I am fully aware you are not my doctor.
August 18, 2014 1:25 PM Subscribe
I have an 8 year old boy and a new prescription for Concerta (for him, not for me). After more than a year of testing and discussion, I've accepted the 'script because - as our doctor was very clear - we can always decide not to fill it. I'm asking you to help us decide if we should try this.
At the risk of going on at length, here's the deal. My son is 8 has has a formal diagnosis of ADHD and ASD (he would have been diagnosed with Aspergers if that was still a recognized diagnosis - his doctors and therapists use the phrase "high functioning" with him a lot (which I hate). I would just say that he's socially unobservant.). He's an awesome, creative, funny, loving kid. He's very atypical in presentation for both ADHD and ASD, but after almost two years of evaluation and testing this is where the diagnosis has settled. I could go on at length about his strengths, but the only one that seems relevant here is that he's very, very intelligent, and could be academically extremely successful if only he were able to focus in the classroom.
In addition to the stuff listed above, he's a pretty anxious child in general, with a particular phobia of bees. (Interestingly, he's afraid of bees because he is afraid the bee will die if it sings him vs. being actually afraid of the pain of being stung by a bee). He has also, for the past six months or so, developed a tic that manifests as extreme blinking, particularly when eating or talking. Lastly, he's not (and never has been) a great sleeper.
So: in theory, we're going to try the Concerta for a couple of days (weekend days) between now and when school starts on the 2nd. After a ton of discussion, his doctors have decided that Concerta is the best "first try" for him despite the known anxiety side effects ("I've also seen it make the tics disappear. There isn't any way to know except to try").
Here are my questions for you, who are not our doctors. I am aware I am asking you for anecdotal stuff, but rest assured that we've discussed this at length with both his regular pede and his pediatric developmental neurologist. I am looking for a perspective they cannot really give.
- Did you give your child Concerta? Did it ramp up his/her anxiety? If it did, how long did the anxiety last after the action period of the drug had passed?
- If your child had other negative side effects to Concerta (tics, in particular) how long did they last? (The literature does describe tics remaining long after the course of medication has passed. Our PDN calls this "very rare" but could not immediately categorize how rare with a percentage or study. The internet seems to say otherwise, but that's confirmation bias I know.) Did they resolve without other medication?
- Did you give your child Concerta and nothing happened but good things? No side effects at all?
- Our PDN no longer prescribes Strattera for children due to the black box warning. If it turns out that stimulants don't work for him, do we have any other options?
And, finally: I feel like I'm making my son into a test rabbit. I can give him this drug, and nobody can say for sure if things will get better for him, if things will get uniformly and seriously worse, or if there will just be side effects that we'll have to learn to live with. I know that, in theory, this is a short-term commitment -- we try it for a day or two and if it's awful then we move on -- but stories about kids who have ended up with long-lasting tics or even lasting psychiatric disorders are too common to completely dismiss. I'm also really surprised that given the prevalence of the use of stimulants, that there isn't a test or profile that says "this should work for these kids, but it probably won't work for those kids".
I am not asking you, Metafilter, to make this decision for me. But I do feel strongly there are level heads here that both have hands on experience and are also up on the latest research and treatments. So, ultimately, my question is: given what I've told you about my specific child, do you feel I should take the risk?
At the risk of going on at length, here's the deal. My son is 8 has has a formal diagnosis of ADHD and ASD (he would have been diagnosed with Aspergers if that was still a recognized diagnosis - his doctors and therapists use the phrase "high functioning" with him a lot (which I hate). I would just say that he's socially unobservant.). He's an awesome, creative, funny, loving kid. He's very atypical in presentation for both ADHD and ASD, but after almost two years of evaluation and testing this is where the diagnosis has settled. I could go on at length about his strengths, but the only one that seems relevant here is that he's very, very intelligent, and could be academically extremely successful if only he were able to focus in the classroom.
In addition to the stuff listed above, he's a pretty anxious child in general, with a particular phobia of bees. (Interestingly, he's afraid of bees because he is afraid the bee will die if it sings him vs. being actually afraid of the pain of being stung by a bee). He has also, for the past six months or so, developed a tic that manifests as extreme blinking, particularly when eating or talking. Lastly, he's not (and never has been) a great sleeper.
So: in theory, we're going to try the Concerta for a couple of days (weekend days) between now and when school starts on the 2nd. After a ton of discussion, his doctors have decided that Concerta is the best "first try" for him despite the known anxiety side effects ("I've also seen it make the tics disappear. There isn't any way to know except to try").
Here are my questions for you, who are not our doctors. I am aware I am asking you for anecdotal stuff, but rest assured that we've discussed this at length with both his regular pede and his pediatric developmental neurologist. I am looking for a perspective they cannot really give.
- Did you give your child Concerta? Did it ramp up his/her anxiety? If it did, how long did the anxiety last after the action period of the drug had passed?
- If your child had other negative side effects to Concerta (tics, in particular) how long did they last? (The literature does describe tics remaining long after the course of medication has passed. Our PDN calls this "very rare" but could not immediately categorize how rare with a percentage or study. The internet seems to say otherwise, but that's confirmation bias I know.) Did they resolve without other medication?
- Did you give your child Concerta and nothing happened but good things? No side effects at all?
- Our PDN no longer prescribes Strattera for children due to the black box warning. If it turns out that stimulants don't work for him, do we have any other options?
And, finally: I feel like I'm making my son into a test rabbit. I can give him this drug, and nobody can say for sure if things will get better for him, if things will get uniformly and seriously worse, or if there will just be side effects that we'll have to learn to live with. I know that, in theory, this is a short-term commitment -- we try it for a day or two and if it's awful then we move on -- but stories about kids who have ended up with long-lasting tics or even lasting psychiatric disorders are too common to completely dismiss. I'm also really surprised that given the prevalence of the use of stimulants, that there isn't a test or profile that says "this should work for these kids, but it probably won't work for those kids".
I am not asking you, Metafilter, to make this decision for me. But I do feel strongly there are level heads here that both have hands on experience and are also up on the latest research and treatments. So, ultimately, my question is: given what I've told you about my specific child, do you feel I should take the risk?
