Anyone decide not to medicate for ADHD after trying the meds?
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Anonymous
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My 7 year old daughter was diagnosed with ADHD-combined type a year ago after her kindergarten teacher recommended an evaluation because my kid seemed highly distracted. Her main symptoms are spacey-ness and distractibility. She loses things and often forgets what she's doing in the middle of a task--e.g. she start to make her bed and I'll come in 5 minutes later to find her talking to herself under her covers. She's totally surprised to see me and seems almost disoriented--e.g. "huh? what was I doing? Oh wait, is it a school day? Sorry--I was thinking of a story and then somehow forgot to make the bed and got in it instead. Did I miss school?"
Anyway, her current teacher reports that she's pretty fine in school, both on and off medications. She's distracted, but not disruptive because usually she's distracted by the stories she's telling in her head (so it's not like she's calling out answers or bothering other kids). The teacher doesn't report the level of spacey-ness we see at home. Per the teacher, my daughter is mostly on-task at school and is well-behaved. The teacher does acknowledge that she's not working up to her potential because of her distraction--e.g. she sometimes doesn't complete work or she misses concepts when she isn't listening. Basically, the teacher was like "your kid is really not one of my problem kids, so I have no advice on whether to medicate her." In the past year we tried vyvanse, which caused insomnia and then Concerta and Focalin, neither of which seemed to make a big difference, except for suppressing appetite and maybe making her a bit grumpy as they wore off. Her kindergarten teacher and the stixrud evaluator made me feel that medication was the only reasonable option. They said that she's missing a ton of content in school because she spaces out so much. That said, we're now half way through 1st grade and her 1st grade teacher says that my kid seems "fine." There are 25 kids in the class, some with pretty severe ADHD/behavioral problems, so I get that she doesn't think of my kid as a problem. Anyway, we stopped the meds during xmas break and haven't started them up again. I'm just wondering if anyone else has stopped the meds. Why? How did it go? Did you end up going back to the meds? My daughter said she's fine either way. She doesn't mind the meds, but says that she can't feel any difference. Thoughts? |
Anonymous
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I wouldn’t necessarily assume that she’s fine in school based on the teacher’s assessment, which often means she’s not disrupting other kids. If she’s missing half of the content, she is going to struggle going forward, especially in math which is cumulative. The fact that you are seeing more symptoms at home may mean she is working extra hard to focus at school, which means she has less resources for other things like learning how to socialize. It also may mean that the teacher is not observing her as closely as you are (likely). The structure of the school day probably helps. It is also going to affect her self esteem at some point. We didn’t medicate our DD because of these same reasons and I had no idea how much the sense of her own identity formed from the idea that she was spacey, immature and scattered. It became apparent later and if I could do anything again, it would be to medicate before I saw these social effects.
That being said, seven is young and I understand being conservative with meds. I’m not experienced with Focalin, but Vyvanse and Concerta are both long acting drugs. Especially Vyvanse which is 12-13 hours. Are you working with a psychiatrist? Your DD may do better with a short acting version in the AM and again at lunch. I have an older teen who does better with this - less appetite suppression, way less insomnia. I highly recommend the YouTube series How to ADHD which is a very bright young woman who had a later diagnosis of ADHD and how is affects her. Very positive but very eye opening. |
Anonymous
+1 I think this is a great response. Totally makes sense to be hesitant and conservative with meds, but I wouldn't put a ton of stock in a teacher with a large classroom saying she doesn't notice it since your daughter's symptoms are easy to fly under the radar. Also, it sounds like your daughter was on meds in the fall when you got this report so that seems like it actually goes towards the meds working (Kindergarten teacher felt it was very noticeable, first grade she is on meds and the first grade teacher is not noticing it) We haven't stopped meds and my son has the emotion regulation piece so meds have been an important piece for us but we've had a similar experience that preschool there were a ton of school issues and it was very obvious. Kindergarten there is more structure and he is on meds and teachers say he is generally doing great. He does a short acting just one dose in the morning Ritalin and that has been brilliant for him. Yes afternoons can be a little wild but we use other strategies for that and for now that works and we then have little side effects from the meds. I guess one of my questions is whether you are questioning the diagnosis generally? It sounds like no. If not, than I would just keep a very close eye because I do agree with the poster that kids sense of self is developed during these early years, so ideally you really want them to have the medication if they need it early so that the sense of self they develop is - I'm capable, I do well in school, I can stay on task when I need to most of the time, I have friends, etc. I think we sometimes don't give enough weight to the side effects of not medicating if a child really needs it. That all being said I think what you're doing is reasonable! Give a try, just stay vigilant. |
Anonymous
| To clarify, preschool no meds and the teachers said it was very obvious basically. Kindergarten the meds + structure combo teachers say he is doing great, but we chock that up to the medication working enough for him plus the structure and personally wouldn't consider removing meds at this point but we had the emotion regulation piece causing major issues prior! |
Anonymous
| We started and stopped lots of meds (Guanfacine, clonidine, Ritalin). Then we found adderall and it finally worked. No plans to stop now that we found the right drug. |
Anonymous
| If no one is noticing a difference she's probably not on the right medication at all. |
Anonymous
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My son has adhd and through his diagnosis I realized I (his mother) probably went undiagnosed as a child. I was like your daughter- my adhd internalized more and my sons manifests as more hyperactivity and emotional regulation issues in addition to the focus aspect.
