Arbaclofen drug for Fragile X, being trialled for Autism

Post Reply New Topic

This one has been around for a while in testing for Fragile X, but is being trialled on kids with Autism as this news article shows
http://www.msnbc.msn.com/id/47630513/ns ... tal_health

Part funded by Autism Speaks.
http://blog.autismspeaks.org/2011/06/23 ... /#comments

Sounds very promising to me.

Yeah! I read about that drug here:

http://www.reuters.com/article/2012/05/ ... II20120531


I wondered what Aspies/Auties thought of it, because I don't know if the attitude about "curebie"-ism extends to drugs intended to just aid with some of the difficult aspects. *shrug*

I'm glad they're focusing on meds that can help with the things that the spectrum person finds detrimental or difficult, instead of just "controlling outward behaviours." Because I shudder when I read about the former go-to drugs for autism...which this article described as "chemical straitjackets." That's just wrong.

But I thought this new class of med sounded really promising too.

I am one of those Aspies who feel insulted at the notion of being cured of my autism - for myself. The fact of the matter is, my autistic daughter, who is in a special ed class, is not as functional as I had been at that age in some academic matters, but at seven is light years ahead of where I had been socially in grade school. I hate to say this, but if there is a drug that can make life easier for my little girl, then I won't deny her the chance to have a happy, successful future. My concern is, is she going to be the same quirky individual with her unique personality that my wife and I, and everyone who knows her, loves?

-Bill, otherwise known as Kraichgauer

In my experience and reading, the right med will not change or dampen a person's personality. It will only alleviate the negative issues.

It just takes time for them (researchers) to make just the right formula to target only the desired neurochemicals, in just the right way.

Physically, we're all just a bag of balanced and (in some cases) genetically imbalanced chemicals, really.

Maybe, as an adult, you can decide if any imbalance(s) caused by your genes is an imbalance in your favour. That is your choice.

But I applaud you on being open-minded about your child's choices and options.

Me...I have been medicated for my ADD and prefer to be, when possible. And if I could try out a life--start a new one--without it, I'd certainly choose to try. I would want to see if I could feel more successful, that way. Because I haven't felt so. I was diagnosed late (mid-twenties) and my self-esteem is...ugh. You know? I'm not sure when in life I won't somehow always feel like a loser, because of my struggle to accomplish what I see so many peers with my same intelligence and education level accomplish. It...I...feel like I certainly stand out, from them--and not in a good way. *hangs head*

I would rip that out and gut that from my life in an instant, if I could.

Actually, I was only diagnosed just a few years ago - while already in my forties! But I did have my suspicions prior to that after my daughter was diagnosed as high functional autistic, and reading up on it, I recognized myself - especially as a kid. And I totally understand low self esteem - not only growing up, but also throughout much of my adulthood. Something about being regarded as mentally slow - even though I was often the smartest kid in class back in school and in college. But I will say this - having been diagnosed with Asperger's has allowed me to make sense of my life, allowing me to know a sense of peace I hadn't been allowed to have for most of my life.

-Bill, otherwise known as Kraichgauer

*nods* Yes, my diagnosis did give me that, too. I agree with what you said 100%.

Glad things are looking up for you, too.

-Bill, otherwise known as Kraichgauer

Knowing the name of one's pain leads to sorting things out.

For many years (I was a child before Dr. Asperger did his thing) I thought I was nutsy fagin. I am, actually, but it has a name now. Now I know why I was bullied in in school. But soft, any blow that does not kill one, makes one stronger.

ruveyn

I'm glad things are working out for us, so far.

-Bill, otherwise known as Kraichgauer

RE: In this article where they say that Arbaclofen:



Interesting that it mentions GABA. GABA is something I'd read about in Dr. Daniel Amen's "Healing A.D.D." for calming (i.e., acting like a "brake pedal" on) certain over-excited brain neurology problems. From what I've read, GABA is available over-the-counter, generally, at health & nutrition stores (at least in the U.S.).

Not that I'd necessarily feel comfortable with just administering my kid (if I had one) GABA without consulting with a neuro doctor...but it makes me wonder: Could just "naturally" flooding the system with extra GABA be of any benefit? -Same principle as some of the other "natural" neurochemical boosters and inhibitors - such as 5-HTP (another over-the-counter supplement - an amino acid which is a natural precursor in the body's own manufacturing process to seratonin) for depression.

*just thinking out loud*

I AM NOT A DOCTOR (naturopathic or otherwise) and NO ONE SHOULD TAKE MY ADVICE as such. Obviously, that could be dangerous.

I'm only curious enough that I wish and hope that some clinical trial out there would study GABA supplementation for potential effectiveness with some autistic spectrum difficulties. I'd be intensely curious as to if the results would show any statistically significant benefit.

I'm excited about anything that can offer a better quality of life.

Some pharmaceuticals can down synaesthesia which can be bad for functioning and they call it a cure I can understand about people who have severe autism and severe or profound learning disability and in diapers as well.

I often benefit from viewing myself and my life experiences in this way. It helps me to not take things too seriously.