Questions for kids with ADHD taking Concerta - Mothering Forums
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#1 of 16 Old 07-13-2010, 08:56 AM - Thread Starter
 
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My son is 12, and after years of trying all other "natural" alternatives, letting him "grow out of it", etc etc etc, and after finally getting an official evaluation with a psychiatrist of ADHD-combined type co-morbid with Asperger's (and he's also SPD but she wouldn't diagnose that, but gave a recommendation for an OT who could) -- she recommended trying medication.

So, we're trying it. It had reached a point where his issues were getting in his way... more that just getting in MY way, IYKWIM. We homeschool, so getting him to "sit still and pay attention in class" has never been an issue. But when he's breaking his favourite things due to his carelessness, when he's unable to do the things he had planned and wanted to due to his lack of self-determination and motivation, and distractibility... when he's just "out of his mind" and out of control so often... Well, it was time to try it.

Plus, we've seen a lot of things settle down as he's matured. But not everything. Now that he's 12 and more conscious and understanding of his own issues, more aware and mature, we could safely say that most of the issues remaining were more than just stuff he would grow out of... and he himself wanted to try the medication.

Anyway! Our dr started him on Concerta on the minimum dose, 18mg. The first few days, he said he actually noticed when it kicked in, and when it faded later in the day. It was hard for him to describe the feeling, but he said he felt "nicer" for one thing heh... After the first few days, he said he no longer noticed it.

But I noticed the difference. It took awhile to be sure, because he normally has good days and bad days, and even with the meds he had bad-ish days, but there was still a difference overall. The kicker was a day where he was just off the wall, and I was thinking "wow, I guess it really isn't doing much for him after all", then at bedtime, clearing the kitchen, I found the pill he'd forgotten to take that morning...

Asking him how he feels on the days he didn't take the pill, he said that he felt like he knew he was "crazy, but I can't control it". When I asked him what his thoughts would be if we decided to stop the meds, he nearly cried... he likes the way he is on the meds better.

That was pretty telling to me, a good indication that this is the right route for him. And I realized it's like insulin for diabetics... most people make their own, their bodies balance blood glucose automatically, but some need to take it "artificially"... most of us balance our brain chemistry automatically but some folks need a little help.

He was still having his bad days, though, so we thought we'd try the next dosage and see if there was a difference. At his next checkup, that's what we did. He's been on the new dose (27mg) for about a week now. I think it's better, but that's where I was kind of hoping for some conversation with other parents whose kids are on Concerta, for their observations with their kids...

How do I tell when it's the right dosage? Does a dosage that is too high start having certain effects? He's not become a "zombie" or anything, he's still very active and full of personality. He does seem kind of moody sometimes, quick to tears, but he's always had that tendency and has been staying up late recently... perhaps in part due to the meds, which I know can disrupt sleep, but also we've been doing some late-night stuff recently. So it's reasonable that he's just tired. Is moodiness a common side effect, or a sign of a dosage that's too high, or is it most likely unrelated?

We haven't noticed any change in appetite, he's never been a huge eater and he's pretty lean, but he still ate three hot dogs for lunch one day... yet he lost 2 pounds between his checkups. We'll be keeping an eye on this.

I've noticed that his fidgeting has diminished like 1000%!!! His SPD 'tics' are also reduced in general. He is a sensory-seeker and was constantly crashing into things, wiggling, sitting upside-down, spinning, etc etc. Now he's practically *CALM*. And he's getting his work done under his own motivation, we're arguing less, he's happier (other than the moodiness mentioned above), he's more PRESENT, he gives better conversations and is more engaged... it's really quite remarkable.

But I'm really unsure how to tell when we've hit the BEST dosage. I know some folks go through months and months of trying not just different doses, but different meds, so I think we're pretty lucky that we're probably so close already. But what should I be looking for? What are some signs that it's too much?

