15

13 Dec 2010, 6:32 pm

This reminds me of a Monty Python sketch. Is this where people come to have an argument? Oh no. Its where you go to be insulted.

You seem to prefer engaging in rhetoric rather than in the subject of this thread which was........does anyone have experience of using Baclofen

So why do all the other posters here want to undermine a scientific discovery without having read the article and dismiss the idea out of hand?

Oh and yes I am a very good lawyer because I have a reputation which I have gained over the past 30 years of being honest.

I am going to bed now.



wavefreak58
Veteran
Veteran

User avatar

Joined: 26 Sep 2010
Age: 66
Gender: Male
Posts: 4,419
Location: Western New York

13 Dec 2010, 10:57 pm

Ottery wrote:
So why do all the other posters here want to undermine a scientific discovery without having read the article and dismiss the idea out of hand?


One article hardly qualifies as a discovery. This is your problem. You take a single article and expect it to change the world. Hardly scientific.

Quote:
Oh and yes I am a very good lawyer because I have a reputation which I have gained over the past 30 years of being honest.


I don't recall ever hearing a lawyer admit they were a bad one. How is you telling me you think of yourself as a good lawyer supposed to convince me of anything other than your ego is intact?


Quote:
I am going to bed now.


You have balls. Did you ever think of participating in the community a bit before you got all high and mighty?


_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.