ADHD meds and side effects
December 27, 2016 2:25 AM Subscribe
My kid has tried a few different stimulants in varying doses, and invariably, has a crash at the end of the day that leaves her emotionally low, grouchy, physically exhausted, and cumulatively over the weeks, leads to depression. On the other hand, without meds, the kid is unable to do school successfully. I'd like to hear from folks who take these meds and have a similar experience, how do you manage this.
We've tried Concerta, Metadate and Focalin since the kid started these meds at around age 8, which was 6 years ago now and have tried different dosing. Haven't branched out into other drug classes.
The stimulants make school possible: (without them classwork does not happen; extreme spaciness, class disruptions, meltdowns, rage explosions, and calls from the principal do. So I think we have to use meds as long as school is happening.) However, the kid does not like meds and feels emotionally flat when on them. Because of this, she generally does not take them on the weekends and this year basically didn't use them all summer. When she is totally off meds (like in the summer) she still has emotional ups and downs, but overall has more energy, expresses feeling happier and just overall better.
We've recently tried taking a quite low dose, and based on feedback from teachers, it seems that just isn't enough to make her function in school. So now I just feel stuck and would love your suggestions. I feel like an asshole really compelling her to take meds when she says they make her depressed. (She does not want to try additional psychotropic drugs for depression at this time.)
She does regular, vigorous exercise and has a long walking commute to school each day. She goes to bed at a reasonable hour and has limited screen time. She even joined a meditation group recently.
Any other ideas? I'm open to alternative medications or novel dosing ideas, along with other interventions to mitigate the 'flat' feeling and the crash she gets.
(FYI, I am in dialog with her doctor about this - hence trying different meds and doses - but realistically, we are members of a large HMO with a notoriously under-resourced behavioral health department. When you have questions about ADHD there they send you to a very generic class that is not helpful. I would like ideas from people who have lived experience with this and will follow up with specific medical questions with her doctor as needed. Thanks!)
We've tried Concerta, Metadate and Focalin since the kid started these meds at around age 8, which was 6 years ago now and have tried different dosing. Haven't branched out into other drug classes.
The stimulants make school possible: (without them classwork does not happen; extreme spaciness, class disruptions, meltdowns, rage explosions, and calls from the principal do. So I think we have to use meds as long as school is happening.) However, the kid does not like meds and feels emotionally flat when on them. Because of this, she generally does not take them on the weekends and this year basically didn't use them all summer. When she is totally off meds (like in the summer) she still has emotional ups and downs, but overall has more energy, expresses feeling happier and just overall better.
We've recently tried taking a quite low dose, and based on feedback from teachers, it seems that just isn't enough to make her function in school. So now I just feel stuck and would love your suggestions. I feel like an asshole really compelling her to take meds when she says they make her depressed. (She does not want to try additional psychotropic drugs for depression at this time.)
She does regular, vigorous exercise and has a long walking commute to school each day. She goes to bed at a reasonable hour and has limited screen time. She even joined a meditation group recently.
Any other ideas? I'm open to alternative medications or novel dosing ideas, along with other interventions to mitigate the 'flat' feeling and the crash she gets.
(FYI, I am in dialog with her doctor about this - hence trying different meds and doses - but realistically, we are members of a large HMO with a notoriously under-resourced behavioral health department. When you have questions about ADHD there they send you to a very generic class that is not helpful. I would like ideas from people who have lived experience with this and will follow up with specific medical questions with her doctor as needed. Thanks!)
You might want to go outside your hmo and see a psychiatrist if that is financially fiesable.
posted by HuronBob at 4:14 AM on December 27, 2016
posted by HuronBob at 4:14 AM on December 27, 2016
My partner with ADD (diagnosed as an adult) tended to crash pretty badly at the end of the end of the day when she first started meds. Her doc fixed it by spacing 3 fairly low doses through the day.
posted by mkuhnell at 5:10 AM on December 27, 2016 [3 favorites]
posted by mkuhnell at 5:10 AM on December 27, 2016 [3 favorites]
I'm a high school teacher/parent of kid with ADD and have seen so many families struggle with getting this mixture just right. Seconding HuronBob -- you want to talk through the options with a child psychiatrist who can better speak to these meds. As far as dosing, have you tried extended-release versions or mid-day dosing? I've seen meds wear off around lunchtime for a lot of kids, and it all goes downhill from there.*
You note she feels flat when she's on the meds but when she's not, she melts down and has rage explosions. Part of the issue here is that her normal is comprised of pretty severe behavior, so I think some of the conversation needs to be about that explosive behavior. I'm not suggesting more drugs, but I think it's best to get a handle on the whole picture, both the inattention and the explosive stuff. Having frequent meltdowns isn't typical for most neurotypical kids.
