Update

[nature girl]

Well, I talked to Anna's doc last week, and he suggested upping her focalin dose to 15mg, to see how she does. Yesterday was day 3...I think she did quite well, calmer, no wiggling while we read, sitting still for meals, and she seems generally quite happy, her personality is unchanged. Which is nice, but...when she's been emotional, she seems more emotional than ever. I was seeing an increase in the intensity of her crying at 5mg and 10mg, but now when she's upset it's even more dramatic. (I should say the crying doesn't happen all that often, maybe twice a day, but still it can be overwhelming.)

 

The most dramatic meltdown came yesterday during math...She'd been doing well, quite focused, enjoying it. And then she decided on her own that she wanted to add 3 two-digit numbers, in her head. I knew she wouldn't be able to do it, so I suggested we do it on the white board or with rods, but she insisted on doing it in her head. She actually had an interesting way of calculating, and might actually have been able to do it if she hadn't gotten confused at a step. BUT when she got it wrong (I praised her for the methods she used, and for coming close) she just broke down. I asked if she wanted to move on or try it on the white board and she took the pen and wrote I CAN'T DO ANYTHING. It took her about 15 minutes to calm down. She still wanted to continue with math so I tried doing something easy so we could end on a high note, a multiplication lesson where she was supposed to draw 4 buttons on several dresses, and she was in tears because she'd drawn the buttons too close to the skirt...As I've said several times before, she's always emotional, but this was more dramatic over a single wrong answer than I've seen her.

 

I'm guessing it must be the meds. So now even though we saw good changes on 15 (and I think it IS a good dose for focus and calmness) I'm wondering if it's worth it. (Also, how would you handle a scene like that? I've always praised effort over results, and I praised her profusely for trying a hard problem, but she's always had some internal angst about getting answers wrong.)

 

 

 

 

[PeterPan]

Has someone done 5 Point Scale with her? I don't think you're going to have a medication-only solution to what is clearly a multi-faceted problem.  And although your SLP is working on social skills, you keep bringing up things that would call for a behaviorist to give you strategies for at home.  

[nature girl]

Well the meds are known to cause irritability in many kids, so I assume that's what's happening. We do 5 Point Scale, but everything is a 5 at the moment (because I'm sure it does feel like a 5 to her) until she calms down and admits it was a 1. And at this point she's not able to stop in the moment and do it for herself, but hopefully that will come in time.

 

The meds are really helping her sit with our mindfulness exercises, and that should eventually help in those moments as well. After math yesterday, we sat for 2 mindfulness tracks, and she came out of it extremely calm and happy.

[PeterPan]

We do the mindfulness every night, and frankly the more the better.  Like the whole stinkin cd.  AND the therapeutic listening.  If he does BOTH of those, he's pretty gold the next day.  

 

Yes, the meds cause irritability, and I know that's what you're getting at.  I still think you have to talk with the diagnosing doc. How often did she have these episodes before the meds?

[nature girl]

This severe? Not often at all, maybe once a month, and usually only from me saying no to something she really wanted to do. There was crying from frustration over something she's making/building every day or two, and still is, but with that she's always over it in a couple of minutes. Meltdowns over getting something wrong is brand new, those types of things never really used to bother her.

[PeterPan]

You'll have to talk it through with the doc.  What's the release on the XR for Focalin?  You might try logging times to see if there's a pattern to it.  Some of those meds have peaks and valleys.  

 

It might be that a different release would be more even.  Or like a 4 hour done twice, so only up and gradual down, not up down, up down.  But that would only be interesting if the behaviors were occurring when the meds were spiking.  Just something you could track.  I agree with you about being concerned, but it's also interesting that you finally have a dose that gives you a livable amount of improvement.  So if they could get there in a tweaked way, it still might work.  Which is back to the doc.  :)

Edited July 4, 2016 by OhElizabeth

[PeterPan]

Good night, have you looked at the ingredients?

[Citrusheights5]

I noticed with one of mine,(3 are on medication) he gets particularly emotional at times. He's turned in to quite the little crier. For us we noticed that it is because he is more "aware" because of the meds he is so incredibly hard on himself, and it is actually showing us the perfectionist /anxiety that always existed underneath. With Miles giving him meds allowed us to see the dyslexia underneath. And with Ben will then could see the SPD clearer. Sometimes these things are like onions and once you peel back a layer you find new ones underneath.

