Video discussing risks and lack of long-term benefits in using ADHD meds

[kbutton]

His impulsivity is high and fast-paced.  It's not even necessarily repeated, predictable behaviors.  It will just be flash, the idea or whatever, and it's HAPPENING, with no filter, no pause, no ability to stop it with my words.  Kinesthetic, automatic, superfast.  And I don't even mind.  Like, to me, home is where you get to be yourself.  I don't allow damage, but I don't have picky rules about the couch, where we run, anything.  

 

What Joyce Show's book was saying (and what Geodob seems to be saying) is that this impulsivity is in a part of the brain.  So I just keep thinking that if we can target so many other parts of the brain, it should not be impossible to target this.  I'm just not having brilliant moments or success figuring out how.  But it ought to be possible.  And the word is *inhibition*, which I think is the opposite of impulsivity.  So he either is responding impulsively or inhibiting that response.  Just need to google it some more.

 

This might sound horrid to you, but do you have a big enough house that you could do some limiting in certain areas to see if working on that helps?

 

Also, you say that you don't allow damage--how does he inhibit in a way that he doesn't cause damage? I mean, my brother is NT, and one of his good friends was NT, but EVERY TIME they played inside, something got broken. If your son can inhibit damage, what is just one more step to inhibit a specific activity?

 

In case it's sounds draconian, I am picturing baby steps, not a sudden snowstorm of things he's not allowed to do. 

 

I agree that people need to be themselves at home, but where each family draws the line is fairly arbitrary. I don't let me kids run in the house. They don't run in my parents' house. It's not safe for the other people who live there. Their house is big, but mine is on the small side. We have no basement. If they want to run, they must go outside. My parents have stuff in their basement, so they must go outside there too. That's a pretty typical rule. Applying it to one floor of your home might be an option. Or, you might find something else that fits your parenting and family style better to make as a rule. Ideally, you want rules that make sense, but since rules that make sense to us don't make sense to these kids sometimes, we just need to expect compliance. I don't think that playing a game with certain rules is any less arbitrary than saying to not run int he house (or the hall, or this room). A game is just a more fun way to introduce it. And, even when reasoning skills are present, rules often save our bacon--my son has thanked us before for putting the brakes on things with him because he KNOWS HE CANNOT STOP on his own without someone enforcing it. 

Edited January 22, 2016 by kbutton

[PeterPan]

nt

 

 

 

Edited January 23, 2016 by OhElizabeth

[kbutton]

Alas, I have no clue why I would tell him not to run in my house.   :lol:   

 

Compliance and impulsivity aren't really the same anyway.  

 

See, I see rules as being a way to measure impulsivity. If they don't have to rein themselves in relative to a rule, then I am not sure what you measure it against. Simon Says is all about inhibiting a response to an arbitrary rule. 

 

People set personal rules to inhibit their own impulsivity as well. It is related to self-control too, right? 

 

So, I don't think compliance is always the same, but if you want something really bad, complying means you have to not be impulsive.

 

If people ran routinely in my house, we'd have ED visits. People get hurt that way or at least run over.

[PeterPan]

You could run a tunnel from your back door to another spot, sort of like a hamster run.

 

 

Edited January 23, 2016 by OhElizabeth

[Lecka]

You have a 7-year-old being too physical with a 16-year-old, though.

 

For me -- it is not an option to let that be a lower priority. I have a twin sister and an older son close in age who isn't going to just put up with things indefinitely.

 

It is just so far from apples to apples.

 

I have to enforce some things just bc my son is close in age and size to his siblings. It means it is just something where this determines my options. I don't really get to have a preference or opinions the way I would if there were no sibling around of a similar size and weight.

 

Bc what is too physical but nobody is getting hurt, in my house might be somebody, if not hurt, at least really upset and unhappy and not having their needs met. I have to think about two other little kids getting knocked over or lovingly strangled, and it is just not okay for them, so it is not something I am able to be more casual with.

 

Which -- this is just part of having my kids be close in age. I think I would like to be more casual, but I also think it is good for my son to have some higher expectations or else, if he is sensory seeking he can be re-directed and that is a good choice for him too.

 

But I think a lot of things for him are just understanding what is acceptable behavior. He is not impulsive. He just does not have an instinct for picking up on signs that people don't like things, I think. It is not the same as being impulsive, and it makes it make more sense to want to try to educate him or at least redirect him. He is very easy to redirect right now, it is like he is happy to do things a better way if he gets that guidance.

 

Like -- he is much better now, but we have had so much work for him to understand how to tell when the dog doesn't like things he does. And we waited until this year to get a dog, bc we thought he would be able to understand how to treat a dog. And, he does do a good job now, but it was harder and longer than I thought, and I don't think it is a choice to just stand back and let him harass the dog. Thank God our dog loves him and puts up with a lot, too. But I need him to make a good choice wrt the dog or be separated from the dog, no matter what is going on with him.

 

So this adds up to a lot of lines in the sand for behavior I allow, even if I might only state something is not okay and redirect or offer a choice. I am not coming across like a strict parent at all, but I just can't allow some behavior.

 

But my kids are okay to run most of the time. Nobody has been hurt. I just make them leave the kitchen or sometimes send them outside.

 

If somebody would be knocked over, I would not allow it. My kids are similar sizes and also smaller, and it has not been an issue for us.

Edited January 23, 2016 by Lecka

[Lecka]

Separately, another time my son got observed at pre-school for some physical, unwelcome behavior, the specialists said "he is trying to engage but he does not have the skills to engage, so teach him an appropriate way to engage.

 

It seemed bad, but then, it turned out to be really exciting that he wanted to engage with the other children.

 

I feel like -- who knows what they will say when he gets observed. But this is one possibility at least, and kind of a positive even while it is a negative.

[Guest]

nm

Edited February 10, 2016 by Guest

[Mom28GreatKids]

I think we have a little of what Lecka says going on. DS is the littlest, and 4 yrs younger than the next DC. So we were allowing some behavior because he wasn't going to hurt anyone. And it was going OK, but now I think it is time to teach him more appropriate ways to engage. He does a lot of things to engage an older sibling that does not work for another 3 yo, so we are working at home to teach behaviors that are more acceptable in a peer setting, like his Sunday School class.

 

I am also seeing that he is responding better to more boundaries and stricter enforcement of some rules. Like he used to just lose it when I would correct, redirect, or establish a boundary, and then it would take 45 min to get him back. So, my natural tendency was to avoid. Now that he seems to better handle it, I find that I am seeking out opportunities to teach him boundaries and redirect him so he learns that it is ok.

 

One of his biggest problems at Therapy is handling when a therapist puts limits on him. Like, no we are not doing that activity right now, we are finishing this. He used to flip out, but he is getting better. He always hated cleaning up one thing before the next, but it was starting to drive me nuts to have to wait til he was out of the picture to clean up toys. Last night I was like, we are gonna clean this up before he goes to bed. So we did. I made it a contest to see who could clean up the most duplos is 30 sec. He was all over that.

 

I think the bottom line is, we all need to do what is best for our situation. What I do is different with 8 DC than OhE with 2 or Lecka with hers really close in age. And that will change, in time, whether the DC are NT or SN. I used to be super strict about bed time when every one was little, but that has changed since 5 of the kiddos are over 10 now. I have lots of kids up past 10 most nights. Things change. I am hoping as little dude matures, we learn what keeps him regulated, etc., he will be able to handle more and more limits from more and more sources. I watches the ADHD and emotion video Anna's Mom shared in another thread. Wow. That was very interesting and very much what we are dealing with right now. Thanks for linking that, BTW.

 

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[Lecka]

I struggled a lot with enforcing sharing at that age. It is hard when two kids are the same age and like the same toys, and then if there is grabbing, I either allow it and have a little girl looking at me like "why is that okay?" Or I don't allow it and have heartbroken sobs and a very, very long meltdown.

 

So advice I got was I just can't allow it. It is not okay for my daughter to be treated this way and learn this is how the world works.

 

So, I did my best.

 

But more recently I have been very surprised to get a lot of feedback that my son shares better than expected and is able to avoid a lot of problems related to not being able to handle sharing. I never expected to hear that, to say the least.

 

He has gotten a lot of practice, though.

 

I think it did make pre-school easier for him in that it wasn't the only place he was required to share -- he has to share at home, too, so that wasn't a reason for him to dislike pre-school.

 

For a lot of kids with difficulty sharing, it makes it harder for them to be in any situation where there is a general expectation of sharing toys (or at least not grabbing toys away from other kids) or using a group toy at the same time and things like that. I have to look on the bright side and say, as difficult as it can be to have 3 kids close in age sometimes, at least this has turned out to be helpful.

 

Now my daughter is mature enough (at 7 1/2) that she is going to just find another toy to play with if she sees her brother really wants what she has. Or she starts something with him they can do together. But I think it is only in the past year that she has gotten mature this way, and my son has gotten a lot more cooperative and more flexible, too at the same time. I hope it will last.

Edited January 23, 2016 by Lecka

[PeterPan]

Anna's Mom, I saw your question and will be back to answer when I get the chance. We had a bit of a medical emergency with my youngest today. It will most likely lead to minor surgery but he is fine health wise. Thankfully! Back when I am more sane.

Oh dear, I hope he's ok!  

[PeterPan]

Lecka, we've been working quite a bit on this, requiring absolute responses to ensure safety.  What we don't have right now is the instruction and thought process that can keep it from repeating, but I do have absolute, required responses from both parties to ensure safety.  I also don't think it's simply one-sided.  It's nice to say problems wouldn't occur if a sibling did not exist, but reality is the sibling DOES exist and he exists for our learning and growth.  One of the challenges with a big age gap is that kids have their own opinions about what ought to be done, how things ought to be handled.  I had to step in and say no, this is what I require, it is the absolute response, this is how it will be.  And it's a safety first kind of thing, obviously.  I also don't feel like I'm currently connected with any materials that let me get deeper on that behavior. They may exist, but I don't have them right now.  It seems like everything I find in that vein is very cognitive and targeted at older kids.

 

M28, those are hard things.  School is very conducive to picking up in ways that home is not.  At home we don't have a custodian coming to sweep the floors.  At home we want to leave things out to show Daddy or because they make us happy to look at them.  Or because we don't want to transition and move on, lol.  I think the challenge is always how much energy we can give to that, whether we have structures to make that easy and within reach, etc.  I find my ds needs extra help, because even basic things overwhelm him like sorting.  So, for instance to sort a basket of laundry and put the socks in the sock bin, the underwear in the underwear bin, this is very overwhelming.  So if the dc has pulled out multiple bins of toys, sorting them out could be an overwhelming, monumental task.  So then picking up goes back to how they play, and that goes back to how we supervise and what we can supervise, how we choose to supervise.  

 

With my dd, I literally kept every single toy up in bins on a high, high shelf, I kid you not.  She could only have one bin at a time.  She comes back to me now and laments how horrible it was.  But we had no picking up problems, kwim?   :lol:  So with ds, I have bins on shelves such that he can play, and I do not currently enforce any rule about one bin at a time.  As a result, he has creative play across boundaries.  Positive spin for, he mixes up toys.   ;)  Can he pick that all up by himself?  Obviously not.  The simple act of sorting is overwhelming to him.  Yes, a game/race approach is highly effective here.  Breaking things into steps/chunks is effective here.  I've spent about a year now, maybe longer (I lose track) teaching him to sort and put away his laundry.  To me that's something that is really important, a life skill, and I've put a LOT of energy into developing it.  He has a visual schedule.  We go in the same order every time.  When we started, I was doing it mostly and he was along to learn.  We've done it long enough that I fade a bit now, like I might get him started, ask him what the next step is, and go do something and come back in two minutes to see if he got it done.  

