Experience with Adderall?

[Quarter Note]

Would any of you who have experience with a child on Adderall please let me know how it has worked out for your child? My nine-year-old son's pediatrician prescribed Adderall for him for ADHD, and we're about to start it in the next day or two, but I'd really like to know if there are things we should be watching for. 

I have hope that it will help him, because we did a little experiment having him drink two cups of caffeinated tea every day, and while the caffeine didn't help much with his focus, it did seem to help his mood lighten up noticeably. So I'm hoping that the stronger meds will help with attention and executive functioning, but I'm also worried about side effects.  

Thank you!

[kbutton]

One of my kids tried Adderral and was super calm on it...and awake for 36 hours straight. Very abnormal reaction; Concerta was much better, lol!

I know an adult who took it, and it helped with focus but not impulsive behavior. It also affected body odor, not so much in person, but it really changes how laundry smelled and the smell built up in clothing. I’ve heard this more than once. You might want to segregate laundry if that happens and experiment with different materials and detergents.

Neither of these are necessarily typical things to have happen—lots of people take it and are fine.

[PeterPan]

11 hours ago, Quarter Note said:

I have hope that it will help him, because we did a little experiment having him drink two cups of caffeinated tea every day, and while the caffeine didn't help much with his focus, it did seem to help his mood lighten up noticeably

Oh my, that's a lot of caffeine! There is some info online about dosing for ADHD, but basically you only need a teeny tiny amount. It's like .1mg  per kg body weight. So everything beyond that is just overall stimulatory.

11 hours ago, Quarter Note said:

I'd really like to know if there are things we should be watching for.

Attention. Processing speed. Focus. Anxiety. You may possibly see all those improve and see it quickly!

I wouldn't assume things will go wrong. Our ped put it that 75% of people do FINE on the FIRST med they try. So this could literally be fine and I wouldn't worry about it. 

Remember, there are only two types of stimulant meds, so we're dickering over time release vs. non, etc. If you have a family history of bipolar or schizophrenia, then there's more probability you have some genes that are going to cause the dc to react aversely to the meds. Your doc should have already asked about this. It's super easy to predict, because it involves methylation genes and you're giving him METHYLphenidate. So the horror stories you hear about rages, etc. are because they had methylation cycle issues that would have been easily predictable with genetics. Just our psychiatry is barbaric and gives meds with little to no consideration of genetics. 

http://zonesofregulation.com/index.html  If you want something you can do in the meantime, you could start learning about the Zones of Regulation. For many kids with straight ADHD, it's enough instruction about watching what their body is doing that *paired with meds* they can get really good results. There's a lot of data saying pairing cognitive behavioral strategies with the meds (actually doing the cognitive behavioral strategies first, then meds) can be really good. I've known straight ADHD kids for whom it was dramatic. And you don't really have to buy the curriculum. Just read, look for some youtube and pinterest boards. I mean, I've got the curriculum, gone to the training. But it's more about you realizing and then helping him to notice.

That will make you more observant as you watch him with the meds to see what's happening. But I wouldn't assume it's going to go wrong! For the majority of the people, it's fine right out of the box, first day, very wow. My dd's first med was fine, great. If it's not, it's short acting and will clear from his system. 

Think positive! Keep us posted! I hope it goes well! 

[PeterPan]

11 hours ago, Quarter Note said:

the stronger meds

Hehe, the caffeine you were doing was already strong. He's not going to be able to tell you, but it's not that he needed it stronger. The stimulant meds hit more parts of the brain than the caffeine, so that's why they'll work better. When you get a really reflective teen like my dd or an adult, they'll actually be able to tell you how it feels different. But it's because the prescription meds are hitting more parts of the brain. 

Think positive! It's natural to be worried, but really this could go fine. 

[SanDiegoMom]

My daughter did badly on Adderall (only took it one day) but did better on Ritalin.  She's doing the best on Vyvanse, which is I guess chemically related to Adderall.  But she is 21 now, so I can't speak to the younger years. 

For her with all the short acting meds the thing to look out for is eating enough (she didn't eat enough and that created its own anxiety problems) and night time anxiety when coming off the meds.  But as the parent you can watch and control most of those.  My daughter was off at college and is a very unreliable narrator.  She kept not eating, having more trouble focusing, asking for an increase in dose (and getting it, no question! What the heck?) then eating and sleeping less, having worse and worse anxiety.... what fun! 