Just a thought to consider

[Ottakee]

We had mood irritability issues on some other meds, but found that Dexedrine was much better for mood issues.

[nature girl]

You'll have to talk it through with the doc.  What's the release on the XR for Focalin?  You might try logging times to see if there's a pattern to it.  Some of those meds have peaks and valleys.  

 

It might be that a different release would be more even.  Or like a 4 hour done twice, so only up and gradual down, not up down, up down.  But that would only be interesting if the behaviors were occurring when the meds were spiking.  Just something you could track.  I agree with you about being concerned, but it's also interesting that you finally have a dose that gives you a livable amount of improvement.  So if they could get there in a tweaked way, it still might work.  Which is back to the doc.   :)

 

Well that was a good call...The XR has a dip between 3-4 hours before it starts coming back up again, which was exactly the time we were sitting for math, so maybe that was part of the problem? (She seemed quite focused, though. I was shocked, shocked I tell you! that she wanted to try to add the three numbers when it wasn't even part of the textbook. That never would have happened a month ago.) Focalin XR is actually supposed to be one of the smoother release meds, so I don't know if we'd get much benefit from trying another with a different release profile, but maybe? I'll ask her doctor...I've just been so pleased that Focalin doesn't seem to have any other side effects, her appetite is great, and she has no problem sleeping, even napped at 1PM Saturday during a long drive.

 

 

I noticed with one of mine,(3 are on medication) he gets particularly emotional at times. He's turned in to quite the little crier. For us we noticed that it is because he is more "aware" because of the meds he is so incredibly hard on himself, and it is actually showing us the perfectionist /anxiety that always existed underneath. With Miles giving him meds allowed us to see the dyslexia underneath. And with Ben will then could see the SPD clearer. Sometimes these things are like onions and once you peel back a layer you find new ones underneath.

Just a thought to consider

 

This makes a lot of sense, thank you. I do think she has perfectionist tendencies, although never quite this bad, and that's where we've seen some of the issues with frustration tolerance. (I think I actually asked for help about something similar on LC a year or two ago before we even had a diagnosis...I remember geodob responding that it sounded like she was a perfectionist.) Especially when she thinks she's good at something, it kills her to have problems with it. I need to find some way to combat that, because this layer of the onion is arguably more upsetting than the hyperactivity/impulsivity. :(

 

 

We had mood irritability issues on some other meds, but found that Dexedrine was much better for mood issues.

 

Interesting...I've read good reviews about Dex. Were the other meds you tried also amphetamines or were they methylphenidates? I do wonder if we should try an amphetamine, just to see.

[PeterPan]

I think you can find that data on the dips and stuff with the meds.  Sounds like you have it.  So you're gonna have to get smart and go ok, she took it at x time, these are when the dips are, so THAT IS WHEN WE TAKE BREAKS, kwim?  And you're going to want to teach her.  It does her NO GOOD if you do all the regulating for her.  You're going to have to explain when we take these meds, it helps speed up parts of your brain, helping you notice and work better.  When the levels dip at these points (3 hours, 6 hours, whatever), we're going to want to take breaks.  Then it will kick in.  She's gonna own it, you're gonna own it.  

 

And track data, kwim?  Make a 12 hour chart of your day and mark what is going on and when or degree or whatever.  (focused more, focused less, blah blah).  Vyvanse is even, but Vyvanse is amph, not methyl.  I think your ped can tell you if there's cause to change, but I can't fathom changing if these are not considered problem side effects, since everything else sounds good.  Don't be jumpy!  Be stable!  

 

Will the school be providing any services during her ESY this summer?  Or they're gonna watch her for a grading period?  I'll bet they start supports sooner, rather than later.  You're going to have to LET her have behaviors so they can SEE them so they can HELP them.  They can't help and intervene when they can't see it.  

 

I'm not a doctor.  I just would think it's possible she's doing more, attempting more, therefore going to have more behaviors.  And if she doesn't understand that the meds go up and down, then she's used to being able to function (where her IQ is, where her brain wants to function), then the drop and the rug is pulled out from under her.  And you know in school they can track that and go ok, at this time of day she needs a break, things don't work.  Or you find that dip and time it to hit at lunch time or a time with low demands.  Or...  I have no clue because I'm not a ped.