Response by poster: Anecdotal evidence isn't better than your very well-informed doctor's advice
I am aware of that. At the same time, I have the strong feeling that every doctor we speak to (he sees three on a regular basis) underplays the possible risks. Maybe I'm just naturally risk adverse, but I also know that most kids who get ADHD medications have a much less complex set of issues than my child does. He's a statistical outlier, and so it's likely that anecdotal evidence might point us to additional research to do or additional questions to ask.
For example, neither or pede nor the PDN mentioned the thing about tics as a possible lasting side effect. I read about them in anecdotal evidence on internet forums first, then did some research, found the literature and then asked about them. And, while we could get yet another opinion, I'm confident that we have the best PDN in practice north of Boston currently.
posted by anastasiav at 1:49 PM on August 18, 2014
I am aware of that. At the same time, I have the strong feeling that every doctor we speak to (he sees three on a regular basis) underplays the possible risks. Maybe I'm just naturally risk adverse, but I also know that most kids who get ADHD medications have a much less complex set of issues than my child does. He's a statistical outlier, and so it's likely that anecdotal evidence might point us to additional research to do or additional questions to ask.
For example, neither or pede nor the PDN mentioned the thing about tics as a possible lasting side effect. I read about them in anecdotal evidence on internet forums first, then did some research, found the literature and then asked about them. And, while we could get yet another opinion, I'm confident that we have the best PDN in practice north of Boston currently.
posted by anastasiav at 1:49 PM on August 18, 2014
Hi there,
My daughter (11) was on Concerta for about 6 months, and then switched to Metadate. I think we started meds when she was 8. It was a really hard decision for me and one that I still feel pretty extensive ambivalence about.
It's been a while, but my memory of the Concerta was she was not able to go to sleep. Metadate is the same drugs but in different proportions, so the shorter acting proportion is stronger and the longer acting shorter. When we switched, she went to sleep on time and she felt better.
I can't separate whether sleep loss caused her to be more strung out seeming on Concerta, or if it was the Concerta itself, or if it just happened to coincide with a high stress period in her life. For me, I don't regret that we tried it. We tried it, it wasn't great, we switched, and now have been settled for a long time.
If it's any consolation, I can say that many classes of meds actually work the same way - for example, you'd be given one blood pressure med to start, then if that doesn't work well for you, you'd keep switching till you settled on something effective with the fewest side effects.
I know this is a big hard issue and it sounds like our kids have a lot in common in terms of being awesome and smart and socially behind with other complex challenges. We should arrange a play date! In all seriousness, please feel free to get in touch with me to talk more about it. It's been such a complicated and frankly sad process for me, but I have done a lot of thinking about it and my kid is a little older now so I've got a little perspective.
Good luck to you,
posted by latkes at 2:00 PM on August 18, 2014 [2 favorites]
My daughter (11) was on Concerta for about 6 months, and then switched to Metadate. I think we started meds when she was 8. It was a really hard decision for me and one that I still feel pretty extensive ambivalence about.
It's been a while, but my memory of the Concerta was she was not able to go to sleep. Metadate is the same drugs but in different proportions, so the shorter acting proportion is stronger and the longer acting shorter. When we switched, she went to sleep on time and she felt better.
I can't separate whether sleep loss caused her to be more strung out seeming on Concerta, or if it was the Concerta itself, or if it just happened to coincide with a high stress period in her life. For me, I don't regret that we tried it. We tried it, it wasn't great, we switched, and now have been settled for a long time.
If it's any consolation, I can say that many classes of meds actually work the same way - for example, you'd be given one blood pressure med to start, then if that doesn't work well for you, you'd keep switching till you settled on something effective with the fewest side effects.
I know this is a big hard issue and it sounds like our kids have a lot in common in terms of being awesome and smart and socially behind with other complex challenges. We should arrange a play date! In all seriousness, please feel free to get in touch with me to talk more about it. It's been such a complicated and frankly sad process for me, but I have done a lot of thinking about it and my kid is a little older now so I've got a little perspective.
Good luck to you,
posted by latkes at 2:00 PM on August 18, 2014 [2 favorites]
My daughter takes Focalin XR (among other things) and not Concerta, but both are methylphenidate-class stimulants with a similar mechanism of action. She also has moderate anxiety and there was no increase in her anxiety symptoms after she started taking Focalin. She told me a couple days after she started taking it, "wow, I can sit down and read a book and actually understand it" and I was kind of kicking myself for leaving the ADHD symptoms unaddressed for so long while we had been on her mood disorder symptoms. No tics.
If stimulants don't work and your PDoc won't prescribe Strattera, bupropion is an option. My daughter takes that as well, more for depression than ADHD and it didn't really do much for her ADHD symptoms (but it also doesn't make her more anxious). There are a couple of non-stimulant medications recently approved by the USFDA for treatment of ADHD in pediatric patients--guanfacine (Intuniv) and clonidine (Kapvay, not to be confused with clonapin) that are also sometimes used to treat anxiety and tic disorders.
posted by SomeTrickPony at 2:07 PM on August 18, 2014 [2 favorites]
If stimulants don't work and your PDoc won't prescribe Strattera, bupropion is an option. My daughter takes that as well, more for depression than ADHD and it didn't really do much for her ADHD symptoms (but it also doesn't make her more anxious). There are a couple of non-stimulant medications recently approved by the USFDA for treatment of ADHD in pediatric patients--guanfacine (Intuniv) and clonidine (Kapvay, not to be confused with clonapin) that are also sometimes used to treat anxiety and tic disorders.
posted by SomeTrickPony at 2:07 PM on August 18, 2014 [2 favorites]
Regarding your comment "I feel like I've been making my child a test rabbit" -- I can relate, having seen very dear friends and relatives struggle with the decision for their children (one with ADHD and another with autism + complications). It actually took a bit of time with both to find the right treatment, but it made an immense difference. However, once the testing resulted in a good match, the improvement in their childrens' lives has been very positive.
As one who struggles daily with ADHD, I sure wish I could have been a test rabbit as a child. (I was undiagnosed until adulthood). The medical treatment (Concerta) has enabled me to have the concentration necessary to learn better workplace skills and life habits.
posted by apennington at 2:20 PM on August 18, 2014 [5 favorites]
As one who struggles daily with ADHD, I sure wish I could have been a test rabbit as a child. (I was undiagnosed until adulthood). The medical treatment (Concerta) has enabled me to have the concentration necessary to learn better workplace skills and life habits.
posted by apennington at 2:20 PM on August 18, 2014 [5 favorites]
- Did you give your child Concerta and nothing happened but good things? No side effects at all?