 

[Quarter Note]

10 hours ago, kbutton said:

One of my kids tried Adderral and was super calm on it...and awake for 36 hours straight. Very abnormal reaction; Concerta was much better, lol!

I know an adult who took it, and it helped with focus but not impulsive behavior. It also affected body odor, not so much in person, but it really changes how laundry smelled and the smell built up in clothing. I’ve heard this more than once. You might want to segregate laundry if that happens and experiment with different materials and detergents.

Neither of these are necessarily typical things to have happen—lots of people take it and are fine.

Thank you, kbutton!  I'll definitely watch out for these reactions.  

[Quarter Note]

6 hours ago, kand said:

My oldest started taking it at 18 with no side effects at all. Unless you consider anxiety reduction a side effect. It really helps her anxiety as well as her ability to focus and actually get things done. Oddly, it doesn’t even seem to affect her appetite or ability to sleep (she can nap while on it or take it later in the day and be fine). 
 

eta: and no funny smelling laundry 😊

That's good to know, kand!  I appreciate your feedback.

[Quarter Note]

49 minutes ago, PeterPan said:

Oh my, that's a lot of caffeine! There is some info online about dosing for ADHD, but basically you only need a teeny tiny amount. It's like .1mg  per kg body weight. So everything beyond that is just overall stimulatory.

Attention. Processing speed. Focus. Anxiety. You may possibly see all those improve and see it quickly!

I wouldn't assume things will go wrong. Our ped put it that 75% of people do FINE on the FIRST med they try. So this could literally be fine and I wouldn't worry about it. 

Remember, there are only two types of stimulant meds, so we're dickering over time release vs. non, etc. If you have a family history of bipolar or schizophrenia, then there's more probability you have some genes that are going to cause the dc to react aversely to the meds. Your doc should have already asked about this. It's super easy to predict, because it involves methylation genes and you're giving him METHYLphenidate. So the horror stories you hear about rages, etc. are because they had methylation cycle issues that would have been easily predictable with genetics. Just our psychiatry is barbaric and gives meds with little to no consideration of genetics. 

http://zonesofregulation.com/index.html  If you want something you can do in the meantime, you could start learning about the Zones of Regulation. For many kids with straight ADHD, it's enough instruction about watching what their body is doing that *paired with meds* they can get really good results. There's a lot of data saying pairing cognitive behavioral strategies with the meds (actually doing the cognitive behavioral strategies first, then meds) can be really good. I've known straight ADHD kids for whom it was dramatic. And you don't really have to buy the curriculum. Just read, look for some youtube and pinterest boards. I mean, I've got the curriculum, gone to the training. But it's more about you realizing and then helping him to notice.

That will make you more observant as you watch him with the meds to see what's happening. But I wouldn't assume it's going to go wrong! For the majority of the people, it's fine right out of the box, first day, very wow. My dd's first med was fine, great. If it's not, it's short acting and will clear from his system. 

Think positive! Keep us posted! I hope it goes well! 

Thanks, PeterPan!  We're really hopeful that it will help, I just want to make sure that I'm watching for all the right things.  

We tried Zones a couple of years ago, and it was useless for the kids at that time.  I'm hoping that once we get him on some meds we can revisit it, because it did look like a great curriculum.

[Quarter Note]

49 minutes ago, PeterPan said:

The stimulant meds hit more parts of the brain than the caffeine, so that's why they'll work better.

This makes a lot of sense.  Thank you for the explanation!

[Quarter Note]

21 minutes ago, SanDiegoMom said:

My daughter did badly on Adderall (only took it one day) but did better on Ritalin.  She's doing the best on Vyvanse, which is I guess chemically related to Adderall.  But she is 21 now, so I can't speak to the younger years. 

For her with all the short acting meds the thing to look out for is eating enough (she didn't eat enough and that created its own anxiety problems) and night time anxiety when coming off the meds.  But as the parent you can watch and control most of those.  My daughter was off at college and is a very unreliable narrator.  She kept not eating, having more trouble focusing, asking for an increase in dose (and getting it, no question! What the heck?) then eating and sleeping less, having worse and worse anxiety.... what fun! 

 

Oh, I'm sorry it didn't work for your daughter, SanDiegoMom.  Thank you for sharing her experience.  But I'm glad she's found what worked for her.  I'll watch out for all these side effects in my son.  

[PeterPan]

8 minutes ago, Quarter Note said:

We tried Zones a couple of years ago, and it was useless for the kids at that time.

