Welp...

[nature girl]

We started medication (Focalin XR, 5mg) for DD on Friday.

 

We had a neuropsych appointment, and she was all over the place, climbing to the windowsill, crawling under the table, unzipping the back of my shirt...The neurologist spent two minutes with her and said, "I think it might be time you considered meds." So.

 

We weren't planning on it so soon, but of course I've had it in the back of my mind for quite awhile, and seeing her Thursday just felt like a last straw. She'll be in an Extended Summer Year program with the public school this summer, with the thought of (possibly) moving her into public 1st next year. I guess my semi-convoluted thought was that if the meds do help her, she'd be better able to manage seatwork without all the adaptations I've put in place at home, or...if the meds work and she becomes more of a joy to work with, maybe I'll have an easier time keeping her home and not feel so overwhelmed. I don't know, we'll just keep both ideas open as we trial meds, and see how she does with the summer program.

 

Anyway, I'm noticing virtually no difference with the 5mg (smallest) dose. Still just as hyperactive. We did worksheets Friday as a kind of test, and she did well with them, but she actually doesn't mind worksheets as long as they're engaging, set up more like puzzles than like rows of addition problems, so it's hard to tell if she did any better than she would have normally. She also has been sitting with me for an hour at a time the past few days while I read aloud, but she does that at times anyway if she's enjoying the book. She always gets wiggly when she reads to me, and has been this weekend as well.

 

So, the jury's still out on whether this med (at least at this dose) will do any good. We have a followup next Friday. But I'm SO tempted to give the next dose up already (10mg) or even 7.5mg, since you can open and sprinkle the capsules on food. Now that we've made this choice I'm anxious to see results. (That would be a huge mistake, right?? We should wait the full week? I just was hoping to see some sign of calmness, but we're not there yet.)

Edited June 12, 2016 by Anna's Mom

[PeterPan]

Call your doctor.  

[nature girl]

Oh, I know, I'm not actually going to make any changes without her doc. And I know she wouldn't want us to increase the dose until a week is up anyway. (That's what the literature for all stimulants recommends.) I'm just impatient to see if this is the right med, worried that the fact we're not seeing much, if any, change is a sign that NO methylphenidates will work (or that she's really drug-resistant) and our options will be limited. I really don't want to have to give her a high dosage of any drugs. I'd rather give nothing at all than have her up at the limit for her age and weight.

 

On the plus side, she's not having any side effects. If anything, her appetite is even bigger than usual (she's always had a huge appetite) and she fell asleep last night with no problem. No more weepy/irritable than usual either.

[kbutton]

We found that we had to go up quite a bit, the dose stayed the same for a while, and then we had to bump it slightly again (and he's grown since we started, so that makes sense). Our indication for the small adjustment later was that he started to get a little unglued and a bit anxious about expectations he had been meeting with ease--too little is worse than no meds for us. Our second med was the winner (the long-acting stayed in his system WAY too long).

 

We increased doses fairly rapidly because we started so low. We just called the doctor, and he okay'd it each time. No big deal.

 

Hang in there!!! 

[Crimson Wife]

The stimulant (originally methylin and now metadate) helps my DD with focus and the non-stimulant (clonidine) helps with the hyperactivity. The combo works better than either one alone.

[nature girl]

Crimson, I thought Clonidine was only for sleep, no? You've noticed it also helping with her hyperactivity? (Does she take it once or twice a day?)

 

I thought both stims and non-stims were supposed to help with hyperactivity...I know guanfacine and Strattera are supposed to be better for emotional regulation (which we definitely need.) I'm really hesitant to add another med now, unless absolutely necessary, but I really was hoping to see her hyperactivity calm down, and I'm not seeing any effect at all.

 

Do they worry about blood pressure on Clonidine, since it's an antihypertensive? (DD's bp is low-ish, I think it was 90/56 when the neuropsych tested it, which is typical for her.)

[nature girl]

I should say too that there's a chance the 5mg really is helping with focus, and I just haven't put that to the test yet. I was gauging based on her level of hyperactivity and talkativeness, which I was thinking should change. She did write and illustrate an 8 page story today, which is maybe a sign of something? But it was later in the day, around 4PM, 9h after she'd taken the pill, when I would have assumed the effects would already be mostly out of her system.

 

I guess I'll do a regular school day tomorrow (which we haven't done yet, Friday was co-op so we only did a half hour in the AM and a little work in the afternoon), to see how she manages.

[Crimson Wife]

The way the psychiatrist explained it was that the non-stimulants are like a volume control knob being turned down. The clonidine does make her sleepy, which is why I give it to her only at bedtime (we had issues with her falling asleep at school when we tried doing it twice per day). At first, she was having to go in for a weight and blood pressure check every 3 months but now we only go in for the standard 6 month follow-ups.

 

We had Kaiser HMO insurance at the time she started ADHD meds, which is why I think they started with the cheaper clonidine rather than Intuniv. If she starts having anxiety issues we might try switching to Intuniv but right now I don't want to mess around with her meds.