Yes. Maybe not no side effects (some difficulty falling asleep which we largely remedied by having her take it earlier -- as soon as she wakes up in our case, and some loss of appetite, but that really seems to come and go as she heads into teenager-hood) and while the benefits are not exactly night and day, my daughter definitely prefers taking it to not taking it. We tend to not have her take it on the weekends, which I think helps her feel like she is not at the mercy of chemistry.
posted by Rock Steady at 2:32 PM on August 18, 2014 [1 favorite]
Yes. Maybe not no side effects (some difficulty falling asleep which we largely remedied by having her take it earlier -- as soon as she wakes up in our case, and some loss of appetite, but that really seems to come and go as she heads into teenager-hood) and while the benefits are not exactly night and day, my daughter definitely prefers taking it to not taking it. We tend to not have her take it on the weekends, which I think helps her feel like she is not at the mercy of chemistry.
posted by Rock Steady at 2:32 PM on August 18, 2014 [1 favorite]
I was diagnosed with severe ADD in high school and have struggled for the last 25 years. I can tell you that I did NOT like being medicated in high school because it made me "feel different". Since then, I have tried 3-4 other drugs (including Concerta) until finally figuring out what works for me (Adderall, FWIW, and at a dosage that could knock down a horse). I can tell you that while there are side effects (GOD, I can't sleep on this stuff), they FAR outweigh any of the negatives. I'm successful in my chosen career, have a great job, and successfully defended my PhD less than a year ago...and I am VERY, VERY, sure that none of that would have been possible without my ADD meds. I actually had to cancel a very important meeting last month (well worth it!) because my prescription was out and I had an emergency appt. with my doctor for a refill). If you want to know the truth, my wife can also tell when I haven't taken the damned stuff, so I'd probably also be divorced. It is definitely a process to get exactly the right med (and the right dose), but I can personally affirm that it's well-worth the effort. Feel free to shoot me an e-mail if you want to discuss...I'd be happy to answer any questions.
posted by richmondparker at 2:35 PM on August 18, 2014 [1 favorite]
posted by richmondparker at 2:35 PM on August 18, 2014 [1 favorite]
One of my kids has ADHD as well as some anxiety issues. I had the same level of stress about medicating him.
All I can tell you is the difference being on the Concerta is night and day. Before the meds, he blurted in class, he jumped out of his seat, he yelled things. He earned straight D's.
He went on the meds and on the very first day, the change was noticeable by all of his teachers. He was still chatty, but wasn't blurting out every little thought that came into his head. His handwriting went from barely legible scribbling to awful but readable writing.
He was able to focus, to read books, to write papers (he's in high school), to do research.
Within weeks of being on Concerta, his grades went up to A's and maybe one B, and this kid is no genius.
His anxiety is actually lowered now because he can do school and not feel like he's continually pissing off his teachers.
The first few days on it, he got pretty awful headaches toward the end of the day, but megadoses of water help him.
I can't speak to the scary long-term effects but we never experienced anything.
posted by kinetic at 2:40 PM on August 18, 2014 [2 favorites]
All I can tell you is the difference being on the Concerta is night and day. Before the meds, he blurted in class, he jumped out of his seat, he yelled things. He earned straight D's.
He went on the meds and on the very first day, the change was noticeable by all of his teachers. He was still chatty, but wasn't blurting out every little thought that came into his head. His handwriting went from barely legible scribbling to awful but readable writing.
He was able to focus, to read books, to write papers (he's in high school), to do research.
Within weeks of being on Concerta, his grades went up to A's and maybe one B, and this kid is no genius.
His anxiety is actually lowered now because he can do school and not feel like he's continually pissing off his teachers.
The first few days on it, he got pretty awful headaches toward the end of the day, but megadoses of water help him.
I can't speak to the scary long-term effects but we never experienced anything.
posted by kinetic at 2:40 PM on August 18, 2014 [2 favorites]
My child was diagnosed with Aspergers Syndrome, and we went through much the same period of questioning that you did. We actively resisted drugs in general for a long time, but it eventually became apparent that we needed something more to help him in the classroom (same issues of highly intelligent but unable to focus). He was not diagnosed as ADD or ADHD. He was diagnosed with anxiety problems co-morbid with the high functioning autism (not quite OCD levels, but behaviors and tics similar to what you've described).
He has been on concerta for about the past five years.
It took him about two weeks to really adjust to having concerta in his system. It's a short-lived medicine that processes out of his body on a very predictable schedule. He was having the most trouble in afternoon classes, so we worked with the doctor to find a version of the concerta that was extended release so as to be peaking in his bloodstream at the right time of day.
We also started it on a weekend to have at least a couple of days before having it in his system during school. During those first two weeks, he had several episodes of high anxiety (he was quite freaked out), but did not have any trouble with sleeping. The anxiety episodes were strong enough that his Mom was quite ready to give up on the drug entirely, but we'd committed to giving it a 2-week trial, we talked to the doctor about the episodes, and we ultimately stuck with it. Which turned out to be good for us.
After the two-week period, he did not again have any episodes of anxiety like those first few, and I honestly don't believe that there's been any more that should be attributed to Concerta. He did not develop any tics associated with it, and some of the tics he did have before hand went away.
The main thing that I would highlight that we learned when going on to it is that the timing of when they take it, and how long it will stay in their system, and when it will be at its maximal effect is most important. Because it's so short lived, when it's working out of his system... it's just gone.
With it in his system it solved his focus problems. He went from being completely unable to focus in class in the afternoons to being quite functional, and his grades improved, and his teachers reported back favorably.
It may be worth noting that during this whole time, he didn't believe the drug had any effect on him. He did not attribute those initial anxiety attacks to his medicine, and he did not attribute his improvement at school to the medicine... to the point of arguing with us about it. We even did "experiments" where he would take it for a week, and then not for a week, and compare notes... and even though there was a huge difference he remained convinced that the medicine had nothing to do with it. So getting him to take his meds on schedule became a bit of a "thing" for a while, until he accepted it into his morning routine.