If it's still not clicking after the meds, then look into this https://www.kelly-mahler.com/what-is-interoception/  To do the Zones you need *self awareness*. So for some kids, the meds get them there. For others, the interoception/self awareness deficits are enough that they really need specific instruction. So you end up needing to do something like the Interoception curriculum first, THEN the Zones. 

That's how it was with my ds. He had so so many therapists run through Zones with him. Every OT, social group, etc. was doing it. He just had zero ability to apply. We started working on interoception and out of the blue he's like "I can't use your stupid waiting strategies because I'M IN YELLOW ZONE!" Hahaha. 

So Mahler and Kuypers have done workshops together back to back, one day Mahler talking about the interoception/self awareness foundation and then Kuypers coming in with the Zones. It's a pretty common issue.

[Cake and Pi]

I really wouldn't worry about looking for side effects. You will *know* if your kid doesn't handle a stimulant well, and you'll know that very day, lol. If you see mild/moderate effects, they might advise you to try to push through, though, because sometimes the mild/moderate side effects will lessen or disappear after a week or two. Always report any concerning medication responses to kiddo's doctor.

We all have stories, but remember that each kid has their own unique neurochemistry and will respond uniquely. One of mine did freaking fantastic on a low dose, except that he eventually habituated and didn't tolerate a dose increase. He had tremors and screamed for 5 hours nearly continuously, then slept for 13-14 hours like he'd just run a marathon. Another of my kids transformed into a raging bull on stimulants, drastic decrease in eating and sleeping, threw a computer at his teacher at school, etc.

 

[PeterPan]

7 minutes ago, Cake and Pi said:

I really wouldn't worry about looking for side effects. You will *know* if your kid doesn't handle a stimulant well, and you'll know that very day, lol. ...Another of my kids transformed into a raging bull on stimulants, drastic decrease in eating and sleeping, threw a computer at his teacher at school, etc.

This is so true in general. There are exceptions I've heard, but it's usually situations of low verbal, nonverbal autism, where the behaviors that were a side effect of the meds were attributed to autism. Only when they pulled the kids off did they realize. But that would certainly not be the norm.

And yeah, that kind of aggression (from over methyls) is my ds' norm even without meds. People who work with him keep begging me to get him on meds and the docs won't do it. We have an appointment with a bigger fish doctor, so we'll see what happens. Maybe they'll have something up their sleeves. For my ds, sure I worry about him having side effects and not being able to tell us and us just thinking the behaviors are normal to him. But again, that's ASD2 with language/communication issues. 

You'll see some stories of adults and the side effects creeped up on them and weren't obvious till they went off the meds. It is just a reflection of that person's genetic issues. The stimulant meds are adding methyls, so if someone has issues with their methylation cycle, including vitamin D receptor (common!), COMT, etc., they're not pulling down those methyls and not going to tolerate adding more in. Unless they're like me with a mixture of MTHFR (low methyls) and those genes (don't tolerate methyls). Then it's more like controlled chaos, haha. I'm saying there are reasons why some people *might* react more slowly but still be reacting. They could be that mixture of MTHFR and the other defects, so it takes a while for them to realize they're on edge. 

Fwiw, the caffeine op was using is also a methyl donor. So, at least in my small experience, any behaviors the dc would have from the methyls in a low dose stimulant med they possibly also would have exhibited to some degree with the caffeine. Nuts, my ds is so sensitive *oranges* (as in the fruit!) set him off. And chocolate. And and. We have to be pretty careful with him. 

[Quarter Note]

On 1/6/2021 at 8:09 AM, PeterPan said:

We started working on interoception and out of the blue he's like "I can't use your stupid waiting strategies because I'M IN YELLOW ZONE!" Hahaha.

PeterPan, this is so funny!  I can imagine how your heart must have swelled that your kid was finally getting it!

Okay, I'm convinced - I'll look into Interoception after we get the meds smoothed out.  Thanks!

Edited January 8, 2021 by Quarter Note
spelling

[Quarter Note]

21 hours ago, Cake and Pi said:

I really wouldn't worry about looking for side effects. You will *know* if your kid doesn't handle a stimulant well, and you'll know that very day, lol. If you see mild/moderate effects, they might advise you to try to push through, though, because sometimes the mild/moderate side effects will lessen or disappear after a week or two. Always report any concerning medication responses to kiddo's doctor.

