Was on this med for about 3 weeks. Did nothing for me, and by nothing I mean: if I were in a clinical trial I woulda thought I was in the placebo group. Not often I get to say a psychiatric med didn't even have the decency to give me a headache as a side effect.
I was given 5mg diazepam 3x a day with aripiprazole because the latter could be "activating". Due to all the anti-benzo campaigns in the UK I tried to avoid taking the diazepam because "diazepam is bad". After the fireplace started talking to me I was swapped onto 600mg quetiapine, and 18 months of side effect hell.
Venlafaxine --> Effexor has to take the branding gold if you ask me. Venlafaxine is a sound you try to push out of your mouth when someone is literally holding onto your tongue, and EFFEXOR is what every other drug wishes they were named. It could have been the OG distracted boyfriend meme.
Love the one-drug takes. The fans are screaming for you to write one on Caplyta, Cap-Lyta, Cap-Ly-Ta! -- as the cheerleaders collapse into a mixed state pile of flesh.
Just started my autistic 10 year old on aripiprazole today, about 2 years after it was first recommended. It seemed like the only alternatives were risperidone and Lamotrigine. It seems like we’ve tried everything. SSRIs, anti-anxiety meds, therapy, therapeutic school setting, completely reworking our parenting. Her behavior can be extreme and I worry that she’s going to get herself arrested or killed. I’ve already lost track of how many encounters we’ve had with the police. If you’re saying it’s a “nope”, what else would you suggest?
Hello Amanda, have you heard of Pathological Demand Avoidance or Persistent Drive for Autonomy (PDA)? It is a type of autism that most basically means most normal activities and life demands can put someone's nervous system involuntarily in fight or flight. It is not something studied in the US, but it is being acknowledged and researched in Europe, so I imagine the US will catch up in 15 to 20 years ;)
My 7 year old son was originally diagnosed with anxiety and then later got the ADHD and autism labels. Interventions help but only temporarily. It's like we are parenting in quicksand. His BCBA brought up PDA, and it describes my son very well. One day he can do something successfully, and the next day the demand of the same task sends him into a violent outburst.
Not saying this is the answer, but it might be worth looking up. At Peace Parents is a website and youtube channel by Casey Erlich, PhD. Another person you can look up is Mona Delahooke, PhD.
Best of luck with your daughter! Solidarity from a fellow parent also worried about law enforcement involvement! If you want my contact info, let me know.
Hi, I think we might be connected on FB! Didn’t want to go into whole history but yes kiddo is PDA (as well as having some additional challenges) and those are good resources. And if others are reading I’d add PDA Society UK and PDA North America, Dr Ross Greene’s website and CPS methods. Those all helped with the “restructuring our whole parenting” part but we are all still struggling.
It is so hard! You are doing a great job! The only other thing I can shout out is occupational therapy. Interventions have come in and out of vogue, but things like deep pressure and heavy work are mainstays when he is not in his thinking brain. In our n of 1, OT > psychotherapy by a longshot!
We haven't even fully restructured our parenting yet because half of the parenting unit still has some doubts! My husband accepts PDA as a concept but does not fully accept it in the context of our son. When things get bad, my husband thinks my son is some mastermind, being an a-hole on purpose. When really, our son is just trying to make his nervous system feel safe. I am taking my husband to our state autism conference this spring. I went alone last year and couldn't do justice explaining everything I learned to my husband. Fingers crossed he will listen more to the experts than he does to me!
Given that I've never met your child, it would be inappropriate to say. What I can say is that a lot of individuals are in this situation, looking for some help, some hope. Regulators are in the position of, unenviably, evaluating data on options that are not necessarily bringing all of the hope and none of the risk. I think looking at Abilify, what the data says that it works in the short term, but doesn't necessarily work better than placebo over the long-term, and has side effects take years to reach their full impact. If it's helping your kid, it's helping your kid. Does it help kids broadly, for a little while. I'm counting on these drugs at a population level, not an individual level. And not at the individual level of a child I've never met, and a family that struggling, and might be helped. That's the job of anyone's individual doctor.
I took Abilify for about 6 years. I believe it was helpful to me in that time. I also believe it caused me harm, and that has to be balanced against the benefits that it offered.
Not only is your family in this position, but I was in the same position your family is in. I chose to take the medication for the time I took it. And I chose to keep looking for other options, along with my doctor, to find what would be more helpful and less harmful. I think it's incumbent upon scientist like myself to recognize that anything we loose into the world risks and benefits, and any thing we do to help we have side effects. But not helping has its own side effects.
These are difficult choices. I do not envy what your family has been through. I really hope it's helpful.
I will briefly note there's early data on transcranial magnetic stimulation and autism, and I look forward to there being more, but there's not enough yet to recommend it As a first treatment.
I'm hopeful that we have more data, and more treatment soon. Sometimes we have to make do.
Thank you for the thoughtful response! I’m keeping an eye out for TMS for kids but I haven’t found any place that does it or any studies we could join. Do you know of anything?