 

So could I apply that breaking into steps and lowering stress approach to our picking up?  Interesting.  What I do is I have one toy drawer upstairs, a toy box downstairs (both of which are for miscellaneous toys), and then a row of shelves/bins, 6 super large and 6 medium.  Those hold each type of thing, like all the hexbugs or all the blocks or whatever.  So I'm just thinking out loud here, like hmm that would actually work.  That teaching process of a visual schedule for the steps, clear locations in order, working through the steps in order, and doing it with him consistently, that works.  And, you know, picking up ONCE a week would be a really laudable goal.  Like I think ONCE a week would be better than nothing, kwim?  And dh sort of enforces that, simply because he likes the house picked up on Sunday night.  But we haven't been bringing in that level of support and instruction.  It's more like here's the room, go pick it up rogue child.  Doesn't work so well, lol.  Visual schedules, steps, working together, learning the steps and then fading, that  works with him.  To me, I want my goals to be so supported that it's like NO BIG DEAL.  I don't like meltdowns and bad memories over something so basic.  It's just not necessary.  I have those kind of bad memories from being a kid, and I'm like WHY did they do it that way??  It didn't have to be that way.  It could have been fine.  I was just overwhelmed.  So to me, I'd rather not even GIVE the task and just let it be messy than to set it up in a way that's overwhelming.  Just me.

 

I'm reading this book "You're Going to Love This Kid!": Teaching Students with Autism in the Inclusive Classroom, Second Edition  He has a whole chapter on positive attitudes, and how we, as teachers of our kids, are either going to see behaviors from a negative perspective or look for the positive in them too.  He talks about things he was willing to let go, things that didn't bother him as a teacher, that really bugged other teachers.  He talks about teachers in one class not being bugged by behaviors that really bugged a teacher in a different class.  It's an interesting book overall, with lots of insight to what teachers are trying to do with environment, with social, etc. etc. in the schools.

 

Edited January 23, 2016 by OhElizabeth

[nature girl]

It's interesting, I have this challenge with Anna as well. It's such an ADHD thing, not being able to clean up because it's BORING, and so I'll direct her to pick up Legos, she'll pick up ONE and then be distracted and go off doing something else. Whatever she's finished playing with gets dropped right there, and clothes get left all over her bedroom floor. She loves art, so there are always scraps of cut paper on the floor. Add to that the elaborate structures she creates with Magformers or K'Nex that she doesn't want to put away because they become part of pretend play...

 

I used to demand she clean with me, and the whole thing would get extremely upsetting, both of us frustrated. Until...I finally gave up. I hated the struggle and the arguments, and it just didn't feel worth it. So now I clean myself every 2-3 days, occasionally I'll ask her to help but her help is minimal. And I have this ongoing argument in my head. Am I doing her a disservice by not enforcing cleaning rules? Will she grow up to live in a perpetual rat's nest because she doesn't have the habit of picking up after herself and is used to playing in this kind of chaos? (And really, if that's her personality--and I DO think it's part of ADHD--is there anything I can do to change that anyway?) I keep thinking it'll get better as she gets older and more self-directed, and I can enforce then, but really, how hard is it going to be to enforce compliance from a teenager for tasks she hates? Sigh...I just don't know, I feel like I'm choosing between two evils, and don't know if I've made the best choice or if there's some in-between I haven't found yet.

[texasmama]

Normally I think I'd say, let's try the meds, see if we can find something that works and where it gets us, and if the side effects are awful or it doesn't help her enough, we'll just stop. But there's another side of this too...I don't know much about her birth-family's medical history, especially her birth father. I know her birth mom has an uncle who's bipolar, and that she's suffered major depression. Both of these are risks for juvenile bipolar. It's been said in many places that meds can trigger bipolar, and then make it much harder to treat. After watching the video in the OP, I spent two nights researching, watching how severe JPD can be, and getting heart palpitations thinking What If??? What if I traded this moderately debilitating condition for something that could destroy her life? The chances probably aren't huge, but they're there.

I had an uncle who was bipolar (he is deceased - suicide), and I have suffered from major depression.  These are NOT strong risk factors for bipoloar.  Even having an uncle who is bipolar is not a strong risk factor for me, much less my children.  Since I have a dog in that hunt, I have asked those questions.

 

I do not have a child with ADHD so I do not have a dog in the ADHD meds hunt, but I remain pro-meds for many kids/adults.  All choices are a risk/benefit ratios.  As others upthread have pointed out, there are risks to NOT taking ADHD meds, short- and long-term.  

 

The facts are that the risk of having bipolar triggered (not caused - because ADHD meds cannot cause a disorder, only potentially trigger an underlying one) are very small.  That is not, IMO, a reason to avoid ADHD meds.  There are much more compelling side effects or risks if you want to think of justifying avoiding trying ADHD meds.  

 

I do understand the conundrum about not having a complete family history, but I want to offer that even those of us with biological children often have incomplete family histories, either due to lack of relationships with extended family, lack of information, lack of knowledge, lack of diagnoses "back in the day", etc.  I have two kids with two different genetically-caused issues, and until my son was diagnosed with ASD, I was completely unaware of anyone in the family with ASD.  No one has ever been identified with clubfoot.  Some things, like clubfoot, are rare enough that you need a really large sample size to see a familial pattern.

 

I would never tell you to put your child on ADHD meds, but I will tell you that the reasons listed above are not compelling enough to avoid ADHD meds if they are otherwise indicated, IMO.

 

That is the tiny sliver of what I have to offer to this conversation and will likely not even have time to get to the end of this thread.

[Mom28GreatKids]

It's interesting, I have this challenge with Anna as well. It's such an ADHD thing, not being able to clean up because it's BORING, and so I'll direct her to pick up Legos, she'll pick up ONE and then be distracted and go off doing something else. Whatever she's finished playing with gets dropped right there, and clothes get left all over her bedroom floor. She loves art, so there are always scraps of cut paper on the floor. Add to that the elaborate structures she creates with Magformers or K'Nex that she doesn't want to put away because they become part of pretend play...

 

I used to demand she clean with me, and the whole thing would get extremely upsetting, both of us frustrated. Until...I finally gave up. I hated the struggle and the arguments, and it just didn't feel worth it. So now I clean myself every 2-3 days, occasionally I'll ask her to help but her help is minimal. And I have this ongoing argument in my head. Am I doing her a disservice by not enforcing cleaning rules? Will she grow up to live in a perpetual rat's nest because she doesn't have the habit of picking up after herself and is used to playing in this kind of chaos? (And really, if that's her personality--and I DO think it's part of ADHD--is there anything I can do to change that anyway?) I keep thinking it'll get better as she gets older and more self-directed, and I can enforce then, but really, how hard is it going to be to enforce compliance from a teenager for tasks she hates? Sigh...I just don't know, I feel like I'm choosing between two evils, and don't know if I've made the best choice or if there's some in-between I haven't found yet.

Yes, I was avoiding the whole thing and doing it myself when he went to bed, or had older kids do it while I took him to Therapy because if we did it in his presence he would flip out. And this wasn't elaborate creations he had made. I tend to be sensitive to stuff like that. But it was like the duplos dumped out of the bin, playmobil all over, and games left and not cleaned up, as he literally could not handle the transition of being done with that activity.

 

Well, that translates to the OT with her visual schedule saying it is time to be done with this fine motor cutting activity. Next we are going to ride the scooter down the ramp (trying to provide him with adequate warning to move on). He would be off and running, and she would be like, no, we have to clean this up first and he would flip out and cry. So now I see the need to why he needs to be required to do it here so that behavior translates to Therapy.

 

I think in my trying to avoid meltdowns and keep him regulated, I stopped requiring normal things of him that I would not even think twice of requiring my nt kids. So now I am trying to figure out what battles I need to fight to help support the therapists to make their jobs easier. Kwim?

 

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[Azalea]

I know many of the posters haven't had time to watch the video. I encourage watching it. The speaker simply states the findings of research done on the outcomes of using ADHD medications, without a lot of opinion. There have been no long term studies that point to positive outcomes. There are negative consequences. He does address the two studies that state some positive outcomes and explains the failings of those studies. It is worth the time to watch, thanks OP for posting.

[PeterPan]

Yes, I was avoiding the whole thing and doing it myself when he went to bed, or had older kids do it while I took him to Therapy because if we did it in his presence he would flip out. And this wasn't elaborate creations he had made. I tend to be sensitive to stuff like that. But it was like the duplos dumped out of the bin, playmobil all over, and games left and not cleaned up, as he literally could not handle the transition of being done with that activity.

 

Well, that translates to the OT with her visual schedule saying it is time to be done with this fine motor cutting activity. Next we are going to ride the scooter down the ramp (trying to provide him with adequate warning to move on). He would be off and running, and she would be like, no, we have to clean this up first and he would flip out and cry. So now I see the need to why he needs to be required to do it here so that behavior translates to Therapy.

 

I think in my trying to avoid meltdowns and keep him regulated, I stopped requiring normal things of him that I would not even think twice of requiring my nt kids. So now I am trying to figure out what battles I need to fight to help support the therapists to make their jobs easier. Kwim?

 

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I think that can be connected to anxiety.  So like anxiety their toys won't be there or that they won't be able to find them.  Or cognitive rigidity, but again due to anxiety.  

 

And the only reason I say that, because it's like if we have the right words then we can think clearly about how we want to tackle it, kwim?  Because then it's not like "if I just did this more, then it would go away" kwim?  It's more like how could I reduce anxiety and get into this through the back door, kind of quietly...  That's why I was realizing wow, a visual schedule and a reward for completion could be good for my ds.  Then he's thinking about the steps, the visuals, the reward.  For him visual schedules are SHOCKINGLY effective.  Like even just something as simple as use your cell phone and take a picture of each bin then use those pics to create a page with the steps in order.  Visual.  So then he completes a step, gets an m&m, completes another step, gets an m&m.  Just thinking out loud here.

 

Some things we do more of, yes, will make more pathways.  Flexibility is like that.  Practicing it breeds more.  But, unfortunately, rubbing against anxiety just fluffs up the anxiety.  So it's really tricky to get in there and get what we're trying to get without doing that.

 

Totally different way.  Invite someone over for a regular event every Sunday.  That way it's like oh we're all doing this, it's just how it is.  Might not be perfect, but it does seem to get us over some of that hump, sort of bending the laws of (mental) physics.  And yes, I do think it's an issue of making them able to live with others.  It really makes people a pain in the butt to live with.  

[sbgrace]

I know many of the posters haven't had time to watch the video. I encourage watching it. The speaker simply states the findings of research done on the outcomes of using ADHD medications, without a lot of opinion. There have been no long term studies that point to positive outcomes. There are negative consequences. He does address the two studies that state some positive outcomes and explains the failings of those studies. It is worth the time to watch, thanks OP for posting.

 

The isssue is if he is truly considering all studies or using his research to bolster a certain point of view.

Example:

http://sharpbrains.com/blog/2015/03/03/adhd-the-brain-does-adhd-treatment-improve-long-term-academic-social-and-behavioral-outcomes/

 

Example on the follow up of the multi-modal study:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063150/

Type or intensity of 14 months of treatment for ADHD in childhood (at age 7.0–9.9 years old) does not predict functioning six-to-eight years later. Rather, early ADHD symptom trajectory regardless of treatment type is prognostic. This finding implies that children with behavioral and sociodemographic advantage, with the best response to any treatment, will have the best longterm prognosis. As a group, however, despite initial symptom improvement during treatment that is largely maintained post-treatment, children with Combined-Type ADHD exhibit significant impairment in adolescence. Innovative treatment approaches targeting specific areas of adolescent impairment are needed.