[nature girl]

Thanks...I think from what I've read intunive is more effective than Clonidine, but also can have worse side effects (irritability, weight gain), it seems harsher to me. So yes, if it's not broken, no need to fix it!

 

We definitely could use some volume control here, both literally and figuratively, ha. I heard Barkley say it's best to have both a stim and non-stim so you can keep them at the lowest doses...so I guess we'll cross that bridge if/when we come to it. Really what I'm looking for most is emotional regulation, and pause button plus calming she needs to help with her social skills, all of which I've been working on for the better part of a year. They're 10 times more important to me than focus, really. It was probably unrealistic for me to think stims might be that magic bullet to help with all of it.

[Lecka]

It does sound nerve-wracking! I hope it will go well :)

[Mom28GreatKids]

Watching this closely as Anna seems to be my ds's mirror image in so many ways. 😃Hoping you find that magic bullet soon!

[geodob]

You need to give that dosage a try for a couple of weeks, to see whether it is effective.

If your saw an immediate effect, then it might suggest that the dosage is too high?

 

 

[nature girl]

You need to give that dosage a try for a couple of weeks, to see whether it is effective.

If your saw an immediate effect, then it might suggest that the dosage is too high?

 

I thought with a stimulant you should be able to see the effects right away, since they only last a few hours in the system. Is that not true? Could it become more effective over time?

 

I will say there were a couple of times on Friday, her first day, when she was overly emotional, seemed to cry in frustration/anger more easily and forcefully than usual. And that didn't happen the past couple of days, so maybe she's starting to balance out a bit. (But I could just be looking for things to call a result of the meds...She does get very easily frustrated in general.)

 

Schooling has gone pretty well so far this morning, but I can't say it's any better than other good days she's had, and she's still pretty wiggly.

[geodob]

Though the important difference is with the introduction of a stimulant to the system, which will be taken daily,  Rather than taking it once, for a quick effect.

Where I've read that over days, a sensitivity will develop to a low dosage.

In the same way, that any 'side effects' often take some time to appear.

 

Given that Anna might be taking a stimulant for many years?  

It is well worth taking the time, to establish the lowest effective dosage.

Which will allow for a possible dosage increase in the future?

[nature girl]

Interesting, thank you. I'd heard of side effects sometimes appearing after several months, but hadn't heard of effectiveness increasing. I'll wait it out! We've gone without for almost 7 years, so I should be able to stay patient for a few weeks or even months of tweaking. (I've read since first posting that increasing slowly over weeks can minimize or eliminate the appearance of side effects, so I know this is for the best.)

[Tiramisu]

Any updates?

[nature girl]

Sorry, I haven't been on the boards for awhile so I'm just seeing this...

 

She's doing okay, I think? More compliant in the morning, not as many outbursts. Still not a fan of math, but she's willing to sit for longer. (I have a new curriculum, Singapore, coming in on Monday, so we'll see how she does with the lessons and worksheets.)

 

There are times she seems to get overly focused on things, like today she pulled up a dandelion and was just staring at it for at least a minute, that worries me a bit. On the flip side there's still a decent amount of hyperactivity, especially from noon on, and I see a burst of it for an hour at around 5PM, which I assume is a rebound. (I give her the pill at around 8AM.) It's a very happy rebound, though, she just seems especially giddy and talkative. And she hasn't lost her exuberant personality at all.

 

A little more teary throughout the day, though, over pretty minor things. Like today there was a water balloon game at co-op, all the kids in a circle got a turn to throw the balloon to someone else and anyone who didn't catch it would be out...Anna threw the ball to someone and he missed and started crying, and she started crying because she'd been the one to make him cry...I don't think that would have affected her as much before. BUT, when she missed the ball, she took it very gracefully, didn't get upset at all, which I'm pretty sure she would have previously. So I don't know...some positives and some negatives, I guess.

 

I talked to her doc today, and she said to try the next dose up, to see if that decreases the hyperactivity...Well, that scares me a bit, because she does have the periods of over-intense focus on inanimate objects, but next week we'll try it to see how she does...Overall it's been good, though. Not a WOW, who is this person? kind of change, which I think I was expecting, if I didn't know she was on meds I probably wouldn't notice much, would just think she was having a series of good days, which she does have at least half the time. But maybe that's the ideal, and I shouldn't even try pushing it further...My guess is that she could use a touch more, but doubling the dose seems like it might be too much. I guess we shall see.

[Tiramisu]

For a very short time, we tried an ADHD med with my youngest. I gave it to her three times. She had that intense hyper focus and it scared me. Once she kept tying her legs up with yarn, around and around. She also had intense crying episodes, so I stopped it. I haven't felt the need to try anything again since VT and making drastic changes to her school routine. There are quirks there but none are too hard to live with for now.

 

This is just to say I understand how you feel.

 

Since my other child got an ASD dx since then, I have wondered how this reaction could be related to that type of wiring. But it could simply be another med or another dose would have had a better effect.