I studied this drug and its side effects and people's experiences with it for a long time before we finally "gave in" and tried it. Our results are common, but by no means universal. Some people really do not tolerate this drug well... from what I've read (and the doctor's own experiences) I'd say you've got about a 60 - 70% (ish) shot that it'll be the right drug out of the gate. They have several alternatives if this one isn't tolerated well.
tl/dr: If you try it, give it at least a couple of weeks for your child's system to adjust to it, and expect that there *will* be a period of getting accustomed to the drugs. Once y'all have acclimated, then make your decision about whether it's worth sticking with it. Obviously, stay in communication with your doctor, and bring any concerns to them first!
posted by Lafe at 2:55 PM on August 18, 2014 [3 favorites]
He has been on concerta for about the past five years.
It took him about two weeks to really adjust to having concerta in his system. It's a short-lived medicine that processes out of his body on a very predictable schedule. He was having the most trouble in afternoon classes, so we worked with the doctor to find a version of the concerta that was extended release so as to be peaking in his bloodstream at the right time of day.
We also started it on a weekend to have at least a couple of days before having it in his system during school. During those first two weeks, he had several episodes of high anxiety (he was quite freaked out), but did not have any trouble with sleeping. The anxiety episodes were strong enough that his Mom was quite ready to give up on the drug entirely, but we'd committed to giving it a 2-week trial, we talked to the doctor about the episodes, and we ultimately stuck with it. Which turned out to be good for us.
After the two-week period, he did not again have any episodes of anxiety like those first few, and I honestly don't believe that there's been any more that should be attributed to Concerta. He did not develop any tics associated with it, and some of the tics he did have before hand went away.
The main thing that I would highlight that we learned when going on to it is that the timing of when they take it, and how long it will stay in their system, and when it will be at its maximal effect is most important. Because it's so short lived, when it's working out of his system... it's just gone.
With it in his system it solved his focus problems. He went from being completely unable to focus in class in the afternoons to being quite functional, and his grades improved, and his teachers reported back favorably.
It may be worth noting that during this whole time, he didn't believe the drug had any effect on him. He did not attribute those initial anxiety attacks to his medicine, and he did not attribute his improvement at school to the medicine... to the point of arguing with us about it. We even did "experiments" where he would take it for a week, and then not for a week, and compare notes... and even though there was a huge difference he remained convinced that the medicine had nothing to do with it. So getting him to take his meds on schedule became a bit of a "thing" for a while, until he accepted it into his morning routine.
I studied this drug and its side effects and people's experiences with it for a long time before we finally "gave in" and tried it. Our results are common, but by no means universal. Some people really do not tolerate this drug well... from what I've read (and the doctor's own experiences) I'd say you've got about a 60 - 70% (ish) shot that it'll be the right drug out of the gate. They have several alternatives if this one isn't tolerated well.
tl/dr: If you try it, give it at least a couple of weeks for your child's system to adjust to it, and expect that there *will* be a period of getting accustomed to the drugs. Once y'all have acclimated, then make your decision about whether it's worth sticking with it. Obviously, stay in communication with your doctor, and bring any concerns to them first!
posted by Lafe at 2:55 PM on August 18, 2014 [3 favorites]
I agree with apennington. I wish someone would have diagnosed me as having ADHD as a child so I could have succeeded in school. My only concern would be the possibility of tolerance if he ends up having to take it through adulthood. I managed fine until about 7th grade, but then I think having multiple classes in multiple rooms exceeded my organizational ability and capacity for concentration.
posted by elsietheeel at 2:59 PM on August 18, 2014 [1 favorite]
posted by elsietheeel at 2:59 PM on August 18, 2014 [1 favorite]
At the same time, I have the strong feeling that every doctor we speak to (he sees three on a regular basis) underplays the possible risks
What risks, exactly ? There are no known long term effects from the medication, and really, if it doesn't work, or side effects suck, there is no problem switching to a different dose or formulation or choosing other therapies. You are only really risking time and effort.
My son was on concerta since age 7 or so. It worked well for him, but, the unanswerable question is if something else would have worked better. Once we got the dosage figured out, he did well enough that I stopped looking for other solutions. So...
But, yeah, it made his anxieties worse. Or, more accurately - he was better able realize he felt anxious and so acted on that instead of the "sideways" behaviors we would see when he was unmedicated.
It also supressed his appetite, so we had to structure meals around times he was inclined to eat (Breakfast and dinner primarily) and push snacks at school, since he would never eat a complete lunch.
But as I say, the upside is that I had a son with lots of social issues that was able to have the school experience I never could. He was popular and well liked and did well enough in his studies, too. Not having to medicate would have been ideal, but it would have been far more challenging without the medication.
posted by Pogo_Fuzzybutt at 3:30 PM on August 18, 2014
What risks, exactly ? There are no known long term effects from the medication, and really, if it doesn't work, or side effects suck, there is no problem switching to a different dose or formulation or choosing other therapies. You are only really risking time and effort.
My son was on concerta since age 7 or so. It worked well for him, but, the unanswerable question is if something else would have worked better. Once we got the dosage figured out, he did well enough that I stopped looking for other solutions. So...
But, yeah, it made his anxieties worse. Or, more accurately - he was better able realize he felt anxious and so acted on that instead of the "sideways" behaviors we would see when he was unmedicated.
It also supressed his appetite, so we had to structure meals around times he was inclined to eat (Breakfast and dinner primarily) and push snacks at school, since he would never eat a complete lunch.
But as I say, the upside is that I had a son with lots of social issues that was able to have the school experience I never could. He was popular and well liked and did well enough in his studies, too. Not having to medicate would have been ideal, but it would have been far more challenging without the medication.
posted by Pogo_Fuzzybutt at 3:30 PM on August 18, 2014
Response by poster: What risks, exactly ? There are no known long term effects from the medication, and really, if it doesn't work, or side effects suck, there is no problem switching to a different dose or formulation or choosing other therapies. You are only really risking time and effort.