I'm also just looking to CONNECT with other parents in similar situations, whether or not you actually have advice. I've been very anti-meds for a long time... well, not completely ANTI, just very much of the opinion that they're prescribed too much (thus causing negative bias against kids who actually do need it) and of course MY kid couldn't possibly be one of those who needs it, of course MY kid is perfectly fine ... so this is new territory for me.

Heather, mom to Caileigh 12/06 and aspie ADHD prodigy David 05/98 :intact lact
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#2 of 16 Old 07-13-2010, 10:24 AM
 
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My son is too young to officially be diagnosed but I can give you feedback as an adult. Both DH and I have ADHD. He hit a home run with adderal right off the bat. Perfect dose and perfect drug. He just felt better and while he still has his off times, that's normal.

I, on the other hand, had a terrible reaction to concerta. I then went to adderal and had to tweak the dosage but once I got to a place where I can function... that was enough for me.

Understand, the drug isn't going to make your son focus. It was allow him to focus when he chooses to do so. It isn't going to make him have good days 100% - just remove the obstacles to having a good day. The drugs are only part of the equation. Organization, time management and life skills are something that people with ADHD don't have naturally and need help with.

Your son should be your guide. If he can focus on his school work and feels good at this dosage, leave it alone.

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#3 of 16 Old 07-13-2010, 10:38 AM - Thread Starter
 
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Could I ask what your "terrible reaction" was?

And yes I understand about the drug not curing EVERYTHING. He still survives off checklists, even if the ADHD were "cured" he still has the Asperger's, which is partly involved with the lack of organizational skills. We still have a lot of work to do to help him learn self-management. But at least he's calmer, and he's just more HERE. He was often just out of control, yelling and flailing and goofing around like he wasn't even present, it's hard to explain but I would guess that those who have experienced it know what I mean.

Heather, mom to Caileigh 12/06 and aspie ADHD prodigy David 05/98 :intact lact
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#4 of 16 Old 07-13-2010, 11:56 AM
 
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my DS was on Concerta and the results were great but the weight loss was too much so we had to switch. DS went from 68 lbs to 60.5 lbs in 3 weeks when we upped to 27 mg so we switched to Stratterra and it isn't doing a damn thing *sigh* Literally we cna't tell the difference between when he forgets the pill and when he takes it.

Watch his weight mama.... it is a side effect of Concerta. W/ DS we are watching for when there is a balance between him feeling like himself and him being able to focus for longer than 3 seconds on something.

Good luck... :
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#5 of 16 Old 07-13-2010, 12:38 PM
 
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**disclosure** I have a rare disease which gives me weird reactions to meds which can make it a royal pain in the neck to find the right medications when I need them.

It blew up my anxiety the point where nothing I took was settling me back down. Stopped taking it and was back to normal in 48 hours.

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#6 of 16 Old 07-13-2010, 12:51 PM - Thread Starter
 
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Ah, gotcha. So not something that would be a 'typical' side effect reaction for folks without your disease. Thanks for the info.

Heather, mom to Caileigh 12/06 and aspie ADHD prodigy David 05/98 :intact lact
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#7 of 16 Old 07-13-2010, 01:39 PM
 
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There are many different meds for a reason. Everyone responds differently. I know people who've done great on concerta. Others do well (like me) with adderal.

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#8 of 16 Old 08-12-2010, 04:09 PM
 
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Quote:
Originally Posted by tankgirl73 View Post
I've been very anti-meds for a long time... well, not completely ANTI, just very much of the opinion that they're prescribed too much (thus causing negative bias against kids who actually do need it) and of course MY kid couldn't possibly be one of those who needs it, of course MY kid is perfectly fine ... so this is new territory for me.
This is what we thought.

We just went to a child pych today to prescribed Concerta for ds, 6. We will start him on it tomorrow. I'm glad that we will have a chance to start it out before school and hopes it works as well for him.

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#9 of 16 Old 08-18-2010, 12:14 AM
 
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Well, the good news is that ds isn't loosing weight, having problems sleeping, or other side effects.