[ondreeuh]

Stimulants work right away, and don't need to build up in the system. They clear very quickly, so basically you are starting from scratch each day. So you can judge the effectiveness very quickly. Now, the side effects are a different matter. The body can take a little while to adjust to those, so that initial side effects (stomachache, difficulty falling asleep) often wear off after a couple of weeks - hyperfocus could probably be that way too. But I really don't think that the you need to wait to see if the dose is effective.

 

My boys both take Concerta during the day and Clonidine at night. Even at the 0.1 mg dose of Clonidine, it tires them out way too much to even think of using it during the day. At the tiny dosages that they're on, we have been told to not even worry about hypotension or other effects. They tolerate it well. The only downside is that they seem to have become psychologically dependent on it for sleep. It's not habit forming, per se, but it has done such a good job of sending them off to dreamland that their brains have forgotten to wind down for sleep without it. We are going to try weaning off for that reason this summer.

 

[intuniv is not really at all like Clonidine in my experience - less effective for getting to sleep, lots of drowsiness the next day, and not even helpful with the ADHD or emotional fragility stuff]

 

5 mg of Focalin XR is really, really, small. I wouldn't take the lack of a big change as any indication of her responsiveness to an appropriate dose. I do think there will be a level at which you have that "a-ha!" moment. I have it every single day when my 8 yr old goes from nonsensical nutball to a civilized human being about an hour after he takes his meds. And then you will look back at the time up until then and wonder how you ever got used to that.

Edited June 17, 2016 by ondreeuh

[nature girl]

Thanks, Misu and Andrea. The thing is, I kind of like the nutball (or at least I'm used to it, and like it because it's part of the girl I love?) I have a hard time imagining her as herself, without her being all over the place. She's a happy nutball, not an angry nutball, you know? I also think, for the most part, the issues--at least the major ones we've had--are reduced at this dose, so it almost feels like I should leave well enough alone. But yes, it's worth a try to see what happens, even if we have one really hard day.

 

This all is so hard and scary, though. I wish I knew for sure we were doing the right thing. Although unless we get an actual note from above telling us so, I'll probably never be fully sure.

[PeterPan]

I think the wearing off early is an indication the dose is still low.  I think if there's some spectrum and flat affect, it can be more obvious as you chill the hyperactivity.  It was there all along, and you couldn't see it for the extremes of the other behaviors.  I don't think you want to choose not to medicate at all just because the flat affect is becoming more obvious.  

 

And yes, I think you're showing you enjoy her both ways, both as the self you always knew was in there and the self she is off her meds.  :)

[PeterPan]

Thanks, Misu and Andrea. The thing is, I kind of like the nutball (or at least I'm used to it, and like it because it's part of the girl I love?) I have a hard time imagining her as herself, without her being all over the place. She's a happy nutball, not an angry nutball, you know? I also think, for the most part, the issues--at least the major ones we've had--are reduced at this dose, so it almost feels like I should leave well enough alone. But yes, it's worth a try to see what happens, even if we have one really hard day.

 

This all is so hard and scary, though. I wish I knew for sure we were doing the right thing. Although unless we get an actual note from above telling us so, I'll probably never be fully sure.

 

Just because you accept her as she is doesn't mean she was functional or that it was giving her skills to move forward.

 

How is her anxiety?  For some kids anxiety improves on the meds.  It would be another thing to watch.  You mentioned crying.  She's a girl, so I think crying like that would be reasonable.  It sounds like you're seeing a LOT of good changes!  I'd keep riding it out and let the doctor tweak and work on it.  Your doctor has no motivation to overmedicate, nor do you.  

Edited June 18, 2016 by OhElizabeth

[nature girl]

I wouldn't say she has a flat affect, she still is super-animated most of the time, just has had a few moments where she'll find something extremely fascinating, as if she's seeing it for the first time. Another example, we had butterflies hatch in the past couple of days, and she didn't want to leave the table for a half hour yesterday, just was gazing at them, touching the net, gazing some more. I can't decide if it was amazing or weird of her. (I mean, they are really cool, but not THAT cool. But then she made a really detailed butterfly costume for herself when she was done, including wings that open and close when she pulls strands of yarn, so maybe she was just studying them and planning the engineering of it? I don't know...The costumes are something she's been doing for awhile, but the sitting and staring is new.)

 

She hasn't had really any signs of anxiety that I've noticed, but then she didn't have all that many signs before, it was just fears of the dark and shadows, which she still has. Her little rituals have disappeared over the past year, other than one at bedtime where she hunches up on her bed while I turn off the light, then jumps up and says boo with a strange little laugh...That ritual has been going on for at least 3 months, but there used to be several more than that, which she was extremely adamant about. (I remember when we were chatting awhile back, I suddenly realized the decrease in rituals coincided with l-theanine use. Well I've stopped the theanine this week, other than a half a pill the other day to try to help her ease off her rebound, and haven't seen any change.)

[ondreeuh]

OK what you are seeing with the butterfly thing sounds really normal to me. You aren't used to her being able to sustain attention, so it seems weird and unnatural. However, it's possible that the meds have uncovered her ability to sustain attention and focus and take the time to smell the roses, so to speak. I definitely remember that with my kid. Seeing him calm was just so odd at first. But like Anna, he wasn't zoning out, he was actually really interested in what he was doing. And I got to see how much more he was getting out of life when he could slow down and really appreciate it, instead of zipping through and missing most of it.

