Congratulations to BB for 20 years of outstanding help from amazing support people.

[[Da...]]

I am currently tapering my Autistic adult son, who is nonverbal as well.  It’s been tricky monitoring symptoms, but we’re going slow and so far so good.  Issues started in July 2023 while on an AD and AP.  Due to medical negligence, and me not knowing any different he was rapidly tapered off 20 mg of Abilify and 40 mg of Cipralex ( which is double the recommended maximum dose). The taper was due to significant side effects. I was shocked that no one in the medical community questioned the dosage of Cipralex until we ended up in ER., and the psychiatrist on call caught it.  The rapid taper destabilized him completely, with severe Akathesia and insomnia, along with bizarre tics and behaviours.  A specialist in Autism convinced me to put him on clonazepam in December.  It didn’t help at all.  But due to “ fear” I continued.  Finally in April they were able to stabilize him on olanzapine. In  May I started his taper from clonazepam. I have educated myself by watching YouTube videos, reading the Ashton manual and The Maudsley Deprescribing Manual, and of course Benzobuddies.  I was not going to let him go through another taper like the previous, because I know better now. 
 

This brings me to my point.  After decades of data, and the substantial information available,  WHY do we still see the medical community struggling with deprescribing, and over prescribing these psych medications, especially benzodiazepines.  I am shocked at the dangerous and inconsistent medical advice that is still being provided and I’m finding it very hard to trust doctors or pharmacists now, without doing my own research too.  

Anyway, I’m grateful to the Benzobuddies and to all who support the community.  I kind of fly under the radar and don’t participate or post much, but believe me I love reading all the posts.  
 

Thanks
 

 

 

[[Co...]]

Hello @[Da...]

Thank you for your post and comments about BenzoBuddies.

I think there is a general dismissive attitude within medicine when it comes to patients taking medications for psychiatric disorders. If there is a problem, there can be a knee-jerk reaction from some (but not all) doctors to assume it is manifestation of the psychiatric condition. Of course, it is sometimes the case. But the doctor should be open to either scenario.

And yes, even though the downsides and dangers of benzodiazepines are now firmly established, they are still often over-prescribed. Then, there is a newer problem phenomenon: doctors (often a new doctor to the patient) deciding that the patient should be yanked of benzodiazepines in short order. This is the result of some doctors understanding that benzodiazepines should not be routinely prescribed indefinitely, but with an abject failure to understand the problems associated with withdrawal. And if the new draft guidelines from ASAM are not radically altered and end up being adopted for the deprescribing of benzodiazpines, the situation will become a whole lot worse.

Benzodiazepine Tapering (asam.org)

[[Da...]]

2 hours ago, [[C...] said:

Hello @[Da...]

Thank you for your post and comments about BenzoBuddies.

I think there is general problem within medicine when it comes to patients taking medications for psychiatric disorders. If there is a problem, there can be a knee-jerk reaction from some (but not all) doctors to assume it is manifestation of the psychiatric condition. Of course, it is sometimes the case. But the doctor should be open to either scenario.

And yes, even though the downsides and dangers of benzodiazepines are now firmly established, they are still often over-prescribed. Then, there is a newer problem phenomenon: doctors (often a new doctor to the patient) deciding that the patient should be yanked of benzodiazepines in short order. This is the result of some doctors understanding that benzodiazepines should not be routinely prescribed indefinitely, but with an abject failure to understand the problems associated with withdrawal. And if the new draft guidelines from ASAM are not radically altered and end up being adopted for the deprescribing of benzodiazpines, the situation will become a whole lot worse.

Benzodiazepine Tapering (asam.org)

 

[[Da...]]

Thanks for your reply and the link to ASAM.  I couldn’t agree with you more, about the guidelines, and how much worse it could get.  

I’m still at a place of shock, that after decades of concerns with these classes of drugs, the progress to improve guidelines and provide better treatment to patients who are suffering from the effects has progressed very little.
 

It scares me that currently the information being provided on psych meds by the medical community is inconsistent and has wide gaps in their advice on the side effects and withdrawal strategies. 

Prior to our experience, I had no clue how dangerous psych meds could be if not properly prescribed and monitored for adverse redactions.  So many stories of people going cold turkey, because they didn’t know better.

I am truly grateful for the doctors who are willing to learn and listen, and very grateful for people associated with your organization for pioneering the cause. 
 

[[vo...]]

On 22/09/2024 at 19:18, [[D...] said:

I am currently tapering my Autistic adult son, who is nonverbal as well.  It’s been tricky monitoring symptoms, but we’re going slow and so far so good.  Issues started in July 2023 while on an AD and AP.  Due to medical negligence, and me not knowing any different he was rapidly tapered off 20 mg of Abilify and 40 mg of Cipralex ( which is double the recommended maximum dose). The taper was due to significant side effects. I was shocked that no one in the medical community questioned the dosage of Cipralex until we ended up in ER., and the psychiatrist on call caught it.  The rapid taper destabilized him completely, with severe Akathesia and insomnia, along with bizarre tics and behaviours.  A specialist in Autism convinced me to put him on clonazepam in December.  It didn’t help at all.  But due to “ fear” I continued.  Finally in April they were able to stabilize him on olanzapine. In  May I started his taper from clonazepam. I have educated myself by watching YouTube videos, reading the Ashton manual and The Maudsley Deprescribing Manual, and of course Benzobuddies.  I was not going to let him go through another taper like the previous, because I know better now. 
 

This brings me to my point.  After decades of data, and the substantial information available,  WHY do we still see the medical community struggling with deprescribing, and over prescribing these psych medications, especially benzodiazepines.  I am shocked at the dangerous and inconsistent medical advice that is still being provided and I’m finding it very hard to trust doctors or pharmacists now, without doing my own research too.  

Anyway, I’m grateful to the Benzobuddies and to all who support the community.  I kind of fly under the radar and don’t participate or post much, but believe me I love reading all the posts.  
 

Thanks
 

 

@[Da...] Thank you for sharing your son's story. I am dealing with BIND myself and also have an 11 year old non-verbal autistic granddaughter. I am paying close attention to the types of medications she is prescribed out of concern for her having to potentially go through being tapered off of them down the road. She won't be able to express how the withdrawal symptoms would affect her and that really concerns me knowing what I am going through myself. 

Also, can you share why you are taking your son off of medications? 

Thanks.

Edited 2 hours ago by [vo...]