I got through school fine without medicating, nothing was ever said to my parents who were shocked to learn as my diagnosis as an adult. I knew as a teenager that I could not focus, save for areas of passion where I was able to hyperfocus. Younger kids are more likely to have side effects from adhd meds. I would trial and error meds, but if she’s doing ok at school, you can take your time. My parents got me tutors in subjects where my focus impacted my ability to learn (namely math.) your daughter may independently decide she wants to try medication when she’s older and school gets more intense. In hindsight I wish I’d been medicated starting in middle school because that’s when my adhd started to really impact me. I compensated, but like your daughter was not at my potential. |
Anonymous
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Op, I have a second grader with ADHD combined who is undermedicated and we are trying to decide whether or not to work with her doctor to get to a more effective dose.
DD is currently taking concerta to help with emotional regulation and (mostly) inattention. DD is well behaved in school but would come home and lose it, so we started the medication. It made a huge difference at the right dose (36mg) until this year. This year her teachers told us she is a great student but does not participate a lot unless they call on her. They thought she was shy. DD is not shy - she is so spaced out during class and she doesn’t participate because she doesn’t know what the teachers are asking. She is at a small, mainstream private school with 20 kids in her class and two teachers. They are completely missing what is going on because she is well behaved and is keeping up academically. I understand your hesitation to medicate- we have been thinking about what to do with DD since November. But my point is that just because the teacher says she is fine does not actually mean things are fine. I do think it’s a parental call about how important it is to be able to focus at school - in first grade or K we medicated because learning to read and write and do basic math is critical. We feel like the pace in second grade and third at DD’s school is slower so things are ok for now. |
Anonymous
Exact same. Adderall has been life-changing for my DS! |
Anonymous
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My 7.5 year old DD was diagnosed with ADHD-Combined. She was having a lot of conflict with peers at school and with all of us at home due to emotional dysregulation. She'd also have a hard time staying on task if she didn't like the activity and her working memory was nonexistent. She'd forget what she was supposed to be doing 10 seconds after I told her. It really started to weigh on her and she would say things like, "I'm the one who always causes problems" or "I'm terrible."
We did OT for a while and when that didn't seem to help, we started her on Ritalin. It was a bit of trial and error to find the right dose to even determine if it was doing anything for her. We saw a bit of improvement when we first started but questioned if the mediation was worth it if that's the most we could expect. Turns out, we had to increase the dosage and add a second dose in the afternoons. Complete game changer! Her personality still shines through but she's able to focus and regulate, which is allowing her to change the narrative in her own head about who she is and how she relates to others. |
Anonymous
| ^^PP here. I should also add that we didn't get a lot of guidance from her teachers either. Even though DD would have conflict at school, it was always reported as being within the normal range for kids that age. The impetus for us seeking an evaluation and eventual medication was because it was wreaking havoc on our family life. We had gone to the teachers to get feedback to try to determine if it was something at home that was causing her to act like this or whether she was showing these signs at school, too. While she was, it was to a lesser degree. I honestly think the teachers didn't view her behavior as all that concerning because there were other kids in the class who were far more challenging and because my DD has the type of personality that teachers and adults just love. I think they overlooked or at least explained away her behavior for those reasons. I'm not blaming them at all, but just illustrating how teachers aren't always able to give us the clarity we may want in these situations. |
Anonymous
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Anonymous
Sorry, DP who tried to reply above but it got messed up. Is your daughter only on Ritalin? We have a child who suffers from emotional dysregulation as part of his adhd, which is much better while on a stimulant. But since he can’t be on a stimulant all day, we’re suffering the rest of the time at home. Mornings and evenings are very challenging. If you don’t mind my asking, how many hours a day is your daughter medicated, and does it impact her appetite or sleep? |
Anonymous
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Op here. This is very helpful! My kid doesn’t have emotional regulation issues as far as I’ve observed—she’s never explosive and her main way of dealing with conflict or disappointment is being mopey, but in a pretty normal way.
We are not overly hesitant to medicate I think—we’ve been trying medications. I’m just feeling disheartened that they’re not working (at least not in ways we/her teacher notice) and wondering if others gave up. It’s helpful to hear that others eventually landed on stuff that feels good to kids and makes noticeable improvements. I agree with what people wrote about the teacher’s thoughts. She has 25 kids in the class and my kid is the least of her problems. Without a clear behavioral or learning issues, her opinion is “your kid is fine.” The kindergarten teacher was more strict, so I think my kid’s spacey behavior bothered her more. She also seemed a bit more observant. Thanks! |
Anonymous
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Adding to the chorus - I think now is the perfect time to continue to fine tune medications. Fine, your DD might not be the hyperactive impulsive kid that sticks out, but trust me, as a parent of those kids we are in contact with the teachers and making iterative changes through time to find what works. Your DD might be keeping on with her daydreaming; it's not disruptive but it's still problematic.
What you describe of the Concerta and Focalin is that you were underdosed. Also what happens as the meds wear off are not technically side effects. The crash she is experiencing is also a sign of being underdosed. I would not wait until next year's more observant and strict teacher to start revving this engine again. It took us a year plus to find our meds and classroom interventions that worked. |