We all have stories, but remember that each kid has their own unique neurochemistry and will respond uniquely. One of mine did freaking fantastic on a low dose, except that he eventually habituated and didn't tolerate a dose increase. He had tremors and screamed for 5 hours nearly continuously, then slept for 13-14 hours like he'd just run a marathon. Another of my kids transformed into a raging bull on stimulants, drastic decrease in eating and sleeping, threw a computer at his teacher at school, etc.

 

Thanks, Cake and Pi!  We just got through Day 1, and nothing bad happened, but I didn't see any improvement in attention, but we'll give it a few more weeks.

[PeterPan]

46 minutes ago, Quarter Note said:

Thanks, Cake and Pi!  We just got through Day 1, and nothing bad happened, but I didn't see any improvement in attention, but we'll give it a few more weeks.

Was the dose really low? When my dd started, it was immediately evident. Of course she was a teen and could tell us what she was feeling.

Has he had his retained reflexes integrated? They can be another cause of behavior/attention issues. You could look on youtube for tests and make sure there aren't any that got missed.

https://www.brmtusa.com/what-are-reflexes

 

[Cake and Pi]

21 hours ago, PeterPan said:

And yeah, that kind of aggression (from over methyls) is my ds' norm even without meds. People who work with him keep begging me to get him on meds and the docs won't do it. We have an appointment with a bigger fish doctor, so we'll see what happens. Maybe they'll have something up their sleeves. For my ds, sure I worry about him having side effects and not being able to tell us and us just thinking the behaviors are normal to him. But again, that's ASD2 with language/communication issues. 

Good luck with the new doctor! We only see pediatric psychiatrists at a a mental health institute associated with a major children's hospital, and it's been soooooo worth it. My DS#1 was never even offered stimulants because of his history. 

You might want to keep a journal of your DS's behaviors, nightly sleep, general mood, frequency and duration of meltdowns, etc. for a week or two before beginning meds and then for at least a couple of months afterward. I assume they'll offer non-stimulants to you guys, and those can take 6ish weeks to build up in the system, so symptoms really can sneak up on you. Keeping journals has been super helpful here with med trials. I definitely feel like I'm taken more seriously when I bring up concerns about side effects. Doctors respond so well to data, lol. But it's also helpful just for teasing out what is really new vs. what is just normal bad days, you know?

 

2 hours ago, Quarter Note said:

Thanks, Cake and Pi!  We just got through Day 1, and nothing bad happened, but I didn't see any improvement in attention, but we'll give it a few more weeks.

Agreeing with PeterPan. You should see results from stimulants pretty much immediately. They are in and out of the system same-day and don't build up over time (assuming no metabolic issues). Did the doctor say you were starting with a lower dose with a plan to increase if tolerated? My DS 7 also just started a stimulant for his ADHD, and he was started on a very low dose with instructions to increase in 3 days and to follow up with psych in 1-2 weeks so we can report on if it's working or not and make further adjustments as needed.

[PeterPan]

33 minutes ago, Cake and Pi said:

Good luck with the new doctor! We only see pediatric psychiatrists at a a mental health institute associated with a major children's hospital, and it's been soooooo worth it. My DS#1 was never even offered stimulants because of his history. 

You might want to keep a journal of your DS's behaviors, nightly sleep, general mood, frequency and duration of meltdowns, etc. for a week or two before beginning meds and then for at least a couple of months afterward. I assume they'll offer non-stimulants to you guys, and those can take 6ish weeks to build up in the system, so symptoms really can sneak up on you. Keeping journals has been super helpful here with med trials. I definitely feel like I'm taken more seriously when I bring up concerns about side effects. Doctors respond so well to data, lol. But it's also helpful just for teasing out what is really new vs. what is just normal bad days, you know?

Thanks! Yes, this doctor will be at a *major* hospital behavioral health clinic, way up the food chain, not even in the big city near us but another big city with a strong reputation for health care. 

That's an interesting point on journals, hmm. Honestly I don't think they're going to do non stims either. I think we're looking at something like Abilify. I need to research it more, but that has been my guess/assumption. I was already turned down for nonstim meds for him because they said it wouldn't help his symptoms, sigh. It will be a 90+ minute appt, so I'm hoping we can get stuff sorted out. That's in another month.

I definitely will think about the journals, thanks.

[Quarter Note]

On 1/7/2021 at 8:42 PM, PeterPan said:

Was the dose really low? When my dd started, it was immediately evident. Of course she was a teen and could tell us what she was feeling.