 

 

You can emphasize the depressing truth that children with combined type ADHD continue to perform poorly compared to peers without ADHD regardless of treatment. You can highlight that the type of treatment selected didn't predict functioning.

 

You can ignore the clearly stated conclusion that those who respond best to their treatment have the best long term prognosis.

 

I'm going to link this fleshed out NIMH discussion of the study as well. http://www.nimh.nih.gov/news/science-news/2009/short-term-intensive-treatment-not-likely-to-improve-long-term-outcomes-for-children-with-adhd.shtml

 

Again, this is depressing in that ADHD kids, treated or not, significantly lagged behind peers without ADHD. However, as quoted in the NIMH brief,

"Some differences emerged among the youths with ADHD.  For example, youths who had responded well to treatment and maintained their gains for two more years after the end of the trial tended to be functioning the best at eight years."

 

This, to me, says find the most effective treatment you can find for your child. Positive treatment response will likely improve that child's outcomes. That child is, statistically, still likely to have outcomes well below those they would have had without ADHD. 

 

I am a bit confused because the original study did show greater improvement in medicated individuals, but the follow up said over-all outcomes didn't change based on treatment received (note: apparently medication didn't worsen outcomes).  Another sticky point is that a lot of the community treatment group in the original studies, I think 2/3, were actually medicated by their pediatricians or other doctors during the study. So that group was generally getting medication even though they weren't in the medicated arm of the study. A large portion of those in the behavioral treatment groups reported they were unable to continually carry out the behavioral plans too if I recall. In fact, I think they had trouble carrying them out even while the study was going on. All that makes interpretation difficult I'd think. And the implications could go either direction, depending on the eyes interpreting. A large portion of those medicated, over half, stopped taking medication sometime in the following 8 years. They were functioning as well as those who were still medicated at the 8 year point. One take away, again, is that the medication apparently didn't make them unable to function without it. You could of course argue that those still medicated would do equally well without medication--that it wasn't effective. It would be hard to say without further investigation into the details of each medicated and (truly) non-medicated participant. Further, they hint in their summary that outside influences, including symptom severity initially, may predict outcomes better than treatment choice.

 

I'm medicating my son because, like the OP's daughter, he wasn't able to function in any outside the home environment. He was older, and so the peer implications were even worse. I was concerned he was developing habitual behavior patterns just through repeated practice of certain ADHD influenced behaviors as others have described on this thread.

 

OP, I have one thing to put in the back of your mind for possible future examination based on a follow up you posted but I missed. One option is to try short acting stimulants only when she's going to be doing things outside the home. For my son, this takes a pretty high dose. But, like you, I can manage things inside the house. He just couldn't function in anything outside.  I wasn't ready to take the medication step until my son was quite a bit older and even then it took us quite a while to actually try a stimulant. But you could file that away as a possibility someday.

Edited January 23, 2016 by sbgrace

[kbutton]

Yes, I was avoiding the whole thing and doing it myself when he went to bed, or had older kids do it while I took him to Therapy because if we did it in his presence he would flip out. And this wasn't elaborate creations he had made. I tend to be sensitive to stuff like that. But it was like the duplos dumped out of the bin, playmobil all over, and games left and not cleaned up, as he literally could not handle the transition of being done with that activity.

 

Well, that translates to the OT with her visual schedule saying it is time to be done with this fine motor cutting activity. Next we are going to ride the scooter down the ramp (trying to provide him with adequate warning to move on). He would be off and running, and she would be like, no, we have to clean this up first and he would flip out and cry. So now I see the need to why he needs to be required to do it here so that behavior translates to Therapy.

 

I think in my trying to avoid meltdowns and keep him regulated, I stopped requiring normal things of him that I would not even think twice of requiring my nt kids. So now I am trying to figure out what battles I need to fight to help support the therapists to make their jobs easier. Kwim?

 

Sent from my XT1049 using Tapatalk

 

I don't think that our kids categorize or take cues from the same things other kids do. I think that is why we often need to do things like this at home if we want to see it happen in therapy. If I let my son do certain things at home, he WILL DO THEM in other contexts. Can he learn that different contexts require different behaviors? Yes, but it's difficult, and when he was younger and less self-aware, this was totally impossible without adding extra scripts. If it worked at all, it was because he internalized that he did or did not do certain things for certain people, not so much that he did or did not do certain things in a specific context--he generalized the relationship more than he did the context. For instance, he internalized that it was not okay to climb all over and beat on my mother because she told him no and would not allow that. However, he internalized that it's okay to climb all over my MIL and beat on her because she would stand there, do nothing, and not at all back me up when I told him to stop and pulled him off of her. He also internalized a dozen other rude, annoying, bad habits that were specific to her because she undermined my parenting at every turn. For him, the behavior is stronger than the cognitive part. I think that is strongly an ASD trait. This is why medicating my son in order to gain compliance in some things is not a preference. If he can't inhibit behavior to learn a new response, then we are toast across the board, not just at home. I don't medicate my son for convenience, but it is convenient because it works.

 

I get that anxiety can get in the way, OhElizabeth, but with my son, I found that the responses to the requirements had an ebb and flow to them...there is always a peak day where I say, "Why did I even try this" followed (sometimes the next day) by my son responding as if the new requirement is no big deal and is something that he's been doing forever. And that is followed by a huge gain in confidence. I can't begin to tell you how important this has been at the doctor's office and other places where he knows things might not be preferred. And one bad experience can set the tone even when he's compliant if the person treats him disrespectfully. But, we've worked, worked, and worked on anxiety and new situations, and my son routinely shocks people with his compliance. He's had multiple surface cavities filled at one time without numbing meds at our dentist (he has malformed enamel). When the dentist found out he has an ASD diagnosis, he about fell over. That was hard won, and we didn't traumatize him getting there. I can't promise those results for everyone, but if we had avoided all anxiety, meltdowns, and bad reactions to things, my son would not be able to go anywhere. These things have been very, very confidence building for him. 

 

I will also point out that my son's anxiety is largely alleviated by stimulant meds--he is more competent with meds, and that leads to less anxiety. Not all kids will be this way, but I think that gets lost in the discussion sometimes. Many of the things we've worked on with our son were things we did before starting meds. It's WAY harder that way--the meds have accelerated his ability to learn new stuff tremendously.

[sbgrace]

I don't think that our kids categorize or take cues from the same things other kids do. I think that is why we often need to do things like this at home if we want to see it happen in therapy. If I let my son do certain things at home, he WILL DO THEM in other contexts. Can he learn that different contexts require different behaviors? Yes, but it's difficult, and when he was younger and less self-aware, this was totally impossible without adding extra scripts. If it worked at all, it was because he internalized that he did or did not do certain things for certain people, not so much that he did or did not do certain things in a specific context--he generalized the relationship more than he did the context.

 

I want to add my experience in that this is my son as well. I'm actually really glad you pointed this out, because I needed to see someone say it in those words I think. But my son (ADHD and ASD) doesn't easily differentiate contexts either.

 

 

I will also point out that my son's anxiety is largely alleviated by stimulant meds--he is more competent with meds, and that leads to less anxiety. Not all kids will be this way, but I think that gets lost in the discussion sometimes. Many of the things we've worked on with our son were things we did before starting meds. It's WAY harder that way--the meds have accelerated his ability to learn new stuff tremendously.

Also, my son is less anxious on stimulants. We actually avoided stimulants because of warnings about anxiety and he has an actual anxiety disorder. The opposite has occurred. I actually recently saw a study/news article on a study/something I can't place right now suggesting that stimulants were more likely to decrease rather than increase anxiety. It caught my attention because this was our experience.

 

Meds have helped my son learn new things too.

Edited January 24, 2016 by sbgrace

[PeterPan]

Kbutton, that's a really interesting point that on the meds your ds is more *teachable*.  That as incredibly interesting.  Since you started them later (yes?), I don't know how far that retroacts.  Like if you give the meds to a 7 yo, does that bring into reach things that weren't in reach before that maybe non-ASD, non-ADHD kids could get?  Or it just slows them down to be able to process a bit?  I don't know.  It's just quite obvious that the major breakthroughs and push in social for these kids isn't really in earnest until 4th grade, age 10-ish.  Until then, the discussion seems more behavioral.

 

I don't know, just thinking out loud.  Anyways, THAT is interesting, especially with our bright kids.  Any time there is this gap between NT and ASD/ADHD that we can bridge with therapy, then the question is how can we get in there and bridge that.  But you can't get in there and do what even NT kids are not doing at that age.  If it's not age-appropriate, it's not age-appropriate.  But if it's within reach with therapy with the meds, that's fascinating.  The only thing I've seen is people who give the meds and don't bother with serious cognitive and behavioral therapies on top of it.  I'm sorry, but I haven't met anyone doing that with their 7 yos.  I'd like to meet them.  If that's what someone is doing, I'd actually like to hear about it.  I'd like to hear how meds affect the trajectory of that in a 7 yo.  

[PeterPan]

My son is less anxious on stimulants. We actually avoided stimulants because of warnings about anxiety and he has an actual anxiety disorder. The opposite has occurred. I actually recently saw a study/news article on a study/something I can't place right now suggesting that stimulants were more likely to decrease rather than increase anxiety. It caught my attention because this was our experience.

 

Meds have helped my son learn new things too.

I can't remember if I asked this yet, but when did your ds begin meds?  And you said it was his outside things that prompted you?  Why would the meds improve anxiety?  I'm not doubting, just trying to understand that pathway.

[Guest]

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Edited February 10, 2016 by Guest

[kbutton]

The issue when you are dealing with kids with a higher level of intelligence is, the expect you to explain everything. Problem with ASD is, you have to find the way to get through to that specific child. Here's an example. My oldest was getting his clothes to change for us to go to the doctor yesterday. His little brother is sitting on the bottom bunk while I am in the room getting my youngest to put his socks on. My oldest tosses his clothes on his little brother's bed getting him partly in the face. I have already told him that putting his clothes on his brother's bed while changing is not allowed. It is not his space! Touching him while doing it was even worse. I told him he is invading his brother's space. Answer, "But I am standing right here! I am nowhere near him!". Yup, I get those type of answers often. My reply to him to get it through his head? I said, "OK, let's say a country is shooting missiles from their country over to a neighboring country. What would that be called?". He replies, "An invasion attempt". I said, "But they didn't cross the boarder into the other country! They are just shooting missiles from their own! Can you get how this applies here?". Reply, "OK, I get it :)". 

 

LOL!!! So true!

[kbutton]

Kbutton, that's a really interesting point that on the meds your ds is more *teachable*.  That as incredibly interesting.  Since you started them later (yes?), I don't know how far that retroacts.  Like if you give the meds to a 7 yo, does that bring into reach things that weren't in reach before that maybe non-ASD, non-ADHD kids could get?  Or it just slows them down to be able to process a bit?  I don't know.  It's just quite obvious that the major breakthroughs and push in social for these kids isn't really in earnest until 4th grade, age 10-ish.  Until then, the discussion seems more behavioral.

 

I don't know, just thinking out loud.  Anyways, THAT is interesting, especially with our bright kids.  Any time there is this gap between NT and ASD/ADHD that we can bridge with therapy, then the question is how can we get in there and bridge that.  But you can't get in there and do what even NT kids are not doing at that age.  If it's not age-appropriate, it's not age-appropriate.  But if it's within reach with therapy with the meds, that's fascinating.  The only thing I've seen is people who give the meds and don't bother with serious cognitive and behavioral therapies on top of it.  I'm sorry, but I haven't met anyone doing that with their 7 yos.  I'd like to meet them.  If that's what someone is doing, I'd actually like to hear about it.  I'd like to hear how meds affect the trajectory of that in a 7 yo.  

 

The meds move my son's ups and downs from a range as wide as Himalayas to the Marianas (sp?) Trench to the rolling hills of Kentucky horse country. That is not an exaggeration. Ask my mom.

 

I hate to burst your bubble on social: 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2572031/ 

"As a result, social difficulties are extremely common in children with ADHD. A recent study8 examining peer status in clinically-diagnosed 7–9 year old children with ADHD from the Multimodal Treatment Study of Children with ADHD (MTA)9,10 found that 52% fell in the rejected category (using Coie et al.’s11classification system) and less than 1% were of popular status.8 When children who did not fit into any category were excluded in calculating these percentages, the situation was even more bleak with 80% of children with ADHD falling in the rejected group.8 These figures are consistent with prior work indicating that 82% of children with ADHD have peer rejection scores one standard deviation or more above the mean and 60% are two standard deviations or more above the mean.12

The peer problems of children with ADHD, however, are not limited to rejection. For example, compared to their classmates, MTA children were lower on social preference, higher on social impact, less well-liked, and had fewer dyadic friendships; they also were disliked by children of higher status within the peer group, suggesting a process of exclusion by more popular peers.8 These results held regardless of grade or gender, indicating that impaired peer relationships are well established by age 7 (the age of the youngest children in the sample). Importantly, post hoc analyses indicated that these peer deficits were in fact due to ADHD and not attributable to comorbid oppositional defiant disorder/conduct disorder or anxiety.8

Additionally, the peer difficulties of children with ADHD are almost immediately apparent in new social groups, as demonstrated by studies that place children with ADHD in laboratory or naturalistic settings with unfamiliar peers. For example, by the end of the first day of a summer program, children with ADHD were more rejected by peers than non-ADHD participants.13 Similarly, in a play group study that involved placing children with ADHD in groups with unfamiliar non-ADHD peers, the non-ADHD participants began complaining about the behavior of their ADHD peers within minutes.12 These studies provide compelling evidence that the peer problems of children with ADHD follow them wherever they go."

This quote jives with my experience in watching and working with kids and all my childhood memories of kids who likely should have had an ADHD diagnosis. I haven't read the whole article--I've read this stat before and was looking for that. Will try to read the article later.

[kbutton]

Any time there is this gap between NT and ASD/ADHD that we can bridge with therapy, then the question is how can we get in there and bridge that.  But you can't get in there and do what even NT kids are not doing at that age.  If it's not age-appropriate, it's not age-appropriate.  

 

Age-appropriate will vary a lot, unfortunately, and then with ASD, there is support level and self-awareness level to factor in.

[Guest]

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Edited February 10, 2016 by Guest

[Guest]

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Edited February 10, 2016 by Guest

[sbgrace]

I can't remember if I asked this yet, but when did your ds begin meds?  And you said it was his outside things that prompted you?  Why would the meds improve anxiety?  I'm not doubting, just trying to understand that pathway.

 

Well, we tried a non-stimulant first in the fall of 2013 (9, approaching 10 years old). It did help behavior (hyperactivity, impulsivity) but it made him slow, almost sedated. At the time, I felt it sucked the life out of him.

 

We tried another non-stimulant in the later summer of 2014-10 years old. This one (Intuniv, fwiw) did improve hyperactivity and impulsivity--making him more functional in outside settings. It also sort of helped attention in that he could focus to read books, write stories, and similar. It actually helped him in the ADHD areas. However, within 3 months it had increased OCD to the point where he was no longer functioning in any setting, home included. I should have stopped it at the first sign of anxiety, but for a while it seemed a little OCD would be a small price to pay for being able to be a part of more things. I have never read about our heard of anyone else with OCD worsening with Intuniv. I have some theories as to why it did that in my son. The take away is that we had to stop the med due to anxiety. However, I don't want to discourage anyone else from trying that med due to anxiety as I suspect my son is an anomaly. I'm just outlining our particular journey.

 

We began short acting Ritalin, his first stimulant trial, in September of 2015. He was (is) 11. It took all of Sept to get him up to the right dose.

 

I am not mentioning non pharmaceutical drugs and techniques we've tried--l-theanine, magnesium, fish oil, probiotics, pine bark, feingold, etc. He still takes all those supplements, which is why I can remember those to list but not others. Oh, we did phosphatidylserine as well, though he doesn't take that any more.  Most of his supplements help certain areas at least a little. However, none help even close to the extent that any the meds have helped him.

 

Yes, outside things prompted us. I have had to pull him out of every outside activity we had ever tried due to impulsive and hyperactive behavior. I don't want to go into detail on a public forum, but it was severe. I'll give you a non behavior specific example from just prior to the stimulant trial. We were trying another activity, one where the adults particularly were trying hard to accommodate his  issues so he could participate and where the other kids involved are especially tolerant. He had begun at the very tail end of the previous year, and they knew his issues. We were all hoping he could be a part this year. I went just after the first or second meeting to talk to the director. All the adults involved were having an impromptu meeting...about him. These people cared. He was just that unmanageable, and this was with my husband attending with him and taking supplements that did help some, just not nearly enough for functional. 

 

I can't explain why my son is less anxious on Ritalin. He is. I didn't expect that. In fact, that was my main concern with stimulants in his case. I'll link an article about a study. I'm not sure if this is what I came across recently or not. Actually, I think I had found the actual study, but this is the first link that popped when I did a google search just now. 

http://www.psychiatryadvisor.com/child-adolescent-psychiatry/stimulant-attention-deficit-hyperactivity-disorder-children-adolescents/article/443526/

The risk of anxiety associated with stimulant treatment was significantly lower than that experienced with placebo, the researchers reported in the Journal of Child and Adolescent Psychopharmacology.

 

 

A new review of studies involving nearly 3,000 children with attention-deficit/hyperactivity disorder (ADHD) concludes that, although anxiety has been reported as a side-effect of stimulant medication, psychostimulant treatment for ADHD significantly reduces the risk of anxiety

 

 

It caught my eye only because my son's response in this area has surprised me. I felt we were extremely fortunate. Actually, I still feel extremely fortunate! But he's clearly not the only child to have this good response.

Edited January 24, 2016 by sbgrace

[Guest]

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Edited January 25, 2016 by Guest

[Targhee]

Or it has just become more ok to talk about bpd now that Glen Close's sister is out, etc. Diagnosis of EVERYTHING is up.

Don't know (or care) about celebrity stumping for causes, but I would venture a guess that those kids diagnosed with ADHD and followed by a provider for years have an increased likllelihood of just about any mental health co-morbidity NOT because there is an increased instance of co-morbidity but simply because they and their provider are paying closer attention to mental health.

[PeterPan]

Kbutton, that's a very interesting study.  My point was I'm not seeing a lot of materials actually targeted at it.  Our ps didn't bother to make him any goals, despite EVERY SINGLE PSYCH who has seen him saying social is an issue.  It's just the screwiest thing I've ever seen.  And ever single program I pick up is always like oh but that's better when they're 10, oh that's better when they're...  There are a few stories, but I would have to read those books till I'm blue in the face.  He doesn't even understand them.  The concepts seem not to register with him.  So I look at someone who starts meds when the kid is 10 saying wow, got these amazing breakthroughs, and I'm thinking it was a *convergence* of things.  The meds helped, but they were also developmentally *ready* to have those conversations.  Like I'm not sure starting meds earlier makes that happen earlier.  

[Targhee]

The meds move my son's ups and downs from a range as wide as Himalayas to the Marianas (sp?) Trench to the rolling hills of Kentucky horse country. That is not an exaggeration. Ask my mom.

 

I hate to burst your bubble on social:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2572031/

"As a result, social difficulties are extremely common in children with ADHD. A recent study8 examining peer status in clinically-diagnosed 7–9 year old children with ADHD from the Multimodal Treatment Study of Children with ADHD (MTA)9,10 found that 52% fell in the rejected category (using Coie et al.’s11classification system) and less than 1% were of popular status.8 When children who did not fit into any category were excluded in calculating these percentages, the situation was even more bleak with 80% of children with ADHD falling in the rejected group.8 These figures are consistent with prior work indicating that 82% of children with ADHD have peer rejection scores one standard deviation or more above the mean and 60% are two standard deviations or more above the mean.12

The peer problems of children with ADHD, however, are not limited to rejection. For example, compared to their classmates, MTA children were lower on social preference, higher on social impact, less well-liked, and had fewer dyadic friendships; they also were disliked by children of higher status within the peer group, suggesting a process of exclusion by more popular peers.8 These results held regardless of grade or gender, indicating that impaired peer relationships are well established by age 7 (the age of the youngest children in the sample). Importantly, post hoc analyses indicated that these peer deficits were in fact due to ADHD and not attributable to comorbid oppositional defiant disorder/conduct disorder or anxiety.8

Additionally, the peer difficulties of children with ADHD are almost immediately apparent in new social groups, as demonstrated by studies that place children with ADHD in laboratory or naturalistic settings with unfamiliar peers. For example, by the end of the first day of a summer program, children with ADHD were more rejected by peers than non-ADHD participants.13 Similarly, in a play group study that involved placing children with ADHD in groups with unfamiliar non-ADHD peers, the non-ADHD participants began complaining about the behavior of their ADHD peers within minutes.12 These studies provide compelling evidence that the peer problems of children with ADHD follow them wherever they go."

This quote jives with my experience in watching and working with kids and all my childhood memories of kids who likely should have had an ADHD diagnosis. I haven't read the whole article--I've read this stat before and was looking for that. Will try to read the article later.

This also jives with my (my kids') experiences. And DH's. And my brother's. I will say though that with meds the rejections are probably statistically significantly less than without.

[PeterPan]

Sbgrace, thank you for explaining that.  And yes, it's something I think about a lot, whether my ds could participate in a summer program, for instance, with his intellectual peers.  And yes, that's very interesting that studies are showing that the stimulant meds are actually, for some kids, decreasing anxiety.  We know anxiety is behind a LOT of these behaviors, and improving that would be astonishing.  

 

And fwiw, I continue to utterly reject the idea that data for a population has to drive us away from something that might be better for our kids in a specific situation.  Even if there are, say, no academic gains with meds *over a population* that DOES NOT MEAN there were no gains in specific instances.  It just means it averaged out with some more, some less, making it a wash.  That would be like saying just because a percentage of late talkers improve without therapy that none of them need therapy.  Those averages work by having a variety of different responses and issues.  And we only have to decide for our ONE SITUATION, not the whole world.

 

So, sbgrace, can I ask another question?  Was eating on your mind?  Growth?  Is it common that the kids eat less or lose weight?  I mean, dude, I would think my ds would eat MORE if he weren't so busy, mercy.  But that to me is a serious question, kwim?  

[sbgrace]

 

So, sbgrace, can I ask another question?  Was eating on your mind?  Growth?  Is it common that the kids eat less or lose weight?  I mean, dude, I would think my ds would eat MORE if he weren't so busy, mercy.  But that to me is a serious question, kwim?  

 

Yes, especially when he was younger. His doctors initially said stimulants weren't an option because of these concerns--he's always been small with appetite issues.

 

But I don't care anymore. Functional matters a lot more than a few cm in height long term. He wasn't functional.

 

That said, we're using short acting partly because he can eat breakfast before the med kicks in and then it wears off again before he has lunch. He can then take a second dose just before or just after lunch and it's out before dinner. I am certain he has lower appetite when the Ritalin is in his system. But it's either not in full effect or completely out before meals so he's definitely not eating appreciably less.

 

Whether it will affect growth anyway I don't know. It appears sleep apnea affected growth more for him fwiw. He jumped up in the growth scales after surgery. Then he hit puberty around that time too, so who knows how it shakes out long term. It's a non-issue for me now though.

Edited January 24, 2016 by sbgrace

[kbutton]

Kbutton, that's a very interesting study.  My point was I'm not seeing a lot of materials actually targeted at it.  Our ps didn't bother to make him any goals, despite EVERY SINGLE PSYCH who has seen him saying social is an issue.  It's just the screwiest thing I've ever seen.  And ever single program I pick up is always like oh but that's better when they're 10, oh that's better when they're...  There are a few stories, but I would have to read those books till I'm blue in the face.  He doesn't even understand them.  The concepts seem not to register with him.  So I look at someone who starts meds when the kid is 10 saying wow, got these amazing breakthroughs, and I'm thinking it was a *convergence* of things.  The meds helped, but they were also developmentally *ready* to have those conversations.  Like I'm not sure starting meds earlier makes that happen earlier.  

 

I think that is the ASD. Not saying that other kids the same age might not get it either, but a lot of it is the ASD. 

 

I think a lot of the social skills stuff is remedial, so it's not like it would ALL be inappropriate for younger, NT kids. I think a lot of general behavior in that 7-9 range is what contributes to social. It forms the basis for whether a child is liked or not--kids want to be able to play and have their space respected; they want to be able to have the whole group (from 2-20, not just classrooms) be able to do the activity well enough that there isn't a lot of friction. And they realize (even when they start acting out because things are chaotic) that things go better and smoother when people go with the flow and respect rules. For example, if you actually like a regular game of ping pong, are you going to enjoy playing with the person who hits the ball back, or the person who turns it into a game of racquetball and thinks it's hysterically funny to do so over and over even after you make it clear that you'd really like to play by the rules? 

[kbutton]

That said, we're using short acting partly because he can eat breakfast before the med kicks in and then it wears off again before he has lunch. He can then take a second dose after lunch and it's out before dinner. I am certain he has lower appetite when the Ritalin is in his system. But it's out for meals so he's definitely not eating appreciably less.

 

We have similar results. He's really hungry in the evenings, but he's not exactly anorexic during the day. Short-acting stuff here too.

[Lecka]

I see a lot for pre-school social skills that I do not think is particularly behavioral.

 

Sharing, following directions as part of a group, joining in cooperative play, shared pretend play, etc.

 

This is all pre-school/K/1st grade stuff. We are still focusing on it. It is very important.

 

I see it is materials for little kids. I am still liking stuff from books aimed at little kids, that I read aimed at toddler/pre-school, when my son was 4. He is still working through that stuff, or, it is still an appropriate level for him. I think that kind of 3 or 4 through 7 age range is one that has stuff. It is more play-type skills if anything, or being part of a group, for social skills, overall, I guess.

 

I don't have to look far to see social skills for my son to work on that are still very appropriate to his age. The same things as other kids in the pre-school/K/1st age group!!!!!!

 

Since meds are not recommended for my kids, I am not so in the loop on it. My strong impression is I know some kids in this age range who have started meds. It is one of those things where somebody wonders if my kids are, but my kids aren't, and then maybe the conversation stalls out. I have known 3 kids where I know about it, who have been friends with my older son. But they do not have ASD.

 

In my area some things can have a stigma so people do not announce it to everybody.

 

OhE, if you come across like you do vitamins and stuff, a lot of people won't tell you. You may not know anyone anyway, but if you seem like you might be judgmental, you will be out of the loop.

 

I am in the loop for behavior issues that a lot of people do not broadcast in general and do not want other people to know about, who might be judgmental or not understand.

 

It is something to keep in mind. Nobody has a sign on saying they do it.

 

My feeling is that I am surprised you don't know anyone in this age group pursuing all possible options, bc I am confident or have an impression that I do. But it is private information, and I do not have a personal reason to ask, so I would just be idly curious.

 

I never shared with any local parent my son's reading problems, out of a fear of judgment. Really -- I hear people make comments that are like "what kid could have trouble blah blah" and I do not share. I just nod my head.

 

So I do wonder if you are around people choosing a sub-culture that is anti-meds overall, or if people keep it quiet, or if it hasn't come up but if you mentioned it a few times some people might talk about it.

 

I know that seems obvious, but it is amazing how we can have little groups and not tell others about some kid things that we don't want to be gossiped about.

Edited January 24, 2016 by Lecka

[PeterPan]

Ok, I'm finally sitting down to finish the video, because what else is there thrilling to do on a Saturday night besides clean, do laundry, cook for tomorrow, read books on autism, prep for next week, hang a heavy bag, buy dog food...  Oh no, wouldn't want to do any of that, so here goes.  Just some rolling feedback/conversation as I watch.

 

-He comments that the diagnoses are driven by class situations, that the symptoms aren't obvious in the psych's office or at home or seemingly affecting them anywhere else.  I hope we homeschoolers are taking note of this, that this is a school construct.  You're totally wet saying ADHD is affecting your kid anywhere else, and if you'd stop recreating school you wouldn't have the problems of school.  Snort.

-He cites data saying it's more common for kids who are young for grade.  My ds who is on the old end of his grade and then being basically retained a grade beyond that will be SO HAPPY to know it's merely because he's young for his grade, that my expectations are just totally inappropriate.

-It's due to immaturity, so if our kids weren't so immature they wouldn't have these delays.

-Now THIS is where it gets interesting, because he's going into the "does it exist" thing, looking for chemical and structural markers.  I've read books on this argument, and it's actually really interesting to me.  Then I flip and go OK, but we still have this slight problem that I have to deal with what's in front of me.  It's a really stupid argument to say that because they don't understand it it doesn't exist.  

-His info must be old on the structural argument, because we've been discussing plenty of studies in this thread, easily, easily found studies, looking at structural MRIs of ADHD populations who were either on meds or med naive (never treated) and comparing their structures as adults.  So we now HAVE that info and we have the info comparing NT and ADHD with structural MRIs.  So he's outdated there.

-Happily admits that the whole field is not completely researched yet for ANY of the labels, that it's ALL a work in progress.  So if you happen to have a bipolar family member and are cool with them being on their meds, it's just as controversial as the step you're taking here with ADHD meds.  And you're RIGHT IN THE CAMP of people who say it's all in their heads and that if they WANTED to be better they would be better and that if they RECITED ENOUGH BIBLE VERSES THEY WOULDN'T HAVE THIS PROBLEM when you buy into this thought process.  Because, frankly, that's where I hear it.  And that gives my brain so many swirlies to think about, I just don't want to go there.  Because I've talked with them, and that's EXACTLY where they get their argument.  And I reject it with BOTH applications, because it just doesn't make sense to me.  It makes a religion of science, saying science and doctors know EVERYTHING rather than saying they're fallible people trying to understand incredibly complex things.  The leap of confidence in doctors and science just isn't there for me.  I find it easier to trust my gut and what I see in front of me.

-Ok, I'm getting really bored with the persuasive spin on the outdated research.  Too much spin, no attempt to be balanced.  This could be on PBS selling something or trying to con you out of money.  This is totally aimed to persuade and build a case, not to inform and be balanced.

-Yes, I agree that I'm not cool with calling ADHD a "disease".  I had a practitioner tell me that not giving meds, to her, was akin to child abuse.  He's correct that this a serious issue to consider.  Because if you view these kids as broken, defective, and deficient, then it WOULD be immoral not to give them the meds.  And child services could require it.  And the schools could compel it.  But right now they can't.  They can't even drop a hint or ask you.  Because it's not.  But there ARE practitioners saying this.

-You do see the Ritalin=cocaine thing on the slide, right?  I thought we were beyond this as a culture??  Like REALLY?  Dude, I hope this guy doesn't drink coffee.  Cuz I really don't want to have to go into my coffee is addictive, christians who drink coffee are abusing their body and sinning line...  Cuz remember, I'm pretty rigid, and for me, to have an ADDICTION to something and say well MY addiction is ok and YOUR addiction is not is really stinkin' hypocritical.  So I SURE HOPE this guy is not drinking coffee.  Ever.  Because it's that addictive.  There's definitely no way to drink coffee in moderation and like go on with a cup for an hour and then go off.  Nope, if you drink a cup of coffee, you're going to be hooked FOR EVER because that stuff was like, well like ADDICTIVE.  

-boring, boring, need a better slide.  I'm looking at the funky light display on the wall, the star, and wondering what it's for.  Wow this is boring.  Who cares.  So it's the same uptake inhibition like you get with prozac for serotonin.  Big whoop.  But I still say the guy is a hypocrite and drinks addictive drugs every day with impunity.  Because these things are DRUGS.  Because our culture picks what is bad and what isn't.  So today marijuana is bad and tobacco is fine, even though both are just green stuff that grows.  And using anything God put on the planet is bad.

-Oh dear, bad to Ritalin = cocaine.  I really thought we were beyond this.  It's no wonder we're all scared.  He sorta doesn't explore whether the EFFECT of ritalin is EXACTLY THE SAME in people who are NT and people who are ADHD.  That would be a good question.  I've heard split things there.  Like, on the one hand you have this thought process that stimulants are calming, therefore the action is reversed in ADHD people.  Then you have this oh well everyone feels better on speed, you're just a drug-gee using meds like that.  And there is that thought out there.  So fine, ask the question.  But this guy just blasts over it, like it doesn't MATTER that there COULD be a difference in effect.  Like really, I think people with ADHD kids are way more worried about their kids getting ZONKED on too much meds.  Or maybe that doesn't happen?  Kbutton said her ds was wired with too high a dose at first.  Or was it the length?  So would it have been the same effect on ANYONE in the population, or is there a difference in effect?  I think that's a really reasonable question.  Maybe he'll explore it. 

-Ahh, now the prozac.  You knew it was coming.  And me, I actually think it's a reasonable discussion to have.  But I think it's really disingenuine to say oh bad if it's ritalin, but fine if it's mom wanting prozac.

-Ok, he did just say we're making profound changes, disturbing their brains if we give them ritalin, yes?  That's sure what he walked into using this quote from a guy about prozac.  No talk about lifespan.  No studies to back that up.  Just this one incindiary quote and then extrapolations.  No discussion of like ok, the ritalin stays in your system x hours and requires z amount of time to wean off, but prozac stays in x long and requires z amount of time to wean off.  I think those could be different.  Nobody takes a 4 hour prozac, for pity's sake.

-For all you fools who think ritalin is normalizing chemicals or function in the brain, this guy would like you to know it's NOT.  Just flat not.  Now I'd sure like to see some studies on that.  I don't even think it's such a persuasive argument, because I don't consider a CAST for a broken leg normalizing either.  It's abnormal, funky, and not something you want to stay around.  But it helps you get where you're trying to go.  So he's working on the paradigm that the ONLY valid use of the meds is if there's this one scenario he has defined.  But I THINK parents who give the meds are pretty much at the I DON'T GIVE A FLIP WHY, I JUST NEED IT TO WORK point.  ;)

-Again says drastic and long-lasting alterations in function.  I'm really having a hard time matching that up with 4 hour ritalin.  Yes to prozac, no to ritalin.  Call me crazy.  Obviously this guy has some labs to substantiate this, right?

-So I'm 16 minutes into it, and he sets up his thesis: you only have the ethics and right to do this if there are LONG-TERM improvements, because this is a profound intervention, a dramatic (irreversible?) change that you're doing.  So you MUST accept his thesis that only long-term improvements would possibly make this worthwhile.  Not short-term things like social skills or ability to slow down and read, and certainly not safety of your child.  Nope, only if science can show up some kind of data showing long-term results that make for outcomes better than without meds would this POSSIBLY be worth such a risk.

 

I've chosen not to give meds, but none of these arguments hold water with me.  I'll keep going.

[PeterPan]

-Goal with meds, reduce fidgeting, talking in class, and improving focus on boring stuff.  Cites a 1995 study for this.  No mention of ANYTHING we are currently talking about.  I don't think ANY of us are freaking out over fidgeting.  We wouldn't care if it were just fidgeting.

-Ok, he lists a whole bunch of "meds make kids into zombies" quotes and asks if this is really good for the child.  I ask if that's even CURRENT since those quotes are from the *70s*.  Or, let's take that a step further.  We were discussing this tonight.  Is the child *capable* of self-advocating to say he feels like the meds are too much?  Is there an age where a child is MORE able to self-advocate for that in adjusting meds?  Does ASD complicate this?  Is it therefore more likely the young and vulnerable (those not able to self-monitor and self-advocate) are most likely to be zombied by meds or conveniently dosed on the higher end, where older patients might be able to self-advocate and collaborate in that process?  And even WORSE (and something I've wondered for some time now), what role does medical care access and economics play in outcomes?  Are children with state medicaid children's coverage less likely to have sufficient follow-up visits to tweak the meds and get the child feeling optimally?  Is there more likely to be a one and done, that's good enough, he's fine kind of approach when the parents can't AFFORD tons of follow-up visits to change meds and fine-tune?  I think that's a VERY good question.  My dd was just telling me about someone she knows (a teen) who spent *2 years* fine-tuning their meds to get a regimen that suited them and left them feeling optimally.  That's a long time!  That's a LOT of doctor visits!!  So that person's parents had money or insurance to fund that, but what about everyone else???

-Ok, let's back up and explore another thing.  He uses quotes from the 70s (mercy), without acknowledging that some of those kids who go flat had MORE going on.  Maybe they are kissing the spectrum and DO have a flat affect and DO go flat with meds because that's just their set-point.  To look at this and not differentiate that out is incomplete to me.

-Oh rats, ritalin won't make your kid smarter.  Wow, his video must be old because now we have the data and have CONFIRMED that ritalin won't make your kids smarter and doesn't affect long-term academic outcomes OVER A POPULATION.  Oh well.  And obviously that means that because it doesn't affect outcomes statistically over a population that NOBODY on this board who found improvements (like Ottakee, whose kids were then able to learn to read, etc.) could POSSIBLY have gotten those results.  Because 0 across a population OBVIOUSLY means zero for EVERYBODY.  (You know I'm snorting.)

-Just so you know, ritalin won't solve your marriage problems or keep your kid out of jail.  You might have to get some counseling on top of it.  But remember, the ritalin didn't help, no matter what you think.

-This guy's glasses are so far out, they're actually back in.  You can see similar ones on WarbyParker in case you're bored.

-We're back to long-term outcomes now.  Remember, you have to accept his thesis that only long-term results over a population matter.  Doesn't matter if it maybe kept your dc from impaling himself or helped him learned to read.  

-Ok, now this is actually interesting.  So he's got the growth problems in the MTA study.  There's probably much more current data on this, and it's actually something I'm concerned about.

-More MTA, now looking at 14 months (rah rah meds), 3 years (less symptoms if meds but MORE than in group that didn't take meds?),   So please say we're actually going to point out that people with less severe ADHD would be LESS likely to take the meds therefore, duh, would have LESS symptoms relative to the meds group.  I mean, we are doing some statistical study involving severity here, yes???  Like if the population that made the radical step to take this drug in the 70s that everyone was telling them was like cocaine and going to destroy their kids' brains, then PROBABLY those were the more severe cases.  So the more severe cases had reduced symptoms but, oh rats, still had more symptoms than the kids who had less symptoms to start with and never needed/took the meds.  Oh no, that couldn't POSSIBLY be an explanation for this.

-Do core symptoms get worse over time with meds?  That's a fair question.  I've talked with people who said that, that when their kids are off they're actually worse.  

-Ok, this guy REALLY DID SAY that the blessed kids whose parent's DIDN'T shove that accursed ritalin/cocaine stuff down their kid's throat were getting BETTER while the kids whose parents were so short-sighted as to give it to them only got minor progress.  So please, please don't allow our teens even to CONSIDER meds.  And adults, you are hereby put on alert.  You wouldn't need meds if you'd just WAIT.  Your improvement is coming, baby.

-Now we're to 6 years at the MTA.  That's loaded.  It's claiming behavior at 6 years of use is WORSE.  That's really important.  I really don't see any data there though.  I see one quote.  And it's old and kind of inflammatory.  I'd really like something concrete on that, because that's a pretty big claim.  And vague won't do there, because I keep going back to this point.  Worse relative to themselves or to the population that didn't elect to take the meds?  And we'd need really concrete ways of quantifying that.  That would be something to google for long-term studies on, because something that old and that vague won't do.

-That's weird.  First he says at 6 years, beware, the kids on meds were doing worse.  (worse than what, doesn't say, just WORSE, beware the WORSE)  But then he says at 8 years there was NO DIFFERENCE between kids on and off the meds!  So, me, I'm just really thankful to know that all we have to do is stick out those crunchy 2 years where our medicated kids get worse and then it will all pan out statistically and they'll be fine again.  Mercy.

-Does it bother anyone the assumption that everyone going for meds is planning on keeping them on for like 10 or 20 or 30 years? I mean, mercy, we wouldn't POSSIBLY consider breaks.  Nope.  And then back to their assumption that a statistical difference in a population over the long-haul is the ONLY thing that would make you decide.  Not, I looked at the child in front of me and his case was more severe, for him it really was life-altering.  

 

I don't know.  I don't even choose to use meds and these arguments are just so full of holes.  But maybe he has something more than quotes.  

 

-Ok, here I actually AGREE with him!  I think that's really helpful to say wow, we have data showing that 30 years from now, at least over a population, it doesn't matter which way you choose.  I think that's honest.  Because there ARE practitioners saying ritalin is like Vitamin C and that not to give it to your ADHD dc is akin to neurological starvation and child abuse.  I was LITERALLY TOLD by a practitioner that she considered it almost like abuse.  So he IS combatting a very real excess here.

-Ooo, like the cynicism of pharma and gov't hiding study results.  Always warranted.  

-BORING.  So boring.  So what.  Big flip if it doesn't change academic outcomes over a population.  

-Ok, I wanna understand this sentence (and pardon my deleting to show my confusion).  "no evidence on the use of drugs to affect outcomes relating to... consequences of risky behaviors..."  WHAT does that mean?  Like, well not so much would ritalin reduce your risky behaviors, but does ritalin reduce the CONSEQUENCES of your risky behaviors?  I think I know what they meant, but their parallel constructions are terrible.  Or I'm annoyed with the poor video quality.  I hate gobbley gook.  But seriously, now you know.  This guy is telling you, parents of the board you are WRONG, ritalin will do NOTHING statistically to alter your dc's dangerously impulsive behavior.  And all the psychs who are telling you your dc's social issues were due to ADHD and that social improving with the meds, well that was all placebo folks.  Because, there you have it, the guy who can't write a clear sentence KNOWS that ritalin won't affect outcomes with risky behavior or social issues.  Nope, no sirree.  And don't question this guy, cuz his middle name is Jeb and he's gonna sick his MAMA on you with a video.

 

Wow, 27:31 in.  It will never end.  If only he would be COMPLETE.  I'm SO willing to be convinced these meds are dooming my kid!  The only thing that has even been REMOTELY interesting was the affect on growth, and still no data.  I need data folks.  It's the Star Trek in me.  (Sorry, I'm just getting jittery here.  He keeps droning on...)

[texasmama]

OhE, that was hysterical! :lol:

 

For kicks, here is some data:

 

Half life of Ritalin and Ritalin-like substances:

 

The half-life of methylphenidate from IR tablets is about 2.9 h; about 3.4 h from ER and SR tablets and capsules; 6.8 h from Metadate CD .

Daytrana : Mean elimination half-life in children 6 to 12 yr of age is approximately 3 to 4 h.

Half-life of Prozac:

The relatively slow elimination of fluoxetine (elimination half-life of 1 to 3 days after acute administration and 4 to 6 days after chronic administration) and its active metabolite, norfluoxetine (elimination half-life of 4 to 16 days after acute and chronic administration), leads to significant accumulation of these active species in chronic use and delayed attainment of steady state, even when a fixed dose is used [see WARNINGS AND PRECAUTIONS]. After 30 days of dosing at 40 mg/day, plasma concentrations of fluoxetine in the range of 91 to 302 ng/mL and norfluoxetine in the range of 72 to 258 ng/mL have been observed. Plasma concentrations of fluoxetine were higher than those predicted by single-dose studies, because fluoxetine's metabolism is not proportional to dose. Norfluoxetine, however, appears to have linear pharmacokinetics. Its mean terminal half-life after a single dose was 8.6 days and after multiple dosing was 9.3 days. Steady-state levels after prolonged dosing are similar to levels seen at 4 to 5 weeks.

The long elimination half-lives of fluoxetine and norfluoxetine assure that, even when dosing is stopped, active drug substance will persist in the body for weeks (primarily depending on individual patient characteristics, previous dosing regimen, and length of previous therapy at discontinuation). This is of potential consequence when drug discontinuation is required or when drugs are prescribed that might interact with fluoxetine and norfluoxetine following the discontinuation of PROZAC.

Apples and oranges comparing Ritalin to Prozac.

[PeterPan]

-Vague, vague, vague.  Do not think, don't ask for data.  Just read the conclusion of this guy who can't write a clean sentence.

-Wow, these parents in Australia were willing to commit FOR TEN YEARS not to change their minds on their dc's ADHD treatment???  You are joking, right?  Like, um, no ethical qualms there, lol.  My ds isn't on meds, but his issues are severe enough I SURE wouldn't sign some form saying yeah 10 years with no meds.  That would be STUPID.  So please tell me that if we dug in on the data we'd actually have some BRIEF or EF survey forms so we could evaluate severity and maybe see if there was a statistical correlation there...

-Ok, you DO see the flourishing of this, right?  NO DIFFERENCE.  That's his claim.  Put kids on meds, and a year later, NO DIFFERENCE.  And really, since that's what he claims the studies are showing, it's honestly a wonder that insurance companies are willing to pay for the meds.  The insurance companies are getting scammed.  They should be selling vitamin C pills for the price of ritalin, since ritalin makes NO DIFFERENCE.  You read it here folks and this guy is telling you.  Sub out your kid's ritalin for vitamin C, save the money, because every study shows it makes NO DIFFERENCE.

-And you know the best part about this?  Since it's not going to improve behavioral, social, or academic outcomes, no matter what you think, that means your child is hopeless!  And since he's hopeless, why are you bothering.  I mean, it's just so comforting to know this.  Your situation is HOPELESS.  Do not believe meds could make any difference over the long haul, because they can't.

-Please explain to me what a "specialty mental health clinic" is?  It's actually a really good question he's hitting on, but his analysis is so shallow, once again.  Without explain which populations are more likely to be using a "specialty mental health clinic" or whether those populations had a family history of mental illness anyway (ie. it was always there, now it's getting identified) he just implies you put your kid on ritalin and they're going to develop a mental illness.  

-Hehe, new slide.  Indeed, that's where this was going!  And these ARE FAIR DISCUSSIONS TO HAVE.  But man it would be better to have them with someone who can actually have a COMPLETE discussion.  Nuts, I think any of the moms on this board could explore it more deeply than what it looks like he's going to.  WHY are you having this rebound effect after the meds??  It's not shocking, but if there is this rebound effect, then is there anything to DO about it?  Do break periods like what one of the people mentioned (on 12-18 months, off 3) make a difference in that?  Is there any study on that?  Have they looked at the chemistry of the rebound process to chart it exactly and see what typically happens so parents can make informed decisions?  Is that PERMANENT or is it something that rebounds and reverses with time?  I can't believe that these processes are as pat and absolute as his inflammatory approach implies.  Rebound is NORMAL when you've been doing something that messes with the body's chemistry.  I think if people approach that in an INFORMED way, making INFORMED CHOICES, that's their business.  We don't have to be ignorant about this, and we all know there is no such thing as a ritalin deficiency.  But that doesn't mean we can't choose to get in the middle of that process, just because there are rebound/withdrawal issues.

-He lists a bunch of other side effects.  Are these considered ACCEPTABLE or does this get back to the question I've wondered about, which is what role economics and access to care plays in how finely tuned someone gets the meds?  If it takes many appts and many trials with different kinds and doses of meds to get an approach that works for the patient, then how many people are REALLY getting that?  Or, more to the point, when people have that kind of cadillac care and DO get that, DO they have these side effects?  I mean, just be straight?  Do they or are these because of poor fit?  I'm not saying are kids being medicated in ways that have those effects, because we know that happens.  But I'm saying does it HAVE to be that way or are there OTHER factors involved?

-His list mentions growth.  I do think this is an issue.

-Back to the pathetic "no benefits on any domain of function" mess.  For a population.  When you average out the "my kid fidgets" with "my kid impales himself" you get "no benefits on any domain".  

-Ok, now this is interesting.  We've been talking about this in this thread.  He's saying over the course of 4 or 5 years, the ups and downs of the meds no meds during the day would result in cycling that would turn into bipolar or schizo affective.  That's a really serious accusation, honestly. It would be interesting to know what the generally accepted pathways into bipolar are.  It would be interesting to ponder why bipolar overlaps so much with ADHD/ASD and ask whether it's actually that you're making it happen or that the genes were there.  I think people's bodies become so taxed that their ability to regulate gets really snapped.  So is the ritalin pushing that?  That's a really interesting question.  But then how about some DATA.  Like ok, we can actually have some DATA here.  That interests me, because it's interesting to ponder what the effect is of the meds. Dunno.  But he's also saying it's like rev reving the system, and I don't know.  I don't know that people are saying that.  And by that logic bipolar should be higher in the cocaine using population (as a side effect) or maybe even in the caffeine population.  Because people know full and well their 30 years of caffeine use is driving their system up and down, up and down.  And they really might become bipolar doing that.

 

This video will never end, sigh.  I'm only at 32:13.  But I like hearing the bipolar argument.  Just needs more meat, because right now he's at theory.

 

-Uh oh, back to incindiary quotes.  Talking withdrawal.  Yeah, he's finally asking if it normalizes!  It changes gene expression?  Ahh, but then there is research showing it does renormalize.  They didn't know in 2010.  Let's find out now in 2016.  Because I think that really matters.  

-Oh dear, can you imagine these animals in the studies?  What animal would you pick to represent your dc?  LOL  Rats?  Monkeys?  I want him to say rabbits.  But were these animals ADHD?  Or there is no ADHD pathology diagnosed in animals?  They can induce cancer and all sorts of diseases in critters.  But are they somehow managing that with the critters for ADHD studies or it is more like average dopamine levels and see what happens?  That's like saying I studied thyroid meds on euthyroid rabbits and concluded hypothyroid humans don't need thyroid meds.  No screwy logic there.  I mean, if they can actually demonstrate low dopamine levels in the kids, then this should not be so rocket science.

-So his BIGGEST CONCERN is kids converting to bipolar.  That's really fascinating.  He's building a strong case there.  It's actually really interesting.  Ok, this is FINALLY interesting.  I'm not really knowledgeable enough to question it.  It's very interesting.  So, ok, say you decide you're going to medicate your dc with *caffeine* instead of ritalin.  Would you get the same effect?  Kids all around the world drink tea.

-He's citing juvenile bipolar rates (then, in 2010) as around 1 in 50.  If that's the case, that's high like the ASD diagnoses.  And researchers at MIT are tying that to other things like the increase in use of RoundUp.  So what if these rates have NOTHING to do with this?  Or what if they would have gone up ANYWAY?  And he's saying the rates of kids using stim meds and flipping to bipolar are "high" but then what about a quantification for the kids who use the meds and DON'T flip to bipolar?  I don't choose safety based on relative risk like that (just me), but I think it's reasonable to ask.  If 99% of kids using Ritalin DON'T flip over to bipolar, then that's pretty insidious to imply it's a high rate.  What is that rate?

-So that's 41 minutes in and we got to his biggest beef, that it is flipping kids to bpd.  Now to summaries.  Please don't get boring again.  I think he's back into persuasion and telling us what to think.  Shy on data and always telling us what to think.  Please say there will be Q&A or something interesting.  Drone, drone, boring.  You've turned your dc into a mental patient by putting them on meds.  

-Oh, it wasn't a 2010 video, because he has a 2012 quote.  Good, gotta look this dude up.  Sroufe, author of Ritalin Gone Wrong.  But apparently Sroufe didn't think the bpd risk was that strong, because when given the chance to slam and lay it out, stunting growth was his top negative.  That's a negative, definitely, but it's not the same as bpd.

-Yeah, we're finally to counterpoints!!  But here's your problem.  As a journalist, he has concluded that you should not go off your meds.  So your doctor telling you on, then break, that was all wet.  Crime rates are higher with that on/off, on/off group.  

-Jaffe, advocate who can be pro laws for forcing meds, which we talked about. That concerns me.

-So Shire and Oregon look at the lit and come to the same conclusions.  Either way, the best spin only shows half the studies as showing ANY benefit and the other half have no benefits or worse.  

 

49 minutes in.  I will not die.  Don't worry, he would NEVER cherry pick his data, he assures us.

 

-Now see, this is interesting.  The whole mental illness issue is complicated.  To have that discussion though about whether ritalin is playing a role, that's interesting.

-Hurray, 52 minutes in and we have clapping.  Now for Q&A.  How nice to hear Sroufe pronounced.  Quite the name!  But back to this stupid argument that not changing something over a population means we shouldn't act for the individual.

-See, this makes sense.  When he says pharma + psychs are in business to spin it as deficiency so they can pan the drugs.  That makes sense.

-But look how blanket this is.  No discussion, on his part, of whether some situations outweigh others.  It's SO EASY to have these sort of absolute convictions and say oh it's causing harm, without looking at the situations where the child is experiencing ACTUAL HARM *not* having the meds.

-Hurray.  Now we know that schizophrenia, ADHD, everybody is actually better off WITHOUT meds over the long haul.  Don't look at anyone in your family who got meds and is BETTER for it, like life-alteringly better.  Because he read a study that said for a population schizo drugs aren't necessary.  Your relatives are just on unnecessary meds and being harmed.

 

Can we NOT have some common sense and distinguish things???

 

Ok, it's about to end.  Let's ponder implications.

[PeterPan]

Ok, so he wants everyone to confront the data that, for a population, meds do not alter outcomes and may, according to 50% of studies, give worse outcomes over the long haul.  Fine.  And he wants to say our kids will have stunted growth and increase their probability of flipping to bipolar.  

 

And let's just say there are situations where the meds are desirable and other situations where the meds are LIFE-ALTERING.  Where we're really talking safety and serious things.  And let's just say there's a quibble there, because maybe academics ARE serious to some people and really a reason to put that on the line.  Let's just say that's valid too.

 

So then, ok, this guy is offering no social action plan here, nothing realistic that he's saying as the ALTERNATIVE when people really are at the it's dangerous, it's disastrous, it's whatever-rous NOT to choose the meds.  Or is he, when pressed, actually back-pedaling for certain kids?  Or is he saying no for nobody never?  I mean, that's not a very practical approach, to just say no I don't think ANYBODY should have access to the meds because EVERYBODY is at risk for grave harm.  Set it up like that, but then you've got to be honest about what you're REALLY saying.  And I keep pointing this out, but he was not giving us studies showing differentiation for severity of for ASD + ADHD.  And, I'm sorry, but we've got some pretty serious levels of behavior people are talking about on this board.

 

So I think the logical thing is for AM or someone to write this dude and ask him straight.  Because I think it's unreasonable for him to put forward a scare tactic approach and not offer practical solutions for the extremity of the population affected by his advice.

[PeterPan]

Ok, I think the only data that would be pruned enough to be helpful would be long-term outcomes of ADHD-combined + ASD on meds and no meds.  That would be data to see.  As long as we have ADHD diagnosed at the drop of a hat by peds, we cannot POSSIBLY have generic ADHD studies tight enough to tell long-term outcomes with more severe cases.  

Edited January 24, 2016 by OhElizabeth

[PeterPan]

OhE, that was hysterical! :lol:

 

For kicks, here is some data:

 

Half life of Ritalin and Ritalin-like substances:

 

The half-life of methylphenidate from IR tablets is about 2.9 h; about 3.4 h from ER and SR tablets and capsules; 6.8 h from Metadate CD .

Daytrana : Mean elimination half-life in children 6 to 12 yr of age is approximately 3 to 4 h.

Half-life of Prozac:

The relatively slow elimination of fluoxetine (elimination half-life of 1 to 3 days after acute administration and 4 to 6 days after chronic administration) and its active metabolite, norfluoxetine (elimination half-life of 4 to 16 days after acute and chronic administration), leads to significant accumulation of these active species in chronic use and delayed attainment of steady state, even when a fixed dose is used [see WARNINGS AND PRECAUTIONS]. After 30 days of dosing at 40 mg/day, plasma concentrations of fluoxetine in the range of 91 to 302 ng/mL and norfluoxetine in the range of 72 to 258 ng/mL have been observed. Plasma concentrations of fluoxetine were higher than those predicted by single-dose studies, because fluoxetine's metabolism is not proportional to dose. Norfluoxetine, however, appears to have linear pharmacokinetics. Its mean terminal half-life after a single dose was 8.6 days and after multiple dosing was 9.3 days. Steady-state levels after prolonged dosing are similar to levels seen at 4 to 5 weeks.

The long elimination half-lives of fluoxetine and norfluoxetine assure that, even when dosing is stopped, active drug substance will persist in the body for weeks (primarily depending on individual patient characteristics, previous dosing regimen, and length of previous therapy at discontinuation). This is of potential consequence when drug discontinuation is required or when drugs are prescribed that might interact with fluoxetine and norfluoxetine following the discontinuation of PROZAC.

Apples and oranges comparing Ritalin to Prozac.

Thank you Texas!!  That's sorta what I suspected, but I wouldn't have guessed it was THAT dramatic.  I don't know, maybe taking science classes isn't a requirement for being a science reporter?  Mustn't ask WHY when you're building these persuasive cases.  Must just read and regurgitate, read and regurgitate.  

 

But really people, we can THINK.  And you know me.  I'm the one who doesn't have either of my kids on meds (at this time), meaning I clearly have found enough thought process that I've chosen not to do this.  I'm not antagonistic to the dude in that sense.  I'm even receptive.  But it's so INCOMPLETE an analysis.  How about going back through data and saying ok, for kids who started off at this severity, with this level of scores on the brief, or with comorbid, or with ADHD *plus* ASD, these are the outcomes.  And how about some actual data on anxiety, depression, aggression, bipolar, etc. for THAT population.  Because I really don't think most of us are talking even just like oh he fidgets.  A good chunk of us on this board are dealing with serious, serious behavioral challenges that meds are KNOWN to help with. 

 

What did you think about the gene expression alteration argument?  That was kind of in the weeds.  That study ought to be done, so we could try to google for it.  You never know.  I mean, curious things happen that no one understands till they discover it, so why not, lol.

 

I hear a Yoda voice, but only because we watched the last movie which used to be the third movie.  I have no clue how that applies to any of this, except a Yoda voice ought to be very comforting right now.

 

https://www.youtube.com/watch?v=dE8RiWHoMVI

[texasmama]

I did not watch the video. I knew i could depend on you to do what you did. 😀 But I knew the approximate half life of Ritalin and of Prozac so I could not let that one fly by without comment.

 

There are so many factors and variables and comorbid diagnoses that a solid study with useful information on ADHD and meds would be really difficult to pull off.

[PeterPan]

Happy to oblige!  :D

 

But you know, I'm googling this now (while I'm yawning, time for bed!!), and it seems like psychs are doing ritalin plus mood stabilizers for bipolar, that it's comorbid 10-20% of the time.  So if they can figure out how to treat that without sending the person sky high, that really undercuts the idea that the ritalin is causing it.  Or maybe it sort of is?  I definitely think it's an interesting topic.

[texasmama]

It is the SSRIs that are contraindicated for Bipolar because they tend to bring on mania. Mood stabilizers are typical for treating it. I didn't realize the comorbid incidence of ADHD and Bipolar was so high.

[PeterPan]

Ok, that made a couple things click.  I'm not saying much here, just saying it made things click.  And, interestingly, the "mood stabilizer" they put people onto in that situation is Depakote, which is also used for seizures.  My grandma was on that and it wasn't for what you think of as seizures.  They were a blackout, and we were told her brain did not rest properly so it would go and go and then just black out. She had NO symptoms of bipolar, adhd, or any mood instability AT ALL.  I just think it's really fascinating when you think hard about this.  

 

Ok, so I'm reading this, which is probably about as reliable as a potato chip bag...  Facing The Diagnostic Challenge of Comorbid Bipolar Disorder and ADHD  and it does seem like there's some trail covering.  Like to say ok, we normally diagnose bpd at 18 and now we're seeing it avg 13 with the meds, responds well to the mood stabilizers, that's NOT REALLY fessing up with DATA on what's really going on. I'm assuming there are studies showing adult bpd rates in unmedicated ADHD, so people can actually see what would have happened (statistically, over a population) vs. adult bpd rates in those who are medicated in childhood.  Or is his allegation that nobody is bothering to do that research?

 

Or let's be a little more blunt.  If you go to Autism.org and look at the supplement they sell (marketed to people with ASD as sort of a generic, good for most people with ASD, take this, kinda thing), there's LITHIUM in it.  Oooo, oooh, let's get all wowed...  I mean REALLY we have to be confused about this?  Dig in on the stats.  What IS the comorbidity of bpd in the ADHD-combined (the severe stuff) group?  And what is the comorbidity in the ASD community?  There are surely stats on that.  

 

Remember, I'm from a background that tells people you're SINNING if you take lithium.  I KID YOU NOT.  Because bipolar doesn't exist, adhd doesn't exist, any behavioral problems you have in autism are because you wouldn't swat your kid on the face and be firm enough...  So this guy is making NO DIFFERENT ARGUMENTS in reality than those people.  They're saying it doesn't exist, and he's saying the meds cause it.  But I go back to the practical point.  Say there's no data to explain it.  Say they haven't fully sorted out the brain chemistry and genes.  SO???  At some point, you have to deal with the reality in front of you.  Untreated bipolar plus ADHD leaves people homeless, jobless, and destroyed.  And if the ritalin hadn't brought it out, maybe the stress of college would have.  And these people saying it's such a great sin and horror to give a kid ritalin are willing to be addicted, utterly and shamelessly, publicly addicted to coffee.  And these people saying it's such a horrific thing then to put someone on lithium, that we shouldn't use lithium because it's a mood stabilizer, ignore that GOD GAVE IT TO US!!!  It's in the WATER for pity's sake!!!  Just go buy Perrier and you can get a consistent dose.  Every day.  And there are people managing their symptoms with this.  

 

So really, I get SO TIRED of incomplete research, scare tactics, and people who are willing to freak people about without being honest about REALITY.  Because reality is your kid might end up on some mood stabilizers someday, whether you give him ritalin or not.  Reality is your kid might end up homeless or jobless someday because of his instability.  Look at all those people on the street and remember they were somebody's little boy, somebody's BABY once.  That's what I do.

[PeterPan]

ADHD in Children With Comorbid Conditions: ADHD and Bipolar Disorder

 

They're dancing around it, but they say it.  10-22% of kids with an ADHD diagnosis (which we'll just assume means meds, because a ped diagnosis gets you a scrip) end up with a bpd diagnosis later.  That's pretty wicked high.  So then what is the rate for adults?  I mean, think how squishy this is.  The article says 57-98% of kids with bpd have an ADHD diagnosis.  So the video dude IS CORRECT with this line of fire.  BUT I go back to my point.  Are these kids who WOULD HAVE eventually converted over into bpd anyway?  He's not asking that, but I sure think it's a reasonable question.  

 

Bipolar and ADHD Comorbidity: Both Artifact and Outgrowth of Shared Mechanisms

 

Ok, so I'm reading this article.  It's saying the truth, that this was a spectrum of behavior, that the diagnoses are artificial boxes.  But I want to see if they ask the question of whether meds are correlated to pushing that over.  But I think that's a big point, admitting that this is all a spectrum, not utterly, utterly disconnected.  

 

Oh, they're finally slamming the DSM in the article!  I LOVE when people slam the DSM.   :D  (Note their poker illustration.  I don't even know how to play poker.  Yet.)  Uh oh, now they've done it.  Now they're talking nucleotide polymorphisms, and you know how that thrills a homeschool mother's soul...  So they fess up!  One single nucleotide polymorphism, MULTIPLE OUTCOMES.  Big shock.  We knew that.  And NORMAL was one of the possible outcomes!  We knew that too.  And hmm, let me guess, changing status was possible too.  

 

Now, time for your "word of the day".  Apparently PRODROME is the word we all want to learn.  They're considering ADHD a prodrome to bpd.  Then they fess up, and don't miss it, the very thing I was saying, that "the high estimate was a consequence of the recruitment pattern, not a product of PBD itself."  

 

Oh no, no one would ever do research and give statistics on a community more likely to reveal the results they wanted to see.  Oh no, wouldn't do that...  

 

Love this.  Clinical studies are leaving out hypomania without depression, because the college students they're studying LIKE their hypomania without depression.  Wow, we are shaking our heads, right?  

 

And I just want to digress here a minute.  I only have one strong opinion, and that's that once you're in the pickle you treat it.  You don't leave someone homeless, jobless, and with a life falling apart.  You just don't.  But WOE to meds, people, situations, etc. that bring this stuff on.  Because this whole idea of things being prodromal, that it was there latent and got pushed over, that's pretty serious stuff.  And yet I also can't get to the flipside and say people should be freaked out to put their kids on the meds lest the meds push them over, because they would probably have pushed over eventually anyway.  Or let's see stats on that.  But would they have?  I know the things I see with the people I deal with.  

 

Now back to the article.  It mentions calcium channel functions, and this is a pet interest of mine.  My grandma had calcium oddities.  The article seems to be saying same genes but multiple expressions.  (BPD parents but ADHD kids with no bpd, etc.)  That's really interesting to ponder, because I think it highlights how complex this stuff is.  

 

Nope, they explore the prodromal thing, admit ADHD is a risk factor for BPD, and then don't explore whether it's TREATED ADHD that is the risk factor for the BPD.  That's a totally reasonable question.  Of course, remember it's journalists and light weights who brought us the brilliant suggestion that VACCINES were responsible for autism, that oh the amish have no autism and they don't vaccinate.  So then please see the stats on unvaccinated kids with autism, cuz I know some.  They exist.  Maybe vaccines make it WORSE.  I could totally be on board with that, given the current total load theories.  But just to say oh vaccines "cause" autism, that's a really SHALLOW argument.  Not without water, but it's SHALLOW.

 

Now this is interesting.  The article is saying they're going to obfuscate causality by labeling the bpd PRIMARY when comorbid, since the bpd is considered more severe.

 

Even weirder, the article seems to be advocating for increased bipolar diagnosis of kids!  Look hard at the conclusion.  It's saying if you would take the time to do the mental eval, you would turn up the bipolar.  So there you go.  The science community's answer to our friendly journalist is that we need to do better evals, ditch the ped diagnosis, and look harder for bpd, that it was there all along.  Gets even more interesting.  The authors say the parents should be told that their ADHD symptoms are actually prodromal for bpd.  And they cite MTA as saying the stim meds WON'T cause an adverse reaction with the prodromal bpd, which is the opposite of what our journalist told us.

 

So it's definitely confirming much of what our journalist friend is saying.  The only problem is, it raises more questions than it solves.  But here's a little something to raise your eyebrows.  PubMed  Click this and it takes you to a quickee summary (hopefully) of that MTA research they refer to at the end.  And, indeed, that study found that in kids prescreened for prodromal symptoms of bpd, there was no aggravation of it by the stim meds.  Now that was short term.  Our journalist was kind enough to say it takes 4-5 years.  So let's keep looking for studies.  I'm just saying this is a discussion they can actually have.

 

And I still go back to this problem.  This journalist is willing to use data from a population to answer questions for individuals.  We don't gamble with our kids, and our kids aren't statistics.  We have ONE situation to solve, the one in front of us.  And I'd really feel better about that journalist's thoroughness if I knew he had a little something in his background, maybe a family member with some challenges, to help him ask a few more questions and try a little harder.  Because I think good people could read that research and say, you know, I think for MY situation, this is still the way to go.

 

 

Edited January 24, 2016 by OhElizabeth

[nature girl]

OhE, this cracked me up! But I was actually looking for counterpoints when I posted the video (just didn't expect them in so much detail, haha!) But thank you for that.

 

I agree with you about the lack of specific data in the areas where it would be most telling, that bothers me too. The speaker in the video could only cite the general information that exists, and yes it's not enough. I know this population is really hard to study conclusively, but it's POSSIBLE to look at severity vs. long-term response; even if the MTA population shifted treatment within the 8 years it's POSSIBLE to separate people who were never medicated from those who were, and from those who used meds the whole time. It's possible to look at whether symptoms worsened from pre-treatment after meds were stopped, whether the population was actually harmed by taking the meds. Get a statistician to look at the data in more detail! It shouldn't be all that hard.

 

And I'd think it would be very easy to compare the incidence of juvenile bpd in kids who were and were not treated with meds. This is a crucial study! Why was it never done? Did the kids who developed bpd show any warning signs outside of ADHD symptoms before it developed, which really should have been caught? (I did see videos that showed the history of kids who were initially treated for ADHD, didn't get better on meds, and then within several months were found to have bpd. One boy was severely ADHD, showed anger and ODD but no sadness, went on Ritalin and suffered severe depression, they took him off Ritalin and BAM he started cycling and now has fullblown bpd. That's scary, because it does seem like it actually was triggered by treatment.)

 

I just don't understand, with the prevalence of ADHD, why there are so few studies like this that can help parents make informed decisions. And OhE, I hear you about looking at a population rather than an individual, but since we don't know how our individual child will react, whether they'll actually be made worse long-term, the population is all we can look at. My DD isn't impaling herself or running out in traffic (she actually isn't a risk-taker at all) but she has many severe behaviors that keep her from having good friendships and being able to experience all life has to offer. And stress our family. So we're in this in-between land, she can live without meds but isn't living her best possible life, and we need more concrete data to help us decide whether the risks are worth the benefits.