[kbutton]

OK what you are seeing with the butterfly thing sounds really normal to me. You aren't used to her being able to sustain attention, so it seems weird and unnatural. However, it's possible that the meds have uncovered her ability to sustain attention and focus and take the time to smell the roses, so to speak. I definitely remember that with my kid. Seeing him calm was just so odd at first. But like Anna, he wasn't zoning out, he was actually really interested in what he was doing. And I got to see how much more he was getting out of life when he could slow down and really appreciate it, instead of zipping through and missing most of it.

 

:iagree:

 

As for being a happy nutball, I think what OhE said about functionality is important. I also think that if my happy little nutball was unzipping my shirt, I would be an angry nutball pretty fast! Especially if it's happening in a semi-public place like the doctor's office. 

 

I think you should ride it out, but I know it's hard to watch the process unfold.

[nature girl]

Well, another data point...She had a birthday party this morning, at a painting studio. She did really well concentrating on the painting, which took over an hour to finish, and she wasn't wiggly at all. She does like painting, and I've seen her spend quite awhile on art, but not an hour. She did get overly emotional though, weepy and angry when something didn't turn out the way she wanted, and then got mad at me when I tried to help. But that's typical for her, I guess I can't expect a stimulant to help with that, much as I wish I could fix it.

[kbutton]

Well, another data point...She had a birthday party this morning, at a painting studio. She did really well concentrating on the painting, which took over an hour to finish, and she wasn't wiggly at all. She does like painting, and I've seen her spend quite awhile on art, but not an hour. She did get overly emotional though, weepy and angry when something didn't turn out the way she wanted, and then got mad at me when I tried to help. But that's typical for her, I guess I can't expect a stimulant to help with that, much as I wish I could fix it.

 

It could give her the attention span to learn coping mechanisms over time. I am sure it's disappointing to not see that evaporate on its own though!  :grouphug:

[Lecka]

Have you ever looked at "how to talk so your child will listen, how to listen so your child will talk"? It has some ideas for how to talk to kids where you are like "I see you are upset" or something, and it is supposed to defuse some things where you are just trying to help but the child gets so angry.

 

It was helpful to me, anyway! And it is an easy read, and they seem like nice people.

 

I don't think it is like, oh, you will just not have any problems if you read a book, but it might be worth looking at.

[ondreeuh]

It could give her the attention span to learn coping mechanisms over time. I am sure it's disappointing to not see that evaporate on its own though! :grouphug:

This was true with us. We were finally able to make progress on coping skills once we started meds. I think this is very encouraging!

[nature girl]

Have you ever looked at "how to talk so your child will listen, how to listen so your child will talk"? It has some ideas for how to talk to kids where you are like "I see you are upset" or something, and it is supposed to defuse some things where you are just trying to help but the child gets so angry.

 

It was helpful to me, anyway! And it is an easy read, and they seem like nice people.

 

I don't think it is like, oh, you will just not have any problems if you read a book, but it might be worth looking at.

 

I haven't read the book, but I've seen similar techniques written elsewhere, and I do use them. I agree it helps to make the children recognize their own emotions, feel validated and understood. And I actually used that this morning, "I can see how frustrated you are that the lines didn't go where you expected..." Her response? Throwing down the paintbrush and saying, "Then I'm just going to scribble over the whole thing!"

 

The tantrum only lasts a minute or two, and then she's perseverant enough to go back and try to fix it (and again not get it "right" and explode...) Only a minute or two, but enough to have all the other kids staring at her.

 

Maybe on the right dose she'll be able to have a pause before the big emotions start, and can use her calming techniques? I think I might try the 10mg tomorrow, just to see, and try a more difficult craft with her to see what happens. Our Singapore books actually came in today, ahead of schedule, so I'm also going to try a couple of pages today and compare tomorrow, to see how she does.

 

(As I was writing this she came running up from the basement to show me a Daddy Long Legs, squealing with excitement, then ran to put it in her "bug pod" to examine. So her personality isn't dulled at all even now, when per the action graph the Focalin should be nearing its second peak. Good sign, I think.)

[Lecka]

Is she 6? I don't think kids would think it was a big deal when they were 6.

 

My twins are 7 1/2, and I think my daughter would have noticed last year, but I don't think it would have been a big deal to her or that she would have gotten a bad impression.

 

If she got over it pretty quickly and then continued with the activity, I think it is decent for that age.

 

I mean, some kids her age wouldn't do that at all, but enough kids do things I don't think it would be a big deal.

 

Last year my daughter came home one day and told me how her best friend had cried over something my daughter didn't think was a big deal, and we talked about how maybe she was having a bad day. Then the next day I think my daughter had already forgotten about it.

 

Anyway, I hope it wasn't a big deal to the other kids. I think it can depend, but hopefully it was not a big deal.