Well, I mentioned tics and OCD type behaviors, which are document as lasting, in some cases, months and months past the end of the medication. In some kids, anxiety can ramp up high enough to be classify as psychosis, or lead to self harming behaviors, and nobody can say how much more common these are in atypical presentations of ADHD or in kids who have a co-diagnosis with ASD, although there are multiple sources that cite - mainly anecdotally, even in medical literature - that stimulants may work somewhat differently in kids with ASD than they do in kids with "pure" ADHD. We personally know a family whose pre-teen son became extremely aggressive, to the point of being frightening and dangerous, while on stimulant meds.
posted by anastasiav at 4:03 PM on August 18, 2014
Well, I mentioned tics and OCD type behaviors, which are document as lasting, in some cases, months and months past the end of the medication. In some kids, anxiety can ramp up high enough to be classify as psychosis, or lead to self harming behaviors, and nobody can say how much more common these are in atypical presentations of ADHD or in kids who have a co-diagnosis with ASD, although there are multiple sources that cite - mainly anecdotally, even in medical literature - that stimulants may work somewhat differently in kids with ASD than they do in kids with "pure" ADHD. We personally know a family whose pre-teen son became extremely aggressive, to the point of being frightening and dangerous, while on stimulant meds.
posted by anastasiav at 4:03 PM on August 18, 2014
Agree with everyone.
This: "His anxiety is actually lowered now because he can do school and not feel like he's continually pissing off his teachers."
Yes, do not underestimate how ADHD itself can make a child anxious.
My son has been on these stimulant meds for about 8 to 9 years, most of the time. He's 21 now. There are no permanent side effects, but I can't say I'm crazy about his taking them for so long. However, he's entering his senior year in college in a couple of weeks. He is very anxious but who knows how anxious he'd be without the drugs? (he was certainly anxious before he started taking them). And he is also not a "typical" ADHD person.
I agree with the people who told you to try the medication for longer than a weekend. I think you do need to get used to the feelings you have while on the drugs.
But I definitely empathize with your concerns/ambivalence. However your son is not a test rabbit. Many many rabbits have already been tested with these drugs. The reactions are already known. For most people (as you can read in the responses here) it's worth it.
posted by DMelanogaster at 4:05 PM on August 18, 2014 [2 favorites]
This: "His anxiety is actually lowered now because he can do school and not feel like he's continually pissing off his teachers."
Yes, do not underestimate how ADHD itself can make a child anxious.
My son has been on these stimulant meds for about 8 to 9 years, most of the time. He's 21 now. There are no permanent side effects, but I can't say I'm crazy about his taking them for so long. However, he's entering his senior year in college in a couple of weeks. He is very anxious but who knows how anxious he'd be without the drugs? (he was certainly anxious before he started taking them). And he is also not a "typical" ADHD person.
I agree with the people who told you to try the medication for longer than a weekend. I think you do need to get used to the feelings you have while on the drugs.
But I definitely empathize with your concerns/ambivalence. However your son is not a test rabbit. Many many rabbits have already been tested with these drugs. The reactions are already known. For most people (as you can read in the responses here) it's worth it.
posted by DMelanogaster at 4:05 PM on August 18, 2014 [2 favorites]
I don't have a kid but I do have adult ADD. I was an anxious, intelligent kid also. I began treatment for depression and anxiety in my 20s. A couple of years ago, a doc finally started asking me about my attention and executive functioning. Lo and behold, I have really significant ADD and probably had ADHD as a kid. Psycho-stimulant medications changed my life. I don't actually have the anxiety disorder and all my depression symptoms have gone away. I was worried about what the meds would do to my anxiety also. Imagine my surprise when suddenly I found myself forgetting to worry and panic all the time. God bless psycho-stimulants. Concerta, Ritalin, Adderal, etc are all psycho-stimulants and they all have anxiety listed as a side effect. In my experience, Ritalin, eliminated my anxiety.
posted by dchrssyr at 4:10 PM on August 18, 2014
posted by dchrssyr at 4:10 PM on August 18, 2014
I have a young friend, whom I have known since he was about 18 months old, who takes Concerta. He has ADHD and ASD (high functioning) as well. Very, very bright. It took his parents a long time to come to the diagnosis, and then to accept the diagnosis, and then to realize behavioral and environmental modifications weren't working and he needed medication. They went into it with a lot of mixed feelings. But it was like NIGHT AND DAY. His fun, smart, silly personality was so often buried under the ADHD behaviors; on the medicine, he could be much more "himself" without other things getting in the way. Through elementary school he had "weekends off" but when he started junior high last year, he said, "Mom, I want to take it every day, I like how I feel so much better on it, I don't like losing my weekends."
His anxiety went considerably down because he had a lot of trouble communicating (difficulty concentrating his thoughts, but also a lot of physical stammering and stuttering because he was trying to say too many ideas at once). His communication difficulties mostly went away and he could make himself easily understood, which removed like 90% of the anxiety from his life.
Side effects-wise, he is a skinny kid with a high metabolism to start with and Concerta makes him not very hungry, so he has trouble eating enough calories. He was smart enough to understand the idea of "side effect" and that he needed to eat a certain amount even if he wasn't hungry ... although not always compliant enough to keep eating when he was smaller. Part of his deal now is that if he's allowed to take it every day, he has to drink a meal shake every day, which he is good about.
Totally understand your anxiety and it's not the right solution for every child, but it was lifechangeing for my young friend AND his parents. Everyone's frustration and anxiety just went way, way down and family life became a lot happier.
posted by Eyebrows McGee at 4:38 PM on August 18, 2014 [2 favorites]
His anxiety went considerably down because he had a lot of trouble communicating (difficulty concentrating his thoughts, but also a lot of physical stammering and stuttering because he was trying to say too many ideas at once). His communication difficulties mostly went away and he could make himself easily understood, which removed like 90% of the anxiety from his life.
Side effects-wise, he is a skinny kid with a high metabolism to start with and Concerta makes him not very hungry, so he has trouble eating enough calories. He was smart enough to understand the idea of "side effect" and that he needed to eat a certain amount even if he wasn't hungry ... although not always compliant enough to keep eating when he was smaller. Part of his deal now is that if he's allowed to take it every day, he has to drink a meal shake every day, which he is good about.
Totally understand your anxiety and it's not the right solution for every child, but it was lifechangeing for my young friend AND his parents. Everyone's frustration and anxiety just went way, way down and family life became a lot happier.
posted by Eyebrows McGee at 4:38 PM on August 18, 2014 [2 favorites]
Not ADD, but I've been on a lot of psychiatric meds and dealt with some extreme side effects.
Your doctor is not going to memorize the probability of very rare side effects of drugs and you're holding him/her to a really unreasonable standard there (look at the information sheets that come with almost any prescription drug and see how many unlikely side effects are listed). To me, this looks like you're grasping at straws to doubt your child's doctor.
I'm also really surprised that given the prevalence of the use of stimulants, that there isn't a test or profile that says "this should work for these kids, but it probably won't work for those kids".
This sucks, but is normal for psychiatric meds. Genetic tests do exist, but because of their unreliability and the limited information they provide it wouldn't make sense to follow the recommendations of one before trying out all of the most common drugs. It took three years of trying different medications, my doctor recommended one as a last ditch effort that she had little confidence in (and I decided against it because of how unreliable they are).
posted by likethenight at 4:53 PM on August 18, 2014 [1 favorite]
Your doctor is not going to memorize the probability of very rare side effects of drugs and you're holding him/her to a really unreasonable standard there (look at the information sheets that come with almost any prescription drug and see how many unlikely side effects are listed). To me, this looks like you're grasping at straws to doubt your child's doctor.
I'm also really surprised that given the prevalence of the use of stimulants, that there isn't a test or profile that says "this should work for these kids, but it probably won't work for those kids".
This sucks, but is normal for psychiatric meds. Genetic tests do exist, but because of their unreliability and the limited information they provide it wouldn't make sense to follow the recommendations of one before trying out all of the most common drugs. It took three years of trying different medications, my doctor recommended one as a last ditch effort that she had little confidence in (and I decided against it because of how unreliable they are).
posted by likethenight at 4:53 PM on August 18, 2014 [1 favorite]
Best answer: I know you asked for anecdotes, but you also noted in your text that you had asked your doctor about literature on this subject. I was curious so I did a PubMed search.
Have you seen this article?
"Analysis of tic episodes per patient in this study found no correlation between an OROS MPH [Concerta] dose and the frequency of tic episodes..
CONCLUSIONS:
These data suggest that MPH-based therapy does not significantly induce or exacerbate tics in children with ADHD."
That's a review of 5 other good quality studies (i.e. placebo controlled or head to head trials), and because it is pooling data from multiple studies, there's a big sample (over 1000 children).
Tics that emerge while taking Concerta which may persist might not be related to taking Concerta but to the underlying diagnoses the children have, but their parents see it as something the Concerta 'caused' - due to timing. I hope that's reassuring! - and makes you feel less like your child is a test rabbit.
posted by treehorn+bunny at 4:54 PM on August 18, 2014 [2 favorites]
Have you seen this article?
"Analysis of tic episodes per patient in this study found no correlation between an OROS MPH [Concerta] dose and the frequency of tic episodes..
CONCLUSIONS:
These data suggest that MPH-based therapy does not significantly induce or exacerbate tics in children with ADHD."
That's a review of 5 other good quality studies (i.e. placebo controlled or head to head trials), and because it is pooling data from multiple studies, there's a big sample (over 1000 children).
Tics that emerge while taking Concerta which may persist might not be related to taking Concerta but to the underlying diagnoses the children have, but their parents see it as something the Concerta 'caused' - due to timing. I hope that's reassuring! - and makes you feel less like your child is a test rabbit.
posted by treehorn+bunny at 4:54 PM on August 18, 2014 [2 favorites]
My 10-y-o daughter was diagnosed at age 8 with ADHD-PI, but I saw it in her for years before. I struggled with the medication choice, but it is SUCH a difference when she's on. (She forgets on the occasional weekend day to take it.)
She is on the generic of Concerta, and it works so well.
posted by heathrowga at 5:12 PM on August 18, 2014 [1 favorite]
She is on the generic of Concerta, and it works so well.
posted by heathrowga at 5:12 PM on August 18, 2014 [1 favorite]
I will suggest that you find some online support groups for parents of gifted kids and start reading the literature available online and the kinds of books that get suggested in such discussion groups. Your kid does not sound that strange for a gifted kid and when you get a whole bunch of bright parents together who have kids with similar issues: a) you start learning other ways to cope with these types of issues -- some people never go the drug route (my kids were never medicated for these types of issues and it was suggested at one time) and b) if you do decide to go the drug route, you will do so much more confident that all other options have genuinely been ruled out and this is, in fact, the least worst answer available for this child at this time, which at least makes you feel a whole lot more okay about it.
Also, you will find people who went to Harvard and what not struggling with similar questions and different very smart people coming to completely different conclusions for similar issues because of various factors.
Best of luck.
posted by Michele in California at 5:20 PM on August 18, 2014
Also, you will find people who went to Harvard and what not struggling with similar questions and different very smart people coming to completely different conclusions for similar issues because of various factors.
Best of luck.
posted by Michele in California at 5:20 PM on August 18, 2014
My brother just began taking Adderall as an adult. He reports that on it, his anxiety dropped way off, and so has his insomnia. Now, he's an adult, and it's a different drug, and he's not on the spectrum -- but since those were two of the symptoms you mentioned, I thought I'd chime in.
posted by KathrynT at 5:23 PM on August 18, 2014
posted by KathrynT at 5:23 PM on August 18, 2014
My boys both took Concerta for years, 72 milligrams a day, and liked it fine. It was always up to them whether they wanted to continue it, but they had so much trouble in school without it that they were glad to have it. When a friend about to try medication called to ask one of them how medication felt, he said, "Normal". No side effects for years, no anxiety or anything, except for a real lack of appetite on medication days, made up for by eating a lot on the weekends and during holidays.
Concerta has a nice gradual wearing-off period, at the end of the day. It solved the problem one of my boys had of getting irritable and easily bullied when the non-time-release form of Adderall, which was what he'd been taking before, wore off abruptly.
Eventually at age seventeen one of my sons developed a sort of depression, felt "too tired" to do his homework, and had to switch medications to another one. My other son at age seventeen decided he no longer liked the way it felt, and he was much more able to deal without it by then, though his grades took a noticeable hit. When he was much younger, he was not able to make progress in speech therapy without the medication, and found it extremely helpful in benefiting from the therapy, because his ADD meant he wasn't paying enough attention to get much out of the lessons until then.
One of the reasons I was amenable to trying medication was that, at the time, it was thought to make a big difference in how susceptible teens were to misusing drugs illegally. Mine certainly have the attitude that the medication is a tool, not a fun thing. Whether or not it made them less likely to misuse drugs, it certainly didn't have the opposite effect of making them inclined to do so, as some people claim it will.
posted by artistic verisimilitude at 6:01 PM on August 18, 2014 [2 favorites]
Concerta has a nice gradual wearing-off period, at the end of the day. It solved the problem one of my boys had of getting irritable and easily bullied when the non-time-release form of Adderall, which was what he'd been taking before, wore off abruptly.
Eventually at age seventeen one of my sons developed a sort of depression, felt "too tired" to do his homework, and had to switch medications to another one. My other son at age seventeen decided he no longer liked the way it felt, and he was much more able to deal without it by then, though his grades took a noticeable hit. When he was much younger, he was not able to make progress in speech therapy without the medication, and found it extremely helpful in benefiting from the therapy, because his ADD meant he wasn't paying enough attention to get much out of the lessons until then.
One of the reasons I was amenable to trying medication was that, at the time, it was thought to make a big difference in how susceptible teens were to misusing drugs illegally. Mine certainly have the attitude that the medication is a tool, not a fun thing. Whether or not it made them less likely to misuse drugs, it certainly didn't have the opposite effect of making them inclined to do so, as some people claim it will.
posted by artistic verisimilitude at 6:01 PM on August 18, 2014 [2 favorites]
For reasons I won't go into, I was not diagnosed with and did not start treatment for AD[H]D until I was an adult. At the time of diagnosis, I started on a drug that is identical to Concerta except for its duration of effect, and it made a night and day difference.
A couple years after, when I really did need to be in peak thinking condition for 12+ hours a day, I switched to Concerta itself and it worked well. Now that I only need to be in that condition for 8 or so hours a day, I have switched back to a shorter acting form of the same drug and it still works well.
I have been using the same drug for ADHD at the same dose for over ten years now and it works extremely well. I do not experience any negative side effects, and I have never felt any need or urge to increase the dosage of the drug.
I too suffer from an anxiety disorder but for some reason, Concerta and its related medications do not seem to increase my anxiety at all. In fact, if anything, they seem to decrease it in most situations. I do not really have an explanation for this.
To conclude, I recommend having your kid try it, while paying close attention to both your perceptions of him/her and also his or her own reports as to how he/she feels when taking the drug.
In retrospect, no-one suspected that I had ADD/ADHD when I was a kid, but I almost certainly did, and I would *very* likely have benefited from being treated for it.
posted by Juffo-Wup at 6:24 PM on August 18, 2014
A couple years after, when I really did need to be in peak thinking condition for 12+ hours a day, I switched to Concerta itself and it worked well. Now that I only need to be in that condition for 8 or so hours a day, I have switched back to a shorter acting form of the same drug and it still works well.
I have been using the same drug for ADHD at the same dose for over ten years now and it works extremely well. I do not experience any negative side effects, and I have never felt any need or urge to increase the dosage of the drug.
I too suffer from an anxiety disorder but for some reason, Concerta and its related medications do not seem to increase my anxiety at all. In fact, if anything, they seem to decrease it in most situations. I do not really have an explanation for this.
To conclude, I recommend having your kid try it, while paying close attention to both your perceptions of him/her and also his or her own reports as to how he/she feels when taking the drug.
In retrospect, no-one suspected that I had ADD/ADHD when I was a kid, but I almost certainly did, and I would *very* likely have benefited from being treated for it.
posted by Juffo-Wup at 6:24 PM on August 18, 2014
Oh, one more thing, regarding the tics: I used to have some kind of tic that apparently involved me raising my eyebrows and/or blinking my eyes in an unusual or unusually frequent way. I wasn't very actively aware that this was going on but other people told me that it was. I never asked a doctor about it; I probably would have if it had gone on further into my adulthood.
As an adult, it doesn't seem to happen anymore. I don't know why or exactly when it stopped, although I would guess it was sometime around the age of 25.
posted by Juffo-Wup at 6:28 PM on August 18, 2014
As an adult, it doesn't seem to happen anymore. I don't know why or exactly when it stopped, although I would guess it was sometime around the age of 25.
posted by Juffo-Wup at 6:28 PM on August 18, 2014
I was a bit like your son when I was his age, except for the difficulty sleeping and the high intelligence; my partner may be very interested to hear of another rapid blinker, which she's noted in me a number of times, though for me it's associated not with food, but occurs when I'm about to lose my temper, and I experience it as a last ditch effort to stay in control. I had other tics as well, including a compulsive desire to throw things and kick things, and I spent uncounted hours jumping up and down staircases wherever I could find them.
I also had a kind of hyper-empathy with animals, insects too, and the most violent incident of my pretty rugged childhood took place when I was 5 and the 7 year old next door neighbor boy deliberately killed my permanently pink pet chameleon when I was away from the house one day.
The one time I took cocaine (a Concerta analogue as I understand it), as an adult in my late 20s, I developed a tic in which I jerked my head to the side involuntarily, and violently enough to make my neck very sore the next day, but the tic was gone by then too.
I was never medicated, and had less than zero success in school until the 3rd grade when I finally learned to read.
I am very glad I wasn't, though I think I would have had a much less rocky time in school, because I think that's what these drugs do: they make things better immediately, almost miraculously, but at far too great a cost in the long run.
Recently, they've been associated with adult obesity, and when I looked around for more information, I found an article written for Scientific American Mind by Edmund S. Higgins (Clinical Assistant Professor of Family Medicine and Psychiatry at the Medical University of South Carolina in Charleston), and published in July 2009, which made them look a lot worse than I'd expected:
I suggest you take a look at it.
posted by jamjam at 6:58 PM on August 18, 2014 [1 favorite]
I also had a kind of hyper-empathy with animals, insects too, and the most violent incident of my pretty rugged childhood took place when I was 5 and the 7 year old next door neighbor boy deliberately killed my permanently pink pet chameleon when I was away from the house one day.
The one time I took cocaine (a Concerta analogue as I understand it), as an adult in my late 20s, I developed a tic in which I jerked my head to the side involuntarily, and violently enough to make my neck very sore the next day, but the tic was gone by then too.
I was never medicated, and had less than zero success in school until the 3rd grade when I finally learned to read.
I am very glad I wasn't, though I think I would have had a much less rocky time in school, because I think that's what these drugs do: they make things better immediately, almost miraculously, but at far too great a cost in the long run.
Recently, they've been associated with adult obesity, and when I looked around for more information, I found an article written for Scientific American Mind by Edmund S. Higgins (Clinical Assistant Professor of Family Medicine and Psychiatry at the Medical University of South Carolina in Charleston), and published in July 2009, which made them look a lot worse than I'd expected:
Do ADHD Drugs Take a Toll on the Brain?Though not as well documented as stunted growth, the other possible problems raised by the article are even more severe.
...
So far the best-documented problem associated with the stimulants used to treat attention-deficit hyperactivity disorder (ADHD) concerns growth. Human growth is controlled at least in part through the hypothalamus and pituitary at the base of the brain. Studies in mice hint that stimulants may increase levels of the neurotransmitter dopamine in the hypothalamus as well as in the striatum (a three-part brain structure that includes part of its reward circuitry) and that the excess dopamine may reach the pituitary by way of the bloodstream and act to retard growth.
Recent work strongly indicates that the drugs can stunt growth in children. In a 2007 analysis of a National Institute of Mental Health study of ADHD treatments involving 579 children, research psychiatrist Nora Volkow, who directs the National Institute of Drug Abuse, and her colleagues compared growth rates of unmedicated seven- to 10-year-olds over three years with those of kids who took stimulants throughout that period. Relative to the unmedicated youths, the drug-treated youths showed a decrease in growth rate, gaining, on average, two fewer centimeters in height and 2.7 kilograms less in weight. Although this growth-stunting effect came to a halt by the third year, the kids on the meds never caught up to their counterparts.
I suggest you take a look at it.
posted by jamjam at 6:58 PM on August 18, 2014 [1 favorite]
We personally know a family whose pre-teen son became extremely aggressive, to the point of being frightening and dangerous, while on stimulant meds.
I'm not a psychiatrist or a doctor. I've worked with hundreds of teenagers who have been put on stimulants, so I can address this from the educator perspective.
You're right. There are kids who develop tics, who become paranoid, and who become aggressive.
But with developing brains one can't always accurately directly blame the drug for the response because kids' brains are changing.
Think of the autism/vaccine analogy. Kids often develop signs of autism right around the time they get some vaccines, and for years it seemed there was a causality between the two. But vaccines don't cause autism; unfortunately, the timing of autism's early signs coincide with the same time kids get vaccines.
What I'm saying is that yes, some kids may develop tics and other things, but those things were probably going to happen anyway and they're not a direct result of the stimulants, most of the time.
In my professional experience, I've seen only one kid, a teenage boy, become hostile and aggressive when on Concerta. There were no other changes in his behavior.
And I would stake my professional reputation on the kid didn't have ADD and when you give a stimulant to someone who doesn't need it, it can whack out their brain while they're on the medication.
Ultimately, this is a terribly difficult decision, and what I would do is have my son try the meds and observe him. Is he quieter? Less rambunctious? Does he seem calmer? How does he feel?
If he sees ramped up or says he feels speedy or otherwise awful, I would take him off the Concerta.
I think you safely experiment with dosing him for up to a week. You'll know if the drug works by then.
posted by kinetic at 3:32 AM on August 19, 2014 [4 favorites]
I'm not a psychiatrist or a doctor. I've worked with hundreds of teenagers who have been put on stimulants, so I can address this from the educator perspective.
You're right. There are kids who develop tics, who become paranoid, and who become aggressive.
But with developing brains one can't always accurately directly blame the drug for the response because kids' brains are changing.
Think of the autism/vaccine analogy. Kids often develop signs of autism right around the time they get some vaccines, and for years it seemed there was a causality between the two. But vaccines don't cause autism; unfortunately, the timing of autism's early signs coincide with the same time kids get vaccines.
What I'm saying is that yes, some kids may develop tics and other things, but those things were probably going to happen anyway and they're not a direct result of the stimulants, most of the time.
In my professional experience, I've seen only one kid, a teenage boy, become hostile and aggressive when on Concerta. There were no other changes in his behavior.
And I would stake my professional reputation on the kid didn't have ADD and when you give a stimulant to someone who doesn't need it, it can whack out their brain while they're on the medication.
Ultimately, this is a terribly difficult decision, and what I would do is have my son try the meds and observe him. Is he quieter? Less rambunctious? Does he seem calmer? How does he feel?
If he sees ramped up or says he feels speedy or otherwise awful, I would take him off the Concerta.
I think you safely experiment with dosing him for up to a week. You'll know if the drug works by then.
posted by kinetic at 3:32 AM on August 19, 2014 [4 favorites]
Recent work strongly indicates that the drugs can stunt growth in children.
Any "stunting" does not appear to be at all meaningful, in our experience. My sons were both on Concerta or similar medication from age seven through seventeen. Both reached their predicted heights. One is six feet two and a half inches. The other, who was much shorter from birth and throughout childhood, ended up average in height at five feet ten inches. Both are slender.
posted by artistic verisimilitude at 9:29 AM on August 19, 2014
Any "stunting" does not appear to be at all meaningful, in our experience. My sons were both on Concerta or similar medication from age seven through seventeen. Both reached their predicted heights. One is six feet two and a half inches. The other, who was much shorter from birth and throughout childhood, ended up average in height at five feet ten inches. Both are slender.
posted by artistic verisimilitude at 9:29 AM on August 19, 2014
I've taken Concerta, (extended release version) as an adult. It helped with ADD symptoms, but otherwise had very little noticeable effect.
I wish I could have found out about it around the 5th grade. It might have changed my life for the better.
(That said, I don't take anything now, I've found that adding a TON of physical exercise to my schedule, and working as a programmer reduces the need for me to be on stimulants, including coffee.)
posted by bashos_frog at 2:44 PM on August 19, 2014
I wish I could have found out about it around the 5th grade. It might have changed my life for the better.
(That said, I don't take anything now, I've found that adding a TON of physical exercise to my schedule, and working as a programmer reduces the need for me to be on stimulants, including coffee.)
posted by bashos_frog at 2:44 PM on August 19, 2014
This thread is closed to new comments.
The possible side effects -- especially the permanent/long term ones, are extremely unlikely and, in my opinion, minimal compared to the side effects of continuing to live how he's living. Virtually all of these types of medications are trial and error at this point, and it will be that way for a long time longer, so we do what we can.
posted by brainmouse at 1:34 PM on August 18, 2014 [22 favorites]