The bad news is that it hasn't had any discernible positive effects either (for a schedule II drug there's a whole lot of nothing going on); though Ds did (rather suddenly) decide that he is willing to do extra chores to earn money towards a Lego toy he really wants. Today we upped his allowed dose; tomorrow will be a bit of a test as we have a 4hr orientation at his new school; fortunately dd is staying with Auntie so I can concentrate on ds.

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#10 of 16 Old 08-19-2010, 08:54 PM
 
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DD is on Vyvanse rather than Concerta, but its a similar drug. My understanding from our psych is that "too high" a dose will reduce personality. For us, it was a matter of upping the dose until we got to a point where it was doing "enough". Since DD is all of 37 pounds, that was actually just the starting 20 mg. pill. She still has some rough patches and on the one day each week she needs to hold through till bedtime she actually needs an adderal booster to get her there. But since she can now sit and participate in class and I am not constantly wanting to strangle her or telling her "please lower your voice", that is enough for us. It sounds like you might be at about the same place.

I think both Vyvance and Concerta have similar side effects, which do include sleep difficulties and moodiness. So if those don't smooth out once you are back on a more normal routine, you might want to fiddle with the dose a bit. But then again, its a constant balancing act. You sort of have to figure out what you both can live with.

Do watch the weight thing. DD was already underweight when we started this whole journey and lost about 5 lbs. after we started the Vyvance. I have to be really careful to make sure that the few bites of food she will eat during the day are very calorie and nutrient dense. And I will sigh but give her a second dinner at 8 PM when she asks for it since she clearly needs the food and its not until then that she is hungry. Messes up bedtime, but I keep reminding myself its worth it.

I understand the reluctance to start medication. I hate the "idea" of giving her the drug, but I have to admit that I, and her teachers, love the results. Since I take an anti-depressant, its not like I can say much. Ideally, she wouldn't need it. But its not fair to make her struggle when she doesn't have to. And I'm very confident we aren't doing this "for convenience", so I've made my peace with it, more or less.
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#11 of 16 Old 11-25-2011, 08:01 PM
 
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So one year in, how are people's kids doing?  I'm just starting tomorrow (my son's starting, I'll be watching...) and I'm curious.  I fought it a LONG time.

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#12 of 16 Old 11-26-2011, 07:54 AM
 
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Ds stayed on the second dose of Concerta for nearly two months, but after the first month his impulsivity issues started getting worse and worse. We tried upping the Concerta again but that made all his symptoms worse, so we switched to Vyvanse...in November, I think. He stayed on the 40mg dose of Vyvanse until March when we upped it to 50mg; he is still on the 50mg dose. Interestingly, he didn't make much progress in therapy until the 50mg dose of Vyvanse.

 

His sleep is good (usually dosen't like going to bed, but we gave him a lamp timer that gives him 30 minutes of reading time), and his appetite is fine. He's finally passed 60lbs and has grown about 1.5 inches since last year.

 


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#13 of 16 Old 12-12-2011, 04:54 PM
 
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Thanks for the response.  DS says he has a hard time getting TO sleep, but he doesn't wake at all until morning, so he's happy.  I don't REALLY notice a difference, which is good because i don't want a zombie.  But bad, because how can i track this?

 

I don't have the teachers tracking, because he won't let me tell the teachers he is on medication.  (Doesn't trust them to be discrete.)

 

So for now it's just us watching.

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#14 of 16 Old 12-13-2011, 02:09 PM
 
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I am on concerta and have been for years. I also have trouble falling asleep so I take melatonin for that.


*~Kelly~*
 Waldorf Mom to 9 blessings ~6 by birth and 3 by fost/adopt~

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#15 of 16 Old 12-14-2011, 04:44 AM
 
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We use melatonin as well; it's an over the counter supplement. There is a time-release version (not often available locally, I get it on amazon), a "regular" version, and drops. Sometimes I drink Sleepytime Tea Extra before bed.


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#16 of 16 Old 12-14-2011, 10:59 AM
 
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Thanks guys!

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