 

My daughter also has two brothers, so she is not a sweet little girl who has never seen another kid get frustrated. She is a sweet little girl with two brothers!

[PeterPan]

Didn't you say the doc is going to up the dose on the next scrip?  I'm guessing those explosions tame down a bit further.  

[nature girl]

I talked to the doc last week about what I'd seen, and she said to try having her take 2 of the 5mg pills whenever I was ready. So we started this morning.

 

I think she's doing well, although nothing profound, emotions are still a huge issue. And she still is defiant and angry when I ask her to do something she doesn't agree with (which I was really hoping would change.) Getting sunscreen on her this morning was so annoying (as always.) But she was able to focus pretty well on math, and picked up a book to read on her own, which she rarely does. (She only lasted 10 minutes or so, but still...) She got dressed without me standing over her. And she still is super-happy, and has her same exuberant personality, I think I was expecting that to be somewhat dimmed, but I'm glad it's not. I think she's a bit quieter, but by no means quiet.

 

So I wouldn't say it's a profound change, again I think if I didn't know she'd taken it I might just think she was having a good day. But unless she's excited or in a strange situation, she's never had the constant bouncing-off-the-walls hyperactivity that some kids have, so I guess the effects are going to be more subtle. When ESY starts next month, I'm going to try days on and off meds, to see if they can tell it makes a difference.

[PeterPan]

I don't think meds would improve non-compliance unless the non-compliance is due to impulsivity and hyper-activity.  If there's something going on in their mind that doesn't understand WHY they should comply, why they'll have a better time if they go along with what the other person wants, etc., that's not going to change just because you give them meds.  That's more your social thinking, perspective taking, theory of mind component.

 

If she's doing better on the meds, I wouldn't take her off during her school work.  Give her the chance to be her best self and have the habit of doing well and SUCCEEDING, kwim?  Why undermine that?  It makes no sense.  You can take her off on the weekends if you want to see how things change.  

[nature girl]

I guess my thought is, the main reason I have her on the meds is to potentially help her in school next year. So I want to see if they actually are having that effect...Right now I THINK they are, but the effect is still pretty subtle, so I honestly can't tell for sure. I'll be able to tell more this week, though, when we do more schoolwork.

 

I guess I was hoping the defiance would calm once her brain was calmer. Like...that she'd be able to pause and think through why I was asking her not to barrel into me for a hug after the first time I asked. (She's not all that defiant, not ODD or angry in general, just impulsive.) I also hoped she might be more willing/able to help with chores, but I realize that's probably just wishful thinking!!

[PeterPan]

You started at the super lowest dose, so that's why the effect is so subtle.  I think you won't know till you get it up to where it's going.  Impulsivity aggravates social thinking deficits.  You'll want to think in terms of *both*.  The school can add social goals to her IEP and work on that.

[kbutton]

Have you considered actually logging the behaviors? It might help you see a pattern of what is working better and what is not improved over time. Ideally, you would have data from before, but it could be that certain behaviors have decreased more than you think or will decrease over the next few weeks.

 

While the meds don't have a cumulative effect, feeling different on them might take some getting used to. Self-awareness can be heightened on ADHD meds, and that could cause her to be more self-critical. Maybe you need a technique to deal with that specifically. In another child, that self-awareness might bypass making the child critical of themselves and lead to more pro-social behavior, but not necessarily. I think that kids might also have more awareness, but have no idea what to do with it, and they might blame uncomfortable feelings on something else, including an adult placing a demand. My son inhibits some behaviors simply because he has a sense of potential embarrassment hanging over his head, not because he has this big change in his logic. As our behaviorist noted, people get drunk or buzzed to overcome their inhibitions as well--it's a two-way street.

 

It's really, really easy to acclimate to certain things or lump behaviors together that are really separate. I think logging behavior could potentially help.

[nature girl]

I don't want to up the dose anymore, 10mg is already more than I was hoping to have to give. But she did pretty well today.

 

 

Have you considered actually logging the behaviors? It might help you see a pattern of what is working better and what is not improved over time. Ideally, you would have data from before, but it could be that certain behaviors have decreased more than you think or will decrease over the next few weeks.

 

While the meds don't have a cumulative effect, feeling different on them might take some getting used to. Self-awareness can be heightened on ADHD meds, and that could cause her to be more self-critical. Maybe you need a technique to deal with that specifically. In another child, that self-awareness might bypass making the child critical of themselves and lead to more pro-social behavior, but not necessarily. I think that kids might also have more awareness, but have no idea what to do with it, and they might blame uncomfortable feelings on something else, including an adult placing a demand. My son inhibits some behaviors simply because he has a sense of potential embarrassment hanging over his head, not because he has this big change in his logic. As our behaviorist noted, people get drunk or buzzed to overcome their inhibitions as well--it's a two-way street.

 

It's really, really easy to acclimate to certain things or lump behaviors together that are really separate. I think logging behavior could potentially help.

 

You know, I tried to get an idea whether she felt any different, any clearer, and she said she feels like her normal self...She has some self-awareness of her attention difficulties, she's described them to me, and I'd think she'd notice if her thinking was clearer, but maybe not?