 

You've come this far and you're making progress.  Even if a month or two or three from now your doc says hey, let's try another med, reality is she's better than she was before the meds, way better.  Nothing you're doing is harming her.

Edited July 4, 2016 by OhElizabeth

[PeterPan]

Is the dip to 0 or is it just *less*?  Like if she got used to her function, then in comparison it would be frustrating.

 

We also don't expect complete inattention, even off meds.  She wasn't straining to attend all day, so she was able to attend as the meds wore down.  Just like she used to attend *some* before the meds, kwim?  It's not like she had *no* attention before the meds, yes?

Edited July 4, 2016 by OhElizabeth

[kiwi mum]

Another thing to take into consideration is that day 3 of a new dosage is too early to judge long term effects. We were told to expect up to a week to adjust to each new dosage, so I would give it a few more days to see if this settles down. I would also work on things like math earlier in the day.

[kbutton]

I noticed with one of mine,(3 are on medication) he gets particularly emotional at times. He's turned in to quite the little crier. For us we noticed that it is because he is more "aware" because of the meds he is so incredibly hard on himself, and it is actually showing us the perfectionist /anxiety that always existed underneath. With Miles giving him meds allowed us to see the dyslexia underneath. And with Ben will then could see the SPD clearer. Sometimes these things are like onions and once you peel back a layer you find new ones underneath.

Just a thought to consider

 

We had a little of this, but it wasn't so much with emotion, it was inhibition--my son felt (for basically the first time) an awareness that people were looking at him and evaluating his performance (his competence, not his behavior).

 

On this vein, I would note that when my son had a bad reaction to a specific generic of the drug that works for him, his reaction was qualitatively different from a "regular" meltdown. It was very out of character for him rather than more of something we'd seen before. 

[PeterPan]

So, kbutton, are you saying that's a symptom that improved when you took the meds up another step?  This is the first dose she's had that has really gotten her to WOW THAT WAS A REALLY GOOD CHANGE.  Everything else was hedging. (just my observation, not a doctor)  So are you suggesting that one more dose up she might get the control?

Edited July 5, 2016 by OhElizabeth

[nature girl]

The dip is just less, it doesn't go down to zero...I'm looking at the release profiles of other meds, and it seems like it's as good as any of the LA meds (aside from Vyvanse and Daytrana), but that even plain old Ritalin IR twice a day has a smoother profile. So...if it turns out that the dip is a problem, we may switch to an IR med. I'll have to do more tracking. I can't say I've noticed a huge change throughout the day, other than rebound, but  we have a pretty relaxed schedule, and because I haven't tracked I probably won't notice unless she happens to do something that gets her upset at those times of day. I'll start doing potentially frustrating things with her at various points and take notes, and ask the ESY teacher if she notices anything (although I'm just realizing by the time she has that dip, it will be almost time for her to go home anyway.)

 

I think all the kids at ESY either have HFA or ADHD, so I assume they can handle any issues. I don't know that they'll do more than intervene if there are big issues, we'll see. There's no behavior plan/daily report card or anything like that (she doesn't have an IEP yet) but I wonder if I could ask for something simple. At some point, once she's settled in a bit, a child study team is going to be watching to see what sort of supports she might need if we decide to start her in ps next year...I'm almost tempted to keep her off meds on those days so we get more supports, because what if she behaves and attends the whole time? Will they not give her an aide after all? She isn't really a disobedient kid, distractable, yes, and she needs to learn to raise her hand/not interrupt/walk in line, etc., but other than that I don't know that they'll see huge issues. Especially since the atmosphere is more like a camp than a school, a lot of outside time, and only around 30 minutes of actual academics (centers) a day.

[nature girl]

I'm actually now wondering if we might try staggering the dose...We don't have the 15mg yet, I've just been using up old 10's and 5's...Maybe we could continue that way but give her 10mg first thing after breakfast and 5mg an hour or two later. That might level things out a bit...IDK, just thinking aloud, it might be something to try Friday when she's home all day, and discuss with her doc when we see her next week.

