Should our family join a clinical trial?

[tree]

This particular diuretic's off label use has been found, according to the results cited in
various articles, to be of use in reducing "ASD core symptoms".

Spoiler: QUOTE

Autism and prevalence of seizures go hand-in-hand (Besag, 2017). The seizures in patients with autism are often treatment-resistant (Sansa et al., 2011). High [Cl−]i makes GABA excitatory, and was proposed to be the basis of the contradictory actions of PB in autistic patients with seizures (Lemonnier et al., 2012). Based on these hypotheses, reducing the [Cl−]i via BTN proved efficacious in an animal model of autism using valproic acid exposure (Tyzio et al., 2014). In a commentary response to this study, however, it was noted that it is premature to consider BTN as a prenatal intervention suitable for ASD due to the lack of proper technical tests and failures to assess the long lasting modifications (Bambini-Junior et al., 2014).

In three separate clinical trials where BTN was administered to patients with autism ranging from infancy to adulthood, BTN significantly improved Childhood Autistic Rating Scale (CARS) scores and attenuated the severity of the disorder overall, with no major side effects other than diuresis (Lemonnier and Ben-Ari, 2010; Ben-Ari, 2017; Lemonnier et al., 2017). In a recent study, BTN given to a subset of the patients with autism showed the normalization of amygdala activation upon eye contact (Hadjikhani et al., 2018) (Figure 1C), long-after cessation of the BTN therapy suggesting permanent and corrective alterations to the underlying circuits.

Off-Label Use of Bumetanide for Brain Disorders: An Overview

 

[Autistamatic]

@Chris_uwd

I have asked for information about bumetanide from the wider autistic community elsewhere. I have had some feedback already but I'll report back once I've got a fuller picture. There will inevitably be some who have taken it for it's intended purpose so will have an idea of any benefits it may or may not have regarding their functioning capacity.

In the meantime - I'll tag @Bolletje who as a medical doctor is better equipped than most of us when it comes to any questions regarding medication.

 

[Chris_uwd]

This particular diuretic's off label use has been found, according to the results cited in
various articles, to be of use in reducing "ASD core symptoms".

Spoiler: QUOTE

Autism and prevalence of seizures go hand-in-hand (Besag, 2017). The seizures in patients with autism are often treatment-resistant (Sansa et al., 2011). High [Cl−]i makes GABA excitatory, and was proposed to be the basis of the contradictory actions of PB in autistic patients with seizures (Lemonnier et al., 2012). Based on these hypotheses, reducing the [Cl−]i via BTN proved efficacious in an animal model of autism using valproic acid exposure (Tyzio et al., 2014). In a commentary response to this study, however, it was noted that it is premature to consider BTN as a prenatal intervention suitable for ASD due to the lack of proper technical tests and failures to assess the long lasting modifications (Bambini-Junior et al., 2014).

In three separate clinical trials where BTN was administered to patients with autism ranging from infancy to adulthood, BTN significantly improved Childhood Autistic Rating Scale (CARS) scores and attenuated the severity of the disorder overall, with no major side effects other than diuresis (Lemonnier and Ben-Ari, 2010; Ben-Ari, 2017; Lemonnier et al., 2017). In a recent study, BTN given to a subset of the patients with autism showed the normalization of amygdala activation upon eye contact (Hadjikhani et al., 2018) (Figure 1C), long-after cessation of the BTN therapy suggesting permanent and corrective alterations to the underlying circuits.

Off-Label Use of Bumetanide for Brain Disorders: An Overview

Thank you.

 

[Chris_uwd]

@Chris_uwd

I have asked for information about bumetanide from the wider autistic community elsewhere. I have had some feedback already but I'll report back once I've got a fuller picture. There will inevitably be some who have taken it for it's intended purpose so will have an idea of any benefits it may or may not have regarding their functioning capacity.

In the meantime - I'll tag @Bolletje who as a medical doctor is better equipped than most of us when it comes to any questions regarding medication.

This is really kind of you, thank you for making such an effort for us.

 

[Aspychata]

Sometimes kids just go thru stages. Everybody gets upset about kids not functioning at the top level of their game, but they are kids, and mature mentally, emotionally at different times. As a homeschooling parent, l was able to guage when to bring things to the educational table to keep her interested. I was letting her dictate by letting her write as much as she wanted. By the time she walked into public school at 7th grade, she was depressed, they were so far behind, the task of dumbing down in the mid-west school completed.

Needless to say, she went to online school after that, until hs. Good luck with your daughter, but please consider yourself and what you had issues with at the same age. Guess l feel strongly about not medicating her. l hope you are able to examine what you perceive as her limitations. Maybe you can examine your beliefs a little closer and see are these really limitations or just a bored and confused child in our school system?