 

It might be worthwhile to log, but I don't know...Her main issues come with frustration, like the painting, issues with Legos or other art projects, that hasn't changed at all with meds, it's still once or twice a day. And today she blew up at me because she was cutting out and coloring a costume (which she likes to do without me watching so she can surprise me) and I happened to walk into the dining room, past her, to put something in the art supply cabinet. She EXPLODED, I mean for a full 5 minutes she was yelling at me for getting in the vicinity of her costume. The way she reacts to this type of thing is so variable though, another day she might just have yelled "Don't look!" but she's just as likely to explode, and there's no antecedent at all, her mood today was just fine beforehand. So I haven't noticed changes in her behavior/acting out at all...I just don't even know what I would log, because I really don't think there's a pattern. She's so inconsistent.

 

She does seem very happy this week, though, even after the meds have worn off. And thinking back, there were no times I felt like we needed to do heavy work to calm her hyperactivity, so she must be somewhat calmer than usual.

 

Because there are so many things she can typically focus on, including reading, various projects, writing stories, etc., and that's how she spends most of her time, it's hard to see any change there. The only school issues typically are handwriting and math, and she's still resistant (I was hoping it would make her more amenable, but she still tries to do whatever she can to get out of it...) and she works with me for 15 minutes before squirming and complaining about being bored. I still can't leave her alone to finish a worksheet. Reading aloud she's been a bit less wiggly, but does still move her leg. (Not crazy wiggling like before, though.) In general I guess she's calmer, not moving around as much, but she wasn't one to be crazy bouncing off the walls all the time either. So it's hard to tell! I see changes, but are they enough to make this worth it? The things I really, really was hoping to change haven't budged. I guess I'll stick it out for awhile, and then decide. :confused1:

[kbutton]

I think you need more time and to try the new dosage before deciding. It could be that the meds are doing nothing. If so, you might try a new med. You don't have to brain it all out at once. :-)

 

She may or may not think things are more clear--my younger son has had PROFOUND changes since doing vision therapy and things like that, and he says he doesn't feel any different. The child was crying and whining over every.little.thing, and now he's happy, but he says he doesn't feel any different!? Kids are not always reliable, lol! 

[PeterPan]

Well an ABC approach (antecedent, behavior, consequence) is typically used for autism and behavioral analysis.  What might be easier right now for you is just to type up a list of every category of behaviors she has and then make tally marks beside them as they happen.  You could just print a new page for each day, easy peasy.  My ds' tutor does this kind of data gathering, so we actually have lists of all the behaviors and can see whether they're decreasing with our interventions.  As the others are saying, you could be experiencing overall decreases that aren't as apparent when you're looking at one particular thing but ARE obvious when you look at data as a whole.

 

So for instance, a list like that could include:

 

noncompliance

aggression

repetitive sounds

leaving the group/space/plan

wiggling

needing sensory input to calm down

pulling/tugging to make demands

 

I don't actually know what she does, so just making up things there...  

 

So was today her first day at the new dose?  Maybe the 10mg will turn out to be really magic for her!  If she doesn't feel foggy on it, that's good.  I've heard 80% of kids can take ANY of the meds and be fine, so basically odds are this med will be fine once you get the dose tweaked.  That's great that your ped is working with you.  It's hard to be patient with these changes!  We want them NOW!  

 

And yes, I'll bet she does seem happy.  Imagine the feeling of competence when she realizes she can envision something and be what she wants to be, when calm, appropriate behavior is more in reach.  That would make her happy!  We think the meds are about *us* and making the kids easier for us to deal with, but I think that's an interesting point that *she* has feelings about them!

Edited June 20, 2016 by OhElizabeth

[Lecka]

I know this is picky, but there is an antecedent for what you say happened.

 

The antecedent is you walked near her.

 

That is the thing that happened right before the behavior.

 

If you did see (or know) that this is a common antecedent, you could try things like giving her a private space, or giving her a sign she can make and put up.

 

Or something like that.

 

I have had to make private spaces over things like that, but it is bc of siblings and not because of me.

 

I also wonder if maybe it is very hard for her to get interrupted and lose her train of thought? If that is part of it, then a more private space might help.

 

But she might not like that either. Just a thought.

[nature girl]

Well an ABC approach (antecedent, behavior, consequence) is typically used for autism and behavioral analysis.  What might be easier right now for you is just to type up a list of every category of behaviors she has and then make tally marks beside them as they happen.  You could just print a new page for each day, easy peasy.  My ds' tutor does this kind of data gathering, so we actually have lists of all the behaviors and can see whether they're decreasing with our interventions.  As the others are saying, you could be experiencing overall decreases that aren't as apparent when you're looking at one particular thing but ARE obvious when you look at data as a whole.

 

So for instance, a list like that could include:

 

noncompliance

aggression

repetitive sounds

leaving the group/space/plan

wiggling

needing sensory input to calm down

pulling/tugging to make demands

 

I don't actually know what she does, so just making up things there...  