Has he had his retained reflexes integrated? They can be another cause of behavior/attention issues. You could look on youtube for tests and make sure there aren't any that got missed.

https://www.brmtusa.com/what-are-reflexes

 

On 1/7/2021 at 11:23 PM, Cake and Pi said:

Agreeing with PeterPan. You should see results from stimulants pretty much immediately. They are in and out of the system same-day and don't build up over time (assuming no metabolic issues). Did the doctor say you were starting with a lower dose with a plan to increase if tolerated? My DS 7 also just started a stimulant for his ADHD, and he was started on a very low dose with instructions to increase in 3 days and to follow up with psych in 1-2 weeks so we can report on if it's working or not and make further adjustments as needed.

 

I think the dose is really low - whatever the starting dose is.  We have an appointment with the pediatrician in two weeks to evaluate.  I think the doc will up the dose then.

He was working with a PT/OT for retained reflexes last winter/spring until the clinic put everything on hold for the pandemic.  We tried doing Zoom meeting PT/OT, but my son can't focus on *anything* via Zoom (everything we've tried on Zoom for him has been a waste of time), so we've put that on hold.  I would like to start back up again once we've got him smoothed out with meds.

Yesterday was Day 2, and we saw about the same as on Day 1 - his mood was definitely better, and I could easily tell when the meds were wearing off, but he has a long way to go until he can focus.  And, he's noticing the difference:  This morning he told me, "I'm sorry I had a melt-down last night.  It was because the medicine had worn off."  

Do either of you know anything about the long-term concern about growth slow-down?  The literature that comes with the prescription doesn't give much info, and of course, the internet is all over the place...

Thanks!

[PeterPan]

2 hours ago, Quarter Note said:

He was working with a PT/OT for retained reflexes last winter/spring until the clinic put everything on hold for the pandemic.  We tried doing Zoom meeting PT/OT, but my son can't focus on *anything* via Zoom (everything we've tried on Zoom for him has been a waste of time), so we've put that on hold.  I would like to start back up again once we've got him smoothed out with meds.

They should have been giving you exercises to do at home. You do them every day for 45 days and you'll see the reflexes integrate.

My ds literally went from FERAL to calm with reflex work. It can make a huge difference.

https://www.pyramidofpotential.com/primitive-reflexes-foundation-for-learning/  The system that finally worked for us (after several attempts with various OTs) was from Pyramid of Potential. A PT was doing it with us, and she'd test and send us home with a list of exercises for a month. I think they run the dvd for $35.

Edited January 9, 2021 by PeterPan

[PeterPan]

2 hours ago, Quarter Note said:

This morning he told me, "I'm sorry I had a melt-down last night.  It was because the medicine had worn off."  

Wow, that's AMAZING!

If you can make data together on when the wear off occurs and how long it lasts, he can have a plan. He might want to lay low for that 30 minutes each day and not do anything too demanding.  

2 hours ago, Quarter Note said:

Do either of you know anything about the long-term concern about growth slow-down?  The literature that comes with the prescription doesn't give much info, and of course, the internet is all over the place...

My dd was already done growing when she started meds. She has lost a lot of weight because it's easy to get busy and not eat. Just make sure he eats. Take med holidays once in a while if you want. Some people will do that over the summer. You can put his growth info into online growth chart calculators and track his percentiles to make sure they stay about where they were. 

 

Edited January 9, 2021 by PeterPan

[Quarter Note]

On 1/9/2021 at 11:48 AM, PeterPan said:

They should have been giving you exercises to do at home. You do them every day for 45 days and you'll see the reflexes integrate.

My ds literally went from FERAL to calm with reflex work. It can make a huge difference.

https://www.pyramidofpotential.com/primitive-reflexes-foundation-for-learning/  The system that finally worked for us (after several attempts with various OTs) was from Pyramid of Potential. A PT was doing it with us, and she'd test and send us home with a list of exercises for a month. I think they run the dvd for $35.

The PT/OT did give us exercises to do at home, complete with what (I thought) would be a fun reward system.  But there was just no getting him to do anything he didn't want to do.  I really do hope that once he's stable on the meds we can get better compliance and go back to the clinic.  But if that doesn't work out, I'll look into the Pyramid of Potential DVD.  I had once looked into a couple of years ago, and it does look good.

On 1/9/2021 at 11:51 AM, PeterPan said:

Wow, that's AMAZING!