[kbutton]

So, kbutton, are you saying that's a symptom that improved when you took the meds up another step?  This is the first dose she's had that has really gotten her to WOW THAT WAS A REALLY GOOD CHANGE.  Everything else was hedging. (just my observation, not a doctor)  So are you suggesting that one more dose up she might get the control?

 

Do you mean about inhibition? I am not sure that was dose dependent. It worked well when it worked well, not parts and pieces coming in at different doses. He didn't get inhibition at one dose and attention at another from what I remember. Once we got to a certain dose, things got better, and then we tweaked from there. There was a lowest effective dose kind of thing, and then we did find that one more 5 mg bump was beneficial. I don't remember exactly why we did that last bump, but he did grow a lot. Maybe that made a difference for him. 

 

Inhibition in this case means a feeling of inhibition that would be like self-consciousness. It's not about stopping behavior (though that is definitely something that improves with meds). It's being aware of his own performance (like with singing for kids' praise team) and aware that others are watching him. Before meds, he just sang and didn't really notice any of that. As our behaviorist put it, taking meds for him is the opposite of what people are doing when they drink to lose their inhibitions-they might not want to lose their ability to stop bad behavior, but they might drink to give them the "courage" to ask a girl out or whatever. :-) He has a lot less inhibition when he's not on meds. He tends to not notice or think about what other people might be thinking of him.

 

Hope that explains things.

 

I think the changes with dosage sound very positive.

[PeterPan]

I'm actually now wondering if we might try staggering the dose...We don't have the 15mg yet, I've just been using up old 10's and 5's...Maybe we could continue that way but give her 10mg first thing after breakfast and 5mg an hour or two later. That might level things out a bit...IDK, just thinking aloud, it might be something to try Friday when she's home all day, and discuss with her doc when we see her next week.

 

You should call and ask a nurse.  I'd be very cautious, because those doses could peak and give a higher amount at points or something, dunno.  Talk with the nurse.  Besides, that would leave her low for hours at the beginning and hours at the end.  And it's not sustainable at school.  She needs to have a dose, go to school, come home.

 

That's a separate question as to how the meds/no meds would affect what they do with the IEP.  The school cannot legally compel you to put her on meds.  How does *she* feel about being on them?  Does she like how she functions better?  How is she going to feel if she goes to school without them and has behavioral problems?  Will she then refuse to go to school?  

 

What I find, and this is just me, is that I don't have to *try* to make my ds look worse than he is, lol.  I've had a lot of observers with my ds, frankly, and if I had some formula to turn it on, turn it off, to make him qualify under this or that, well you'd think I'd have done it, lol.  Times I think oh he's gonna be HORRIBLE today, he's fine!  And times I think oh he's gonna be golden, then he struggles with basic compliance.  It's just where his body is.

 

If simply putting her on meds gets her over all that hump, that's pretty telling.  I think it is realistic to wonder if they'll qualify her under social, etc. But what are you going to do then, not put her on meds all year?  They'll collect data and drop the aide if she's not needed.  They aren't going to keep paying for things unnecessarily.  

 

My guess is that after the honeymoon is over there will be plenty of behaviors for them to see.  It also sounds like with the meds she's DOING so much more that some of her weaknesses are actually MORE apparent, rather than less.  My ds actually seems MORE autistic now, after behavioral interventions, rather than less.  It's because we've removed some of the extremes, leaving all these funky quirks to become more obvious.  And because he's able to go out and do more, he's doing more of his calming behaviors (lining up things, etc.).  So before the behavior improvement, the other stuff wasn't as glaringly obvious to people.  Now they come into my house and people don't question.  Before, they'd just blow it off.  We had to remove the extreme behaviors so people could see what remained.