 

So was today her first day at the new dose?  Maybe the 10mg will turn out to be really magic for her!  If she doesn't feel foggy on it, that's good.  I've heard 80% of kids can take ANY of the meds and be fine, so basically odds are this med will be fine once you get the dose tweaked.  That's great that your ped is working with you.  It's hard to be patient with these changes!  We want them NOW!  

 

And yes, I'll bet she does seem happy.  Imagine the feeling of competence when she realizes she can envision something and be what she wants to be, when calm, appropriate behavior is more in reach.  That would make her happy!  We think the meds are about *us* and making the kids easier for us to deal with, but I think that's an interesting point that *she* has feelings about them!

 

Okay, the way you've listed it makes a lot of sense, I'll set up that list today. Just for reference, she did well all day yesterday, even after the meds wore off (other than one incident where she refused to leave a neighbor-friend's back yard, had to be carried back home sobbing...) Other than that, she had a really good, happy day and evening.

 

One difference I'm seeing is that yesterday I gave the meds an hour before I asked her to get dressed, and she got dressed right away without distractions. Today I wanted her to get dressed before the meds had taken effect, and it was a huge struggle with distraction and defiance, as usual. So that's something I can track. She ate breakfast reasonably calmly and listened to the book I was reading as she ate, but was always popping up to take a look at the spelling of words she didn't know, out of her seat as much as in. Comparing this to lunch yesterday, where she stayed seated. And right now, an hour after meds, she's playing calmly and not needing as much interaction as usual. So yes, I'm seeing a difference.

 

Okay, I will start logging. I should be able to compare the frequency of issues before and after meds to midday when the meds are in her system. This summer I'll get more of a chance to watch than during the school year too, because the library starts up its summer programs next week (which she's always had a hard time sitting through) so that should be interesting and tell me more than I'm able to see at home.

 

 

And yes, I'll bet she does seem happy.  Imagine the feeling of competence when she realizes she can envision something and be what she wants to be, when calm, appropriate behavior is more in reach.  That would make her happy!  We think the meds are about *us* and making the kids easier for us to deal with, but I think that's an interesting point that *she* has feelings about them!

 

Oh yes, of course it's for her. I've been hoping for emotional regulation for her own sake, because I know how hard losing control is for her. I'm hoping the reduced impulsivity will help with her social skills. And I want her to be able to enjoy activities outside the home, which I've really had to restrict because they've been too much for her. I'm starting to get excited (even knowing it's way too soon to be excited) about the opportunities that this might open up for her.

 

 

I know this is picky, but there is an antecedent for what you say happened.

 

The antecedent is you walked near her.

 

That is the thing that happened right before the behavior.

 

If you did see (or know) that this is a common antecedent, you could try things like giving her a private space, or giving her a sign she can make and put up.

 

Or something like that.

 

I have had to make private spaces over things like that, but it is bc of siblings and not because of me.

 

I also wonder if maybe it is very hard for her to get interrupted and lose her train of thought? If that is part of it, then a more private space might help.

 

But she might not like that either. Just a thought.

 

Okay, that makes sense. (I was thinking of how some days this wouldn't have bothered her nearly as much, so was looking for something beforehand that might have triggered the extreme reaction rather than a milder one.) She actually said that from now on she's going to make her costumes UNDER the dining table...so she came up with her own solution.

 

Your interruption comment reminded me of another change that I don't know how to interpret...We usually have soft music playing while we work, but yesterday for the first time she said she wasn't able to read or concentrate on math while the music was playing and had me turn it off. I don't see how that could be related to meds, which should make her less distracted? But it's a change.

[Lecka]

She is aware of it now! I think what you are saying in the last couple of posts sounds very promising! I hope the library programs go better and that tracking ABC data will be helpful :)

[Lecka]

Oh, or, maybe it didn't distract her before bc it covered up distracting background noises, but now she doesn't need that.

[nature girl]

Okay, I guess that makes sense. I'm a little sad because I like my background music, lol.

[Crimson Wife]

  I think she's doing well, although nothing profound, emotions are still a huge issue. And she still is defiant and angry when I ask her to do something she doesn't agree with (which I was really hoping would change.) 

 

For my DD, this is symptomatic of the ASD and the ADHD medications have not made any difference (ABA has helped a lot, though). The stimulant means that she can sit and focus on her schoolwork rather than getting distracted by the other kids or whatever. The non-stimulant tones down her impulsivity (things like bolting out into traffic without looking) and general hyperactivity. The meds have made ABA more effective because DD is calmer & less impulsive but medicating alone without ABA wouldn't help with the tantrums & non-compliance.

[PeterPan]

I think you need more time and to try the new dosage before deciding. It could be that the meds are doing nothing. If so, you might try a new med. You don't have to brain it all out at once. :-)

 

She may or may not think things are more clear--my younger son has had PROFOUND changes since doing vision therapy and things like that, and he says he doesn't feel any different. The child was crying and whining over every.little.thing, and now he's happy, but he says he doesn't feel any different!? Kids are not always reliable, lol! 