I hope it really is, and that he wasn't just saying it because he's smart enough to know to say what Mom wants to hear.  😉

 

On 1/9/2021 at 11:51 AM, PeterPan said:

Take med holidays once in a while if you want. Some people will do that over the summer. You can put his growth info into online growth chart calculators and track his percentiles to make sure they stay about where they were. 

We're testing with only doing the meds on school days.  So far this weekend has been okay.  But that you for the idea to put his growth into an online calculator.  I'll measure him tonight so that we have a baseline.

PeterPan, you're amazing!  You always give so much good information.  Thank you so much for all of this!

[PeterPan]

18 hours ago, Quarter Note said:

But there was just no getting him to do anything he didn't want to do.

The reflex exercises are exceptionally uncomfortable because you're basically flaring them up. Is your dc under or over responsive for sensory? I have one kid in each camp and some people are mixed. For my hyperresponsive dc, the exercises were EXCRUCIATING. Doesn't mean she could skip them, just that they needed modifications and extra supports.

So no, I wouldn't wait on the medications. Do what you want, but you may have more factors in play that need to be dealt with. You may need a new OT or a more thorough sensory processing eval to get you those extra answers for why he's avoiding them. ODD typically has an anxiety component.

For my ds, I found highly motivating videos that he ONLY got to watch while we did the exercises. He would lie on the floor and watch while I did the exercises to him passively. It was still uncomfortable and challenging. Reward charts would have made zero difference here, lol. 

18 hours ago, Quarter Note said:

We're testing with only doing the meds on school days.  So far this weekend has been okay.

That's interesting. My dd totally notices when she's off her meds. 

Edited January 11, 2021 by PeterPan

[Quarter Note]

Hi again.  Well, today was Day 4 on Adderall.  I don't see any improvement in focus, though my son says that he likes how he feels on the meds and wants to keep going.  Unfortunately, he's had three worse-than-usual meltdowns on the days when he has had meds, and we can't tell if it's coincidence or not.  We're willing to keep going, but it's been discouraging. 

@PeterPan, we'll be trying to get him back on his exercises, but it's definitely hard to think about taking on more battles.  I think he's probably mixed sensory.  He also has an ASD diagnosis.  

The website for Pyramid of Potential has been taken down. Do you know of anything similar?  If not, I'll just dig out the exercises that the PT/OT gave us and see if I can get him to try those again.

Many thanks for all the help and encouragement!

Edited January 13, 2021 by Quarter Note
to include the tag

[PeterPan]

55 minutes ago, Quarter Note said:

three worse-than-usual meltdowns

Are the meltdowns as the meds wear off? Are you doing a short acting med or time release? 

These meds are not a commitment, unless you're on an SSRI/SNRI, which he's not. (the non stim meds are) So you can stop taking the meds for a few days, resume, whatever you want. I'm not saying you should, only that you have that option. At the very least, you can call your doctor.

It is normal/common for there to be a *brief period* of say 30-45 minutes of *rebound* as the meds wear off. So if the behaviors are occurring during that time, it's not a shock. When are the behaviors occurring? Are you making data? You need to start behavior logging pronto. It will help you notice patterns you might miss otherwise. It's easy to be in the moment, but sometimes when you behavior log you see what's going on. 

Don't make it complicated. Put out a notebook and write stuff down. Write down the time, the ABC (antecedent, behavior, consequence). The quick book to learn how to do this is Stop that Seemingly Senseless Behavior. It's maybe $8 on amazon as digital and won't take you terribly long to read. But start immediately writing everything down. Time, what was happening behavior, what happened, how it was followed up. You can log good too! Just start logging and see what becomes obvious to you.

57 minutes ago, Quarter Note said:

He also has an ASD diagnosis.

So this is a situation where some people would want a pdoc to be prescribing the meds instead of a pediatrician. It's a more complex situation and our family doctor wouldn't touch it. Nuts, the pediatrician we had before that wouldn't touch meds on him. Once he realized that ds passed the Quotient (tap tap computer test) for attention but had behaviors, he was like nope, outta my league, here's a referral. 

One place to look for care for more complex situations is the behavioral health center of a major children's hospital. If there's a children's hospital in your state, that's what you're looking for. You can get a referral, do intake. Has he had ABA? I know people are sometimes aghast at ABA, but still getting someone to help you through the learning curve of stuff like behavior logging and self regulation can be really good. These behavioral health clinics bring a LOT OF RESOURCES AND SPECIALTIES under one roof. So it's a clearing house. Sometimes doesn't work, sometimes does. 