 

And I know someone silently is going on my lands, she did ABA, and now her poor child is having more autistic behaviors!  Fine, but he's now able to play with cousins, go on outings, participate in brief classes, etc.  Those things then need some down time, so yes I'm seeing things lined up, etc.  That's ok in my book, because he got to go do nice things he enjoyed instead of being LEFT or unable to.  That's good in my book!  And he's doing really well!  He actually asked another dc tonight what THEY would like to play.   :hurray:   :thumbup:  :svengo:

Edited July 5, 2016 by OhElizabeth

[Citrusheights5]

Kbutton, this was beautifully put. with the inhibition, and for my son once he was aware that others could see him. He wasn't just a genius in his own mind but needed to be considered smart by everyone. Thus began the perfectionist anxiety once he realized that perhaps others didn't see him as he saw himself. It was a part of his personality, but one he never delt with because he wasn't aware enought/or had the level of inhibition to see others perspectives. He simply came off as aloof to his peers, when it was a kind of arrogance.

[nature girl]

Just as an update, Anna had a followup appointment with her doctor today, and we're sticking with the 15mg focalin. (She didn't think insurance would approve a 30 day supply of both the 5 and the 10, for me to try to stagger them...)

 

At our last appointment (and the appointment before that, last year) Anna had been all over the place, crawling under the examining table, trying to jump off it, pulling on me, pretty non-compliant...she was basically at her worst. (She's not usually that bad, this was late-afternoon and we'd been made to wait in the office for at least 45 minutes, so she was especially antsy.) Well this appointment was earlier, but we still had a long wait. And when the doctor walked in, and while she was talking with me, Anna was calmly reading a book...She answered questions politely, followed the doctor's instructions, waited outside the door for me even though she was excited about getting one of the cheapo take-home toys down the hall, and the whole time the doctor kept grinning and saying, "Wow...wow...wow..." Seriously, the doc was beaming, it cracked me up. But the change was obvious, she was a different child, and I guess seeing it through outside eyes finally convinced me this was necessary. Especially for school next year, where she'll have the kind of stresses/excitement and lack of one-on-one attention that tend to put her over the top. I may not notice it as much at home, but it's because Anna's not put under these sorts of stresses. (I notice a reduction in wiggliness during schooling, and less argumentativeness, but the hyperactivity wasn't enough to bother me.)

 

I talked to her about the increased emotion I'm seeing, and she suggested we try another med...Well, I'm a little hesitant to fool around because we really haven't had any side effects other than the occasional crying. I may change my mind at some point, but I don't know if another methylphenidate would change much...unless it's due to peaks and valleys, but I've tracked and haven't noticed much of a difference at different times of the day. (She still does better schooling with better focus in the morning, I don't know if that's a sign of how she's metabolizing or just because she's a morning person and more tired in the afternoon.)

 

So, at least for now there are more checks in the Pro column...I'm coming around to the idea that this is the best for everyone, and I've stopped wincing inside when I hand her the pills...And, you know, excited about her future instead of dreading the bad things that might happen. That's new for me. :)

[Lecka]

That sounds like a great appointment!

[Storygirl]

I'm glad it's going well! That's awesome!

[Tiramisu]

It's wonderful to hear about these positive changes.

 

And, yes, sometimes it's hard for us to really see the changes.

[kbutton]

:hurray:  :hurray:  :hurray:  :hurray:

 

That's awesome! 

[Kat w]

Nature girl, we always have an adjustment period on increases to the meds. Takes awhile for them to well...adjust lol. Up to several weeks on the last increase , but it was definitely needed and has now evened out.

 

Honestly I do not know how everyone affords all the evaluations, therapies , many curriculums. My husband makes a decent living and we could go broke if we did everything that's recommended .

 

I want more social thinking products. So...expensive. But they work and we are paying for the research and development that went into it.

 

Is be curious to know if it has evened out for you yet?

Edited July 15, 2016 by Kat w

[Kat w]

I went back and read some of the other comments. So glad it's going better for you :)

 

We are on vyvanse and LOVE it. My doc is anti alot of those meds but swears by vyvanse and so do I.

 

We take intuniv at the wear off stage of the vyvanse. It's an anti seziure med that works for so many other things. Anti anxiety . it's been a life saver for us.

 

I would discuss this with your doc. The crash from alot of these daytime meds are hard. Hard on the child, hard in the parent, plain ole hard on the entire family.

Won't hurt to try and it is phenomenal for easing anxiety and gives us the opportunity to work on self regulation .

[Janeway]

Focalin was terrible for us. We got my son off it and would never turn back.

 

I do not know your background story, but, from my experience, home schooling, ADHD meds are not that helpful.