*Also seconding metasarah -- the expectation to sit all day may be part of what's causing the crankiness. My kid also outgrew the need for meds when he was around 14 and in high school classes where there was a lot less sitting around.
Has she even been fully tested for special education services? Is it possible she has a learning disability that everyone is unaware of and this LD makes school in general very challenging? A kid with ADD can qualify for special ed services if they require specially designed instruction to succeed. I think you should ask the school for an evaluation and figure out if there's something else causing rages. If there's an underlying issue and she can get appropriate support, she may learn enough strategies to perform better in school. She may not end up needing any medication at all.
I'd have her tested for Specific Learning Disabilities and also get a full neuropsych test done by the school. It's possible she's got ways of learning the school isn't addressing because they're not diagnosed.
posted by yes I said yes I will Yes at 5:43 AM on December 27, 2016
You note she feels flat when she's on the meds but when she's not, she melts down and has rage explosions. Part of the issue here is that her normal is comprised of pretty severe behavior, so I think some of the conversation needs to be about that explosive behavior. I'm not suggesting more drugs, but I think it's best to get a handle on the whole picture, both the inattention and the explosive stuff. Having frequent meltdowns isn't typical for most neurotypical kids.
*Also seconding metasarah -- the expectation to sit all day may be part of what's causing the crankiness. My kid also outgrew the need for meds when he was around 14 and in high school classes where there was a lot less sitting around.
Has she even been fully tested for special education services? Is it possible she has a learning disability that everyone is unaware of and this LD makes school in general very challenging? A kid with ADD can qualify for special ed services if they require specially designed instruction to succeed. I think you should ask the school for an evaluation and figure out if there's something else causing rages. If there's an underlying issue and she can get appropriate support, she may learn enough strategies to perform better in school. She may not end up needing any medication at all.
I'd have her tested for Specific Learning Disabilities and also get a full neuropsych test done by the school. It's possible she's got ways of learning the school isn't addressing because they're not diagnosed.
posted by yes I said yes I will Yes at 5:43 AM on December 27, 2016
Didn't see it mentioned, but have you tried the time-release formulations of the medications, such as Concerta ER? These deliver the drug over a span of 6-8 hours and avoid some of the high dosage levels that come with the standard pill. Also avoids the need to take more pills during the school day.
posted by JoeZydeco at 5:50 AM on December 27, 2016
posted by JoeZydeco at 5:50 AM on December 27, 2016
How well does your kid sleep during the week when she is taking the medication several days in a row? Is her sleep quality better when she isn't taking the meds? If your kid is on time/extended release versions of the drug, it's possible they are staying in her system too long, impacting her ability to get good sleep and leading to that cumulative physical exhaustion/depression you mentioned. Even though I think the extended/time release versions are more popular and a midday dose at school is likely annoying, an instant release version might get out of her system faster and let her get more/higher quality sleep.
posted by mjcon at 6:45 AM on December 27, 2016
posted by mjcon at 6:45 AM on December 27, 2016
Does she eat well while on the meds? I've heard of folks having to set reminders to make sure they eat. I posted a question recently about coping with the meds and advice included a breakfast with a lot of protein.
The meds can make you forget to eat, or make you eat less... And after a day of not eating adequately I'd definitely be cranky. So maybe see what she's eating on a typical day and help her set some reminders on her phone and pack her some nuts or hard boiled eggs or string cheese ... That might help.
posted by bunderful at 7:03 AM on December 27, 2016 [2 favorites]
The meds can make you forget to eat, or make you eat less... And after a day of not eating adequately I'd definitely be cranky. So maybe see what she's eating on a typical day and help her set some reminders on her phone and pack her some nuts or hard boiled eggs or string cheese ... That might help.
posted by bunderful at 7:03 AM on December 27, 2016 [2 favorites]
I remember that. I called it the Witching Hour. I was in high school and taking Concerta ER. My dose varied but I think I stayed on 32 mg the longest.