In other words, ask for help. Starting asking for help. Not only your ped but also referrals. 

1 hour ago, Quarter Note said:

The website for Pyramid of Potential has been taken down.

Oh wow, thanks for letting me know! That's literally just in the last couple days. Oh my. https://www.youtube.com/user/pyramidofpotential  Here's her youtube channel. You might write her through there and see if she's changing her business model and still has a way to make her videos available. They were literally like $35 for the download you're wanting. It's so recent, I think just write her and see. Also there's a phone number that pops up when you google her, so she might answer that. 

 

1 hour ago, Quarter Note said:

it's definitely hard to think about taking on more battles.

The stimulant meds are methyl donors, and increasing methyls will cause aggression in kids who have COMT and certain defects. So if he's having *aggression* that seems to be upticking with the meds, I'm with you and highly concerned. If he's having a brief *rebound* as the meds wear off, that's normal. 

I think the challenge is that everyone feels better on stimulants, lol. Like not to be trite, but seriously. ANYONE can feel better on a stimulant. There used to be this sort of false theory floated that if you did a stimulant med trial and felt better you were confirming the ADHD. What you could be confirming is he has an MTHFR defect. You could give him orange juice and see if that also makes him feel better. He could have mixed genetics. 

I'm not a doctor. I think behavior log, see what's going on, call your doctor, get a referral to someone who can spend the time it will take to sort it out. If you have genetics on him, you can run it through an engine like knowyourgenetics.com and see his methylation status. 

I'm sorry he's having trouble. Go with your gut, behavior log, and don't be afraid to ask for help. 

[PeterPan]

https://www.amazon.com/Stop-That-Seemingly-Senseless-Behavior/dp/1890627763/ref=sr_1_1?crid=114C34PI602X6&dchild=1&keywords=stop+that+seemingly+senseless+behavior&qid=1610513746&s=books&sprefix=stop+that+seem%2Caps%2C245&sr=1-1  Here's that book. You can get it as a kindle book and read it tonight. GREAT STUFF.

[kbutton]

19 hours ago, Quarter Note said:

Hi again.  Well, today was Day 4 on Adderall.  I don't see any improvement in focus, though my son says that he likes how he feels on the meds and wants to keep going.  Unfortunately, he's had three worse-than-usual meltdowns on the days when he has had meds, and we can't tell if it's coincidence or not.  We're willing to keep going, but it's been discouraging.

So, this is what happened to us with methylphenidate and lower doses...the low dose was enough to make my son aware of his issues, but not enough to help him FIX his issues. That's precisely when we know he needed a dosage change. I think this can be a problem regardless of the class of meds. 

The child this happened with has ASD and ADHD like yours. We did have the major sensory stuff tapped down to a tiny problem by the time we did meds though.

[Quarter Note]

On 1/12/2021 at 9:55 PM, PeterPan said:

behavior log

Oh, we've been logging his behavior for years!  This isn't the start of our journey with his behavior, it's just when we added meds. 

I have plenty of practice with his rages, but they have definitely been more aggressive in the last few days, unfortunately.  For his privacy, I won't give any details on what he's done in the last few days, but we've decided to stop the meds until we can get back into the pediatrician's office.  Hopefully the doc will try something else.  

I'm encouraged by so many people here who have had good results with different kinds of meds.  We won't give up!

 

[Quarter Note]

15 hours ago, kbutton said:

So, this is what happened to us with methylphenidate and lower doses...the low dose was enough to make my son aware of his issues, but not enough to help him FIX his issues. That's precisely when we know he needed a dosage change. I think this can be a problem regardless of the class of meds. 

The child this happened with has ASD and ADHD like yours. We did have the major sensory stuff tapped down to a tiny problem by the time we did meds though.

Thanks for letting me know, kbutton!  This is really encouraging.    

[PeterPan]

11 hours ago, Quarter Note said:

Hopefully the doc will try something else.  

Problem is both stimulant med types are methyl donors. If he was having aggressive behaviors before, he should not have been put on stimulant meds. You need to ask for a referral to a pdoc. I'm glad you were able to stop them and hope the behaviors return to baseline soon. 

My ds has had aggression and multiple docs refused stimulant meds on him. We're trying a pdoc next month. I've heard (haven't researched it yet honestly) that somehow Abilify manages to both stabilize mood AND improve attention. