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


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http://www.ncbi.nlm.nih.gov/pubmed/17064428/

 

Rate, risk, and predictors of switching from attention-deficit/hyperactivity disorder (ADHD) to a prepubertal and early adolescent bipolar I disorder phenotype (PEA-BP-I) were examined in a blindly rated, controlled, prospective 6-year follow-up that included assessments at 2-year intervals. Subjects were outpatients obtained by consecutive new case ascertainment. There were 81 subjects who were 9.7 +/- 2.0 years. Subjects had DSM-IV ADHD (hyperactive or combined subtypes); a Children's Global Assessment Scale (CGAS) score of < or =60, consistent with moderate-severe impairment; and no BP or major depressive disorder (MDD) diagnoses. PEA-BP-I was defined as DSM-IV BP I (manic or mixed phase), with cardinal symptoms (elation and/or grandiosity), to avoid diagnosing mania by symptoms that overlapped with those of ADHD, and by a CGAS score of < or =60. Morbid risk of switching to PEA-BP-I was 28.5%. Significant predictors of switching in a multivariate Cox model were more severe baseline CGAS, paternal recurrent MDD, and less stimulant use. BP I in first-degree relatives, antidepressants, psychosocial measures, and life events were not predictive.

 

(Less stimulant use???)

:svengo: I'm with you!  And I hope you'll keep researching this and turn up more data, because that's pretty wild.  And I think it's helpful to move beyond the generalities of this journalist's talk and into the real specific meat here.  We don't have to accept vague statements.  We can read the studies for ourselves and say ok, this is the actual risk, this is the category the risk is highest in, this is or is not a situation I'm comfortable with.  

 

And I think we have to balance things like 28% of severe ADHD kids flipping over to BPD diagnosis once on the meds with points like from Misu, Kbutton, etc. that the meds literally TURNED ON A LIGHT that allowed them to work together.  From not working together to working together.  That's huge.  That's life altering TOO.  And those are pretty unhappy alternatives to think through, but on the other hand it's not this seeming 99%, and I repeat ****99%**** kind of thing this guy was implying.  It IS probably reasonable to say 60-90-some % of people with BPD are showing EF/ADHD symptoms.  But to imply shocking amounts of kids with ADHD who are put on meds will flip over to BPD and that they WOULD NOT HAVE EVER if they had not been given the meds, that's pretty severe.  I still want facts on that.

 

And, you know, if it's your kid, that 28% is real.  I'm not saying the conclusion we have to come to on that, just that, for me, that journalist was overstating the risk and reality.  So I say keep digging, keep looking for these numbers.  What ARE the stats on severe ADHD developing into BPD over a lifetime?  Are there stats on this?  Can we compare that % to this % for kids who take the meds and flip?

 

And then, really, what in the WORLD does that mean about less medication??  Like, if you're anxious as a parent about side effects and are, on today, off tomorrow, trying to use smaller doses, etc., you actually get less stable results and MORE mental health problems than if you dose up completely and just do it every day?  

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I am not even sure if I should read the updates--I might have a life to live sometime, lol!

 

For the record, my son was never buzzed, hopped up, etc. on the one dose of long-acting stimulant he tried. He was awake. He was also calm, collected, happy, productive, relaxed, engaged with life, and not at all bothered except to talk a little bit about how weird it was to be awake when he would normally be asleep or very, very cranky from being up. Please don't say he was whatever term was used half a thread ago because that's completely untrue.

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I am not even sure if I should read the updates--I might have a life to live sometime, lol!

 

For the record, my son was never buzzed, hopped up, etc. on the one dose of long-acting stimulant he tried. He was awake. He was also calm, collected, happy, productive, relaxed, engaged with life, and not at all bothered except to talk a little bit about how weird it was to be awake when he would normally be asleep or very, very cranky from being up. Please don't say he was whatever term was used half a thread ago because that's completely untrue.

Actually hopefully I asked that as a question.  If I didn't, I apologize.  That was actually a question I have, like what DOES happen in these kids if they get a bit much or not the right mix for their system at that time?  So you're saying in your ds' case he was *awake* but had no agitation, manic behaviors, over the top or grandiose behaviors, etc.  It was just GOOD, awake but good.  That's amazing.  And then what happens in a NT person if you give them a similar dose?  Would they just feel good and stay awake, or would they have other, more extreme reactions?

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Well see our cherry picking journalist friend didn't want us to read THIS study.  Just the other ones.  ;)  So yes, this study shows a mercifully low incidence of anti-depressant, SSRI, and stim med induced BPD.  

 

And, you know, I think it's really ok to say 2%, 10%, those are stats I'm not willing to live with that.  But I don't think it's ok to imply it's "high," whatever "high" is and not even be ACCURATE.  And then, we go back to that question.  What would those stats be in the ADHD population.  We just saw another study with a much higher percent with much more severe ADHD.  So there are populations more in that high risk category.  

 

We all make choices every day.  The rate of vaccine reactions is very high.  Oh please, let me play journalist a minute.  The risk is VERY HIGH.  And, nuts, I can tell you STORIES of vaccine reactions and lives altered.  And yet parents every day decide the benefits outweigh the risks, that they're willing to watch for the risks and pull back if warranted.  It's VERY EASY to make freaky cases against vaccination, and yet most people here have probably chosen to do that.  

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You know, ironically enough I came into this thread pretty anti-med for my own kids.  Not like I've said no, because I reconsider that and evaluate that frequently.  The research I had done had turned up so many freaky things that I was in the REALLY kind of category, like why REALLY would I do this when there are these kind of risks???  

 

But I'm looking at this guy and his arguments and how full of HOLES they are, and I'm back to my REALLY again.  Like REALLY you can't give me more accurate, strong evidence?  Because I CAN get evidence saying that, for specific children, the meds can be life-altering.  And even our journalist friend ADMITS THE LEVELS NORMALIZE.  So he's lying through his teeth, on the one side portraying doom (to sell his book of course) and then oh so politely letting out that in reality the levels will normalize, the change isn't permanent, and it's a CHOICE.

 

And as far as bad life choices and addictions, we can't guarantee the outcome for our kids no matter WHAT we do.  We can take them before God, teach them, pray for them, but they're going to choose and they're going to live with the consequences of THEIR choices.  Those meds aren't going to MAKE someone go do drugs and alcohol.  And personally I go back to my hypocrisy line, that people excuse their own legal addictions (caffeine, sugar, whatever) and get all righteous about someone else's.

 

So I'm still waiting.  Because we have clear evidence that it can be life-altering for severe cases, that it's over-used for the population, and that the rates of negative reactions are low.  I agree we're not showing data that it's fixing problems or making things going away.  It's just a pragmatic choice.  And I think pragmatism can be ok.

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Actually hopefully I asked that as a question.  If I didn't, I apologize.  That was actually a question I have, like what DOES happen in these kids if they get a bit much or not the right mix for their system at that time?  So you're saying in your ds' case he was *awake* but had no agitation, manic behaviors, over the top or grandiose behaviors, etc.  It was just GOOD, awake but good.  That's amazing.  And then what happens in a NT person if you give them a similar dose?  Would they just feel good and stay awake, or would they have other, more extreme reactions?

 

It seemed like more of statement within a question, but that's okay. I just wanted everyone to know that it was a good reaction, just extreme on how long it lasted. It was a blip in your post, but I saw it because it was attached to me, lol! You're okay.

 

I believe they gave stimulants to WWII pilots who had to fly those horribly long missions, make critical decisions, and do it all with some amount of precision. But, I don't know if that's NT--these men were under duress that I think would be comparable to the kind of hit ADHD gives to your working memory and such. They were high in the air, cold, tired, hungry, etc. That's very distracting, and pilots experienced some of the most dangerous combat in the whole war. The fatality rate was astronomical. 

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THUNK.  That was my jaw hitting the floor.

 

Wow.  So in a population of 106, where at least 1 parent was confirmed diagnosed with BPD, there was NO correlation of stim meds and antidepressants resulting in earlier diagnosis of BPD?  Wow.  Because that was our question.  Like, when you just get really honest about it, is there or isn't there an effect where it's making them get diagnosed earlier.  

 

And to me, I'm still ok with someone saying that's fine for a population but I'm not taking a risk with MY kid.  I'm fine with that, because I think that's the right thing to do, to make the choices that make sense to you.  But when there's not statistical evidence to back up our journalist friend's assertion that the rise in use of meds is increasing AAO of BPD or risk of BPD, that's a problem.  I mean, at that point what he's down to is saying those kids shouldn't have ever gotten diagnosed.  And then we get these funky situations like ok, ASD diagnosis is up.  Is it up because the genes are worse and the actual occurrence increased?  Or is diagnosis up because we're actually diagnosing more?

 

Me personally, I think rates are up because we're just getting more degraded in our genes.  But I can't help that.  Like what, we're going to imply people have no right to be born or less care should be given to poor communities so their rates can go down?  I mean we could just as easily say rates are going up because we have particular politicians in office.  Please find some grandiose correlation (changing the formula of Nesquik) so we can all just acknowledge the REAL cause of these changes.

 

I have no clue.  Maybe it's a BIG SCAM and you have to do some kind of longitudinal studies over a period of 10 years to show what's going on.  Maybe our rates are going up because kids are on meds.  Or maybe kids are on meds and getting more care.  Maybe they're kids who, in the past, would have been stuffed into some corner of a farm, doing things, surviving, and now we have this very different culture where all these people have to assimilate and look the same in order to survive.  We're all supposed to go through this socialist system, with similar schooling, similar medical care, then go to college (because it should be free), etc. etc.  NEVERMIND that some people were never really best suited to that path.  

 

I don't know, I have no solutions.  I wish I did.  I think it's pretty striking when he has stats on how many kids who were diagnosed with juvenile BPD had also been on the stim meds.  But then was that really just a reflection of trying to deal with serious challenges?  Isn't it just REALITY that some kids are really challenged, that life isn't fair?  I mean, you have to have some way to explain that those kids are on but that the MAJORITY, upwards of 80-90%, take the stim meds and never even come CLOSE to warranting a BPD diagnosis or having prodromal symptoms.

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But to imply shocking amounts of kids with ADHD who are put on meds will flip over to BPD and that they WOULD NOT HAVE EVER if they had not been given the meds, that's pretty severe.  I still want facts on that.

 

And then, really, what in the WORLD does that mean about less medication??  Like, if you're anxious as a parent about side effects and are, on today, off tomorrow, trying to use smaller doses, etc., you actually get less stable results and MORE mental health problems than if you dose up completely and just do it every day?  

 

A couple of thoughts...what if the EF/ADHD profile is masking these symptoms of bipolar, so you medicate, and then what you see is bald bipolar characteristics left after you remove the ADHD symptoms? It sounds like this group may be fictional anyway, but that's just a thought.

 

I know a kid with a strong family history of bipolar (and maybe a diagnosis), and s/he takes ADHD meds, and they are fantastic for this kid. Actually, now that i think of it, I think I know two kids with dual diagnosis. Life without stimulants is not good for them. I can't answer follow up questions because I am not comfortable saying more. I totally forget that they have dual diagnoses IRL. It's the ADHD that leaves a greater impression on me in the situations I see. 

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Kbutton, the journalist is trying to build the case that there was almost no juvenile BPD before, that there has been a radical increase in diagnosis of juvenile BPD, and that in fact the up/down process of the meds during the day creates a cycling process that precipitates BPD.  So his assertion is that stim meds create a permanent change that result in BPD.  He cites statistics on the current high rates of juvenile BPD diagnoses, which previously had been very low, and stats that basically ALL those kids (pretty much, like 98%) had previously been on stim meds.  So from his perspective as a scientific journalist, the stim meds are CAUSING the juvenile BPD.

 

So I'm just coming in with all these questions, like are these kids more likely to be on medicaid, are they a population more likely to have developed BPD anyway, is this actually increase in diagnosis rather than just increase in incidence, etc.  Those seem like reasonable questions to me, because when you just take his conclusions and info at face value, without question, you come out pretty freaked out that putting your kid on meds makes them radically more likely to develop vicious BPD, something obviously no one wants for their dc.  

 

In fact, if you have experience with multiple kids who in fact DO have both, when it was (previous to the development of meds) a relatively rare diagnosis at all, that really does speak to what he's talking about.  And I know you don't want to talk about specific people or specific situations.  But that is the sort of scenario he's talking about, where seemingly someone had no prodromal indications at all, takes the meds, and bam begins cycling and develops BPD symptoms.  So then the question is whether this is higher identification of what would have already happened or causative or what.  That's why AM is pulling up studies, and nothing she pulls up supports what this guy is saying, even though I think we can ALL AGREE that an increase in diagnosis of juvenile BPD is concerning, no matter WHAT the cause!

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Kbutton, the journalist is trying to build the case that there was almost no juvenile BPD before, that there has been a radical increase in diagnosis of juvenile BPD, and that in fact the up/down process of the meds during the day creates a cycling process that precipitates BPD.  So his assertion is that stim meds create a permanent change that result in BPD.  He cites statistics on the current high rates of juvenile BPD diagnoses, which previously had been very low, and stats that basically ALL those kids (pretty much, like 98%) had previously been on stim meds.  So from his perspective as a scientific journalist, the stim meds are CAUSING the juvenile BPD.

 

So I'm just coming in with all these questions, like are these kids more likely to be on medicaid, are they a population more likely to have developed BPD anyway, is this actually increase in diagnosis rather than just increase in incidence, etc.  Those seem like reasonable questions to me, because when you just take his conclusions and info at face value, without question, you come out pretty freaked out that putting your kid on meds makes them radically more likely to develop vicious BPD, something obviously no one wants for their dc.  

 

In fact, if you have experience with multiple kids who in fact DO have both, when it was (previous to the development of meds) a relatively rare diagnosis at all, that really does speak to what he's talking about.  And I know you don't want to talk about specific people or specific situations.  But that is the sort of scenario he's talking about, where seemingly someone had no prodromal indications at all, takes the meds, and bam begins cycling and develops BPD symptoms.  So then the question is whether this is higher identification of what would have already happened or causative or what.  That's why AM is pulling up studies, and nothing she pulls up supports what this guy is saying, even though I think we can ALL AGREE that an increase in diagnosis of juvenile BPD is concerning, no matter WHAT the cause!

 

I understand what you said the guy is saying--I was just throwing out a slightly different idea--that maybe one is not leading to the other, but treatment of one unmasks the other. It kind of sounds moot anyway. I am pretty sure that with at least one kid, it was truly on the table that this child might have both before anyone talked meds for ADHD, and the meds have been beneficial. That's not the same as taking meds leading to the other. Maybe I'm missing a subtley of what you are saying here. I am trying to offer an instance of something that's the opposite of what he's saying.

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I understand what you said the guy is saying--I was just throwing out a slightly different idea--that maybe one is not leading to the other, but treatment of one unmasks the other. It kind of sounds moot anyway. I am pretty sure that with at least one kid, it was truly on the table that this child might have both before anyone talked meds for ADHD, and the meds have been beneficial. That's not the same as taking meds leading to the other. Maybe I'm missing a subtley of what you are saying here. I am trying to offer an instance of something that's the opposite of what he's saying.

Oh it's definitely an interesting thought process. I think the unmasking thing is an argument I've heard.  His argument is that it's causative.  That doesn't totally make sense, because if that's the case you'd just wait, let things normalize again (which he admitted they do), and the bpd symptoms should stop.  The current research is exploring whether the kids were syndromal, which is a fancy word to say they had some pre-syndrome symptoms, and there's discussion of what those would be.  

 

So yes, nobody likes to think my kid has even more serious challenges and I'll take this med and then it will become obvious it's not enough, sigh.  Nobody is anticipating that.  Everybody wants to beat the odds, lol.

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Well, to add an uninterpretable data point to my daughter, she was being especially impossible behavior-wise today, just completely explosive, so I decided what the heck. Gave her some strong coffee, a bit stronger than I'd tried previously (which had no effect at all), and now she's super-hyper. Trying to have conversations with me while she's wiggling and twisting, won't stop talking. (Don't call Child Protective Services on me...) She usually has some hyper tendencies, but not like this. There's no increase in focus, no calmness like others have seen, but she's happier and her behavior/irritation seems to have improved.

 

I don't know that I can deduce anything from this, but from looking online it seems like caffeine almost universally improves ADHD symptoms. Or maybe it's like stimulants which only work for about 80% of people, and a sign that even if we try them stimulants won't work for her...

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:grouphug: Anna's Mom. I'm sorry  today was hard.

 

I don't think you can assume anything based on her response to the caffeine. For one, you likely don't have equivalent dosing. My son had essentially no response to lower doses of Ritalin. FWIW, his response to too high is sleepiness. Just right is, in his words, "in control of my energy." I asked him how it felt today because I was thinking of this thread.

 

While there don’t appear to be any systematic reviews, there are trials comparing caffeine to other drugs. In one comparison, 20mg of methylphenidate was found to be superior to 160mg of caffeine. In another trial, seventeen children who had positively responded to stimulant drugs were trialed on placebo, or two different doses of caffeine.  Caffeine didn’t have any statistically significant effects on behavioural measures.  In a trial  comparing amphetamines to 600mg caffeine daily, plus amphetamines,  caffeine was reported to provide incremental benefit, but side effects were noted. That’s not surprising: 600mg is the caffeine in two Starbucks Grande-sized coffees.  A double-blind crossover examination of caffeine, methylphenidate, and dextroamphetamine in 29 children concluded that while the two stimulants had meaningful effects, caffeine was indistinguishable from placebo. Overall — no strong signals of efficacy in the evidence.

 

https://www.sciencebasedmedicine.org/caffeine-for-adhd/

Edited by sbgrace
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I have also heard that caffeine is less specific in how it stimulates, whereas things like Ritalin stimulate certain parts of the brain. Caffeine doesn't seem to do a lot to help people I know with ADHD focus--it's more that they are kind of neutral (don't get jittery), or they actually relax (drink it before bed). It's a little alerting sometimes, but it's not like meds. (I know someone who has been on stimulant meds and finds them helpful and also has the "puts me to sleep" reaction to caffeine.)

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Thanks, that's good to know. From everything I'd read previously (including Tiramisu's daughter), people speak in forums of caffeine acting for them as a more gentle substitute for stimulants, calming and focusing. Maybe for some the calming is enough to help with their focus, they don't need to expend energy on keeping their minds still, and maybe there's some placebo effect in there as well.

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FWIW, I came across the following in an article this morning:  http://www.nytimes.com/2016/01/24/opinion/sunday/a-drug-to-cure-fear.html?_r=0

 

ANXIETY enhances emotional memory. We all know that — it’s why you can easily forget where you put your wallet, but will never forget being attacked. This is the case because anxiety leads to the release of norepinephrine in the brain, which, again, strengthens emotional learning. It is also why we should think twice about casually prescribing stimulants like Ritalin and Adderall for young people who really don’t need them. Stimulants also cause the release of norepinephrine and may enhance fear learning. So it is possible that taking stimulants could increase one’s risk of developing PTSD when exposed to trauma.

 
Indeed, a study that will be published next month found that the escalating use of stimulants by the military in active duty soldiers, including those serving in Iraq and Afghanistan, was strongly correlated with an increase in the rates of PTSD, even when controlling for other factors, like the rate of attention deficit hyperactivity disorder. The study examined the use of prescription stimulants, like Ritalin and Adderall, and the rates of PTSD in nearly 26,000 military service members between 2001 and 2008, and found that the incidence of PTSD increased along with the prescriptions.
 
I'm not sure that it can be concluded that stimulants were causative as opposed to simply correlative, but the bit about norepinephrine is interesting.
 
(I really found the article interesting with regard to the possibility of a beta-blocker reducing anxiety.  The action of calcium is extremely complicated and in our case, we know of one clearly elevated marker, CamKII.  Interrupting that chain of reactions wouldn't go as far to the root as I would like but might offer an interesting alternative.)
Edited by wapiti
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FWIW, I came across the following in an article this morning:  http://www.nytimes.com/2016/01/24/opinion/sunday/a-drug-to-cure-fear.html?_r=0

 

 
I'm not sure that it can be concluded that stimulants were causative as opposed to simply correlative, but the bit about norepinephrine is interesting.
 
(I really found the article interesting with regard to the possibility of a beta-blocker reducing anxiety.  The action of calcium is extremely complicated and in our case, we know of one clearly elevated marker, CamKII.  Interrupting that chain of reactions wouldn't go as far to the root as I would like but might offer an interesting alternative.)

 

 

The Coffee Klatch network has a podcast on beta-blockers used this way, I think. It's hard to find their archived podcasts on the internet, but if you subscribe to the podcast, then you can find all the old stuff by scrolling through the list. 

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I was just reading about beta blockers in Temple Grandin's book today. I think I'm reading it at the right time because all of these topics keep coming up.

 

Today dd had a little cola and no coffee, just by chance. She was louder and less focused today. My caffeine experiment needs more work. 

 

My brother says his mood is better with caffeine. Espresso is his med of choice.

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  • 5 weeks later...

:lol:   You know you could go on forever like this, right?  

 

So what's the worst that happens if you try a 4 hour dose of a stimulant?  Seriously.  What could be the possible outcomes?  It's a super short half life.  I'm not sure it ruins them in one dose or anything.  We've already walked down this path and seen the cycling effect seemed to be more with the XR (12 hour, extended release) meds than the 4 hour single dose.  

 

My ds' BMI is so low.  That's what holds me back on it.  To me, I've worked through the other arguments in my mind.

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Anna's BMI is actually on the high side, so a little appetite suppression wouldn't hurt her. IDK, I guess there are a couple of factors, first that we'd need to find a psychiatrist because her neuropsych didn't want to prescribe it (since she's doing well academically), and none of the psychs I've found take insurance. So we're potentially talking thousands of dollars for the initial and followup visits as we try to find the right med and dosage. And there's still the lingering fear of j-bpd, because of her birth mother's uncle and unknown medical history on her birth father's side. And of course my freakout, rational or not, at messing with this precious little girl's brain...

 

LOL about this going on forever. I know, and I'm sure it will! :svengo:

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They're legally allowed to write the scrip and dispense, and it's how the majority of american kids are getting it done.  In fact, I'm guessing the majority of *adults* on meds are just going through their general.  Using a $300 an hour pdoc is not the norm.  

 

I'm sure some peds are better at it (more attentive, better at listening and modifying) than others.  I think it's a huge red flag to go ONLY to a ped and never get the full psych eval to know what's going on and what needs to change and confirm that there aren't more diagnoses.  But just for the meds?  I'm just saying lots of america is going at it this way.  It's not THAT hard.  Nuts, even a psychiatric nurse practitioner can handle meds.  

 

I'm just saying if that's your hill, there are ways to flex it.

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It's true, I know what kids are usually started on, I know the signs of over and under-dosing, I know the signs of it being the wrong med, I know how to tell whether a non-stim might be a better option, or should be added to the stim to address rebound issues.

 

I should really start up my own practice, ha.

 

lucy-the-psychiatrist.gif

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But is a ped really qualified? (With the umpteen million hours of research I've done, I'm pretty sure I know more about meds than a regular ped would.)

My ds sees a psychiatrist but I'm pretty sure we would have followed exactly the same road if he would have have just been prescribed meds by a pediatrician.

He started on an xr Adderall (made him moody and nervous, no Adderall drugs for him).

Went to a long acting Ritalin (worked ok, but I wanted something shorter acting so he could eat a big lunch by about 2:00 and go to sleep by 9:00).

Now he's on a shorter acting generic Ritalin but he takes the very lowest dose and he needs a little more focus but when we increase it, I see moodiness and anxiety.

When we see the psych next month I'm going to ask to try Focalin.

 

 

Anyway, all that was to say that I really think a ped would have probably prescribed all the same meds.

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Now he's on a shorter acting generic Ritalin but he takes the very lowest dose and he needs a little more focus but when we increase it, I see moodiness and anxiety.

When we see the psych next month I'm going to ask to try Focalin.

 

I've read good firsthand accounts of Focalin! I guess it's the enantiomer of Ritalin, and is supposed to work for people who respond favorably to Ritalin, but have fewer side effects. Wishing you luck!

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