Now, as a college student, I take Ritalin (not extended release) and I don't notice it. I can take 10 mg 1-3 times a day. Usually I take a 10 mg in the morning and if I need another one I take one more or half of one, which you can't do with extended release. I don't have a Witching Hour anymore but I do notice a period where I get hungry and a little irritable. Not bad at all.
In high school I needed the extended release to get me through school and homework. Now I don't and I am very happy to be off of it.
To help her get through the Witching Hour:
Good luck to both of you!
I also want to encourage you to help her with her study skills outside of medication. No one did that for me and I spent more time lying to my parents about my homework than I did doing it. Now I have a hard time even opening my backpack after class. When you get the medication straightened out, make sure you don't neglect that part of her ADHD.
posted by meemzi at 7:18 AM on December 27, 2016 [6 favorites]
Now, as a college student, I take Ritalin (not extended release) and I don't notice it. I can take 10 mg 1-3 times a day. Usually I take a 10 mg in the morning and if I need another one I take one more or half of one, which you can't do with extended release. I don't have a Witching Hour anymore but I do notice a period where I get hungry and a little irritable. Not bad at all.
In high school I needed the extended release to get me through school and homework. Now I don't and I am very happy to be off of it.
To help her get through the Witching Hour:
- Talk to her about it. Does she realize what's happening? Can you plan for it and give her a heads up?
- Help her find something to do. Send her on a long bike ride. Give her books. Let her fall into a YouTube hole. Take out the paints or lego or clay.
- Find your Witching Hour role. Does she want to be left alone? (I did.) Does she want company? Does she want to be around people but not interacting?
- Observe her behavior for other ways to make it less bad. Does she want snacks? Letting her eat something may be well worth her losing her appetite for the meal. Does she do better if she's alone and ignored or if she's comforted? Does she want to Do Something or does she need to Veg Out? Is her walk home a waste of focus time?
- Talk to the rest of the family. Do her siblings (any siblings?) know to stay out of her way/cut her some slack /just let her have the remote and then they can have it after dinner?
- Make sure she eats lunch. (Just saw bunderful's comment, which reminded me.) I remember certain foods being easier to eat than others. Fruits and veggies were the easiest. Meats were tolerable. Bread was dry and horrible.
- We've tried X mg and Y mg. X was too high and Y was too low. Is there something in between?
- We've tried X, Y, and Z medications and we had A, B, and C problems. Can we try something else?
- We're noticing X, Y, and Z when the medication wears off. What can you recommend to make this better? What do other patients do?
- If she has been taking extended release, you should try a regular release. She'll have to take one in the morning, one at lunch, and one at home. This also gives her the option of flexing her med schedule if she doesn't have homework or if she needs a few hours of focus on the weekend. You can also split them if you find that she needs a little more or less for homework than she needs for school.
Good luck to both of you!
I also want to encourage you to help her with her study skills outside of medication. No one did that for me and I spent more time lying to my parents about my homework than I did doing it. Now I have a hard time even opening my backpack after class. When you get the medication straightened out, make sure you don't neglect that part of her ADHD.
posted by meemzi at 7:18 AM on December 27, 2016 [6 favorites]
As I think you know, there are several nonstimulant options for ADHD as well - here's one overview of a few from the American Academy of Pediatrics; the only other one I know of that isn't on that chart is Vayarin. If your daughter doesn't like the stimulants anyways, maybe you could ask her whether she might be interested in trying meds like those?