None of this is easy. I am
Sorry for what you went through
Was on this med for about 3 weeks. Did nothing for me, and by nothing I mean: if I were in a clinical trial I woulda thought I was in the placebo group. Not often I get to say a psychiatric med didn't even have the decency to give me a headache as a side effect.
I was given 5mg diazepam 3x a day with aripiprazole because the latter could be "activating". Due to all the anti-benzo campaigns in the UK I tried to avoid taking the diazepam because "diazepam is bad". After the fireplace started talking to me I was swapped onto 600mg quetiapine, and 18 months of side effect hell.
Interesting article. Thank you.
Thanks for reading
Venlafaxine --> Effexor has to take the branding gold if you ask me. Venlafaxine is a sound you try to push out of your mouth when someone is literally holding onto your tongue, and EFFEXOR is what every other drug wishes they were named. It could have been the OG distracted boyfriend meme.
https://open.substack.com/pub/thefrontierpsychiatrists/p/effexor?r=1ct8f&utm_campaign=post&utm_medium=web
Love the one-drug takes. The fans are screaming for you to write one on Caplyta, Cap-Lyta, Cap-Ly-Ta! -- as the cheerleaders collapse into a mixed state pile of flesh.
Just started my autistic 10 year old on aripiprazole today, about 2 years after it was first recommended. It seemed like the only alternatives were risperidone and Lamotrigine. It seems like we’ve tried everything. SSRIs, anti-anxiety meds, therapy, therapeutic school setting, completely reworking our parenting. Her behavior can be extreme and I worry that she’s going to get herself arrested or killed. I’ve already lost track of how many encounters we’ve had with the police. If you’re saying it’s a “nope”, what else would you suggest?
Hello Amanda, have you heard of Pathological Demand Avoidance or Persistent Drive for Autonomy (PDA)? It is a type of autism that most basically means most normal activities and life demands can put someone's nervous system involuntarily in fight or flight. It is not something studied in the US, but it is being acknowledged and researched in Europe, so I imagine the US will catch up in 15 to 20 years ;)
My 7 year old son was originally diagnosed with anxiety and then later got the ADHD and autism labels. Interventions help but only temporarily. It's like we are parenting in quicksand. His BCBA brought up PDA, and it describes my son very well. One day he can do something successfully, and the next day the demand of the same task sends him into a violent outburst.
Not saying this is the answer, but it might be worth looking up. At Peace Parents is a website and youtube channel by Casey Erlich, PhD. Another person you can look up is Mona Delahooke, PhD.
Best of luck with your daughter! Solidarity from a fellow parent also worried about law enforcement involvement! If you want my contact info, let me know.
Hi, I think we might be connected on FB! Didn’t want to go into whole history but yes kiddo is PDA (as well as having some additional challenges) and those are good resources. And if others are reading I’d add PDA Society UK and PDA North America, Dr Ross Greene’s website and CPS methods. Those all helped with the “restructuring our whole parenting” part but we are all still struggling.
It is so hard! You are doing a great job! The only other thing I can shout out is occupational therapy. Interventions have come in and out of vogue, but things like deep pressure and heavy work are mainstays when he is not in his thinking brain. In our n of 1, OT > psychotherapy by a longshot!
We haven't even fully restructured our parenting yet because half of the parenting unit still has some doubts! My husband accepts PDA as a concept but does not fully accept it in the context of our son. When things get bad, my husband thinks my son is some mastermind, being an a-hole on purpose. When really, our son is just trying to make his nervous system feel safe. I am taking my husband to our state autism conference this spring. I went alone last year and couldn't do justice explaining everything I learned to my husband. Fingers crossed he will listen more to the experts than he does to me!
Given that I've never met your child, it would be inappropriate to say. What I can say is that a lot of individuals are in this situation, looking for some help, some hope. Regulators are in the position of, unenviably, evaluating data on options that are not necessarily bringing all of the hope and none of the risk. I think looking at Abilify, what the data says that it works in the short term, but doesn't necessarily work better than placebo over the long-term, and has side effects take years to reach their full impact. If it's helping your kid, it's helping your kid. Does it help kids broadly, for a little while. I'm counting on these drugs at a population level, not an individual level. And not at the individual level of a child I've never met, and a family that struggling, and might be helped. That's the job of anyone's individual doctor.
I took Abilify for about 6 years. I believe it was helpful to me in that time. I also believe it caused me harm, and that has to be balanced against the benefits that it offered.
Not only is your family in this position, but I was in the same position your family is in. I chose to take the medication for the time I took it. And I chose to keep looking for other options, along with my doctor, to find what would be more helpful and less harmful. I think it's incumbent upon scientist like myself to recognize that anything we loose into the world risks and benefits, and any thing we do to help we have side effects. But not helping has its own side effects.
These are difficult choices. I do not envy what your family has been through. I really hope it's helpful.
I will briefly note there's early data on transcranial magnetic stimulation and autism, and I look forward to there being more, but there's not enough yet to recommend it As a first treatment.
I'm hopeful that we have more data, and more treatment soon. Sometimes we have to make do.
Thank you for the thoughtful response! I’m keeping an eye out for TMS for kids but I haven’t found any place that does it or any studies we could join. Do you know of anything?