 

Kids are BEYOND not reliable.  She's SIX, for pity's sake.  She has NO CLUE how she should feel or what is normal.  It's going to take you a while to get the med dose sorted out.  It's a learning process, realizing where she *could* be with enough support.  That support will include meds *and* some behavioral supports through the school probably.  Don't think of this as just one problem, because it's not.  Many kids with ADHD don't have the challenging behaviors you're describing.  It's a very strong reason to go on the meds, get them right, and STAY on them.  

 

 

For my DD, this is symptomatic of the ASD and the ADHD medications have not made any difference (ABA has helped a lot, though). The stimulant means that she can sit and focus on her schoolwork rather than getting distracted by the other kids or whatever. The non-stimulant tones down her impulsivity (things like bolting out into traffic without looking) and general hyperactivity. The meds have made ABA more effective because DD is calmer & less impulsive but medicating alone without ABA wouldn't help with the tantrums & non-compliance.

 

Unfortunately, this is the elephant in the room.  

[PeterPan]

Logging ABCs takes a some work and you have to have a strategy for it.  When we were doing it really actively for a couple weeks, I had SO many behaviors to log, I couldn't do it all at the end of the day, kwim?  I had to keep a notebook out and jot key words during the morning, then sit down at lunch and write it all out as ABC.  Then rinse and repeat for the afternoon and again for evening.  

 

When we did that logging, it very quickly became apparent to me how much I was missing.  We were having a LOT more behaviors than I realized in the blur of things, and there were patterns to them.  And, like Crimson, when we stepped up to ABA with a behaviorist we started getting radical changes.  

 

I can tell you that *I* would be concerned about the aggression and responses you're getting, because I've btdt.  It's not pretty where this leads.  Your dd is right at that age where over the course of a year we went from oh this is odd but we can sorta handle it to *wow we really are in trouble*.  Or, as Lecka tells me, your window for where people give grace for this is quickly closing.

 

For us what really busted through the "what is the label" and "what is going on" thing was bringing in a behaviorist, someone who could really just spend time with him, in our home, in his environment, where he could just be who he is.  At that point it was very obvious.  

 

It's ok to take this one step at a time!  Getting the meds was a GOOD CHOICE.  It let's you work on the hyperactive/impulsivity component, peeling away that so you can say ok now let's work on this next layer.  And asking for help with that next layer (the behaviors) is kinda scary and good too.  

 

Is the ps ESY this summer?  And are they providing services? OT? Anything?

Edited June 20, 2016 by OhElizabeth

[PeterPan]

On the logging, I think you should transition from asking whether the meds are helping (which they clearly are!) to asking how much is LEFT when she has the meds.  So get really methodical about this, kwim?  Give her breakfast and the meds at the same time every day, get some consistency there, and log behaviors.  You can log data if you want or log ABCs or both.  It's really *instructive* to log ABCs.  You can use your ABC data to tally behaviors.  I think it's also helpful not to make excuses for behaviors.  Like don't say oh but I know another 6 yo who does that so I won't log that.  Just LOG stuff, all of it.  

 

 

[PeterPan]

The music comment is interesting.  The meds are high enough for her to slow down and notice the things that are bothering her, but they're not at a point where she can tolerate the distraction.  And that's a good sign that she could self-advocate and say that! Did she doing it calmly or was she angry/exploding?  Either way, self-advocating is a good thing.  

 

In general, yes, it is HIGHLY recommended for these kids that they work in a minimal distraction environment.  So in the kitchen, with music on, with birds chirping, this is so the opposite of structure, environmental control, and minimal distractions.  ;)  But it's a process.  You're learning.  You'll see what they do with her in school too.  They might start with one set-up and create some structures for her that you realize would be good at home too.  They have classrooms with lots of kids, less kids, resource rooms, study carrels, etc.  I've seen some pics where schools are using inflatable canoes for kids.  :D

 

Some kids' impulsivity is making it hard for them to slow down and notice social cues, etc., yes.    You put them on meds, they notice, they get with the game.  Some kids need more help.  If you read Michelle Garcia Winner's stuff, she'll call it a "Social Learning Disability" and say that this SLD crosses labels.  So whether you're calling it ADHD or ASD or Tourettes or NVLD or whatever, this is a person who is going to need some extra-explicit instruction in social skills, emotional regulation, non-verbals, theory of mind, perspective taking, etc., to get things to come together.  So it's good to go ok, we got the meds, we brought in that layer of support.  Now let's advocate and bring in the NEXT layer of support.  It's like OG for a dyslexic.  You wouldn't say oh, you don't need OG, just try harder!  Nope, you'd get them something extra-explicit so they can finally see the pieces, bring their cognitive to bear, and get it to work.  

 

Social skills are that way.  We now have detailed materials, and she can have the interventions.  You've talked about how she wigs out when you try Zones with her.  My ds does this, and the behaviorist TOTALLY has his number.  She has done this enough that she knows how to do other things first, get him calmed down.  She'll keep him doing lots of physical while they work on it.  So he might be in a swing or throwing things or whatever.  For us, moving up to a behaviorist was the way to get that help.  And it's a separate piece, an additional piece.