On psychiatrists: I've only ever seen a few in my life, one a very fancy "leading expert" doctor who literally wrote the book on these things, and most recently a harried no-frills guy. Neither have ever been willing to spend meaningful time discussing my medication options or given me more than a sentence of advice on any given side effect. So I've taken to researching things myself and asking for specific drugs (recently Wellbutrin - so not the stuff with potential for abuse) or dosage changes directly. It's not great but it is what it is. Maybe I just haven't found the right doctor, but my prescriptions have never felt super personal or tailored, so I wouldn't assume that a psychiatrist outside your HMO would be much more helpful (although I'm aware that some, somewhere, are).
posted by R a c h e l at 11:51 AM on December 27, 2016
On psychiatrists: I've only ever seen a few in my life, one a very fancy "leading expert" doctor who literally wrote the book on these things, and most recently a harried no-frills guy. Neither have ever been willing to spend meaningful time discussing my medication options or given me more than a sentence of advice on any given side effect. So I've taken to researching things myself and asking for specific drugs (recently Wellbutrin - so not the stuff with potential for abuse) or dosage changes directly. It's not great but it is what it is. Maybe I just haven't found the right doctor, but my prescriptions have never felt super personal or tailored, so I wouldn't assume that a psychiatrist outside your HMO would be much more helpful (although I'm aware that some, somewhere, are).
posted by R a c h e l at 11:51 AM on December 27, 2016
Oh yeah, and food is a good point. It's hard to overstate (at least for me) how much stimulants impact your appetite, and how much you don't even fully notice it, especially when you just get used to eating less (and therefore eat less even when not medicated). Big breakfasts are good (one doctor told me to just eat a big breakfast and big dinner, and not worry about lunch) but the option that's worked better for me is to try to drink some calories - I like a smoothie, a fancy juice, or a soylent meal replacement shake - midday.
posted by R a c h e l at 11:56 AM on December 27, 2016
posted by R a c h e l at 11:56 AM on December 27, 2016
We've gone through this with some degree with my niece. We tried wellbutrin, ritalin, and then moved to generic concerta er in an attempt to find something that was extended release and to avoid the crash. (we've also been playing the "what will insurance cover?" game.)
We are currently doing 10mg of adderall 2x day - once in the AM and once at lunch. This seems to work fairly well for her (in conjunction with lexapro, as she had depression before she started the ADD meds), and it seems to avoid the crash that we were experiencing. On the down side, it is really suppressing her appetite, so we are struggling with finding things she can eat without feeling sick, and she's eating far more on the weekends and breaks, as she doesn't take it unless she's in school. She's also working on making sure she eats a substantial breakfast before she takes her medicine in the mornings.
I know someone that swears by Vyvanse (it's extended release as well) and my mom is also on adderall/lexapro, and it works well for her.
We are working with an outside psychiatrist, and it is working well for us - he is familiar with the medications, and is willing to work with us to find something that works. It's taken us a year to find something that seems to be working, and has been a struggle. The crash that happens really sucks, and makes everything feel that much worse.
Good luck, and keep trying - it is incredibly frustrating, but once you find the right medicine and dosage, it makes a huge difference.
posted by needlegrrl at 1:05 PM on December 27, 2016
We are currently doing 10mg of adderall 2x day - once in the AM and once at lunch. This seems to work fairly well for her (in conjunction with lexapro, as she had depression before she started the ADD meds), and it seems to avoid the crash that we were experiencing. On the down side, it is really suppressing her appetite, so we are struggling with finding things she can eat without feeling sick, and she's eating far more on the weekends and breaks, as she doesn't take it unless she's in school. She's also working on making sure she eats a substantial breakfast before she takes her medicine in the mornings.
I know someone that swears by Vyvanse (it's extended release as well) and my mom is also on adderall/lexapro, and it works well for her.
We are working with an outside psychiatrist, and it is working well for us - he is familiar with the medications, and is willing to work with us to find something that works. It's taken us a year to find something that seems to be working, and has been a struggle. The crash that happens really sucks, and makes everything feel that much worse.
Good luck, and keep trying - it is incredibly frustrating, but once you find the right medicine and dosage, it makes a huge difference.
posted by needlegrrl at 1:05 PM on December 27, 2016
My prescriber suggested that I do mainly the immediate release (currently dexadrine) with a very small dose of ER in the morning to mitigate the crash effect. This works really well for me.
posted by fairlynearlyready at 10:49 PM on December 27, 2016
posted by fairlynearlyready at 10:49 PM on December 27, 2016
This thread is closed to new comments.
I know that school is probably not optional for your family, but isolating whether the cause of the symptoms is the meds or the misery of working all day might help in their management.
posted by metasarah at 4:07 AM on December 27, 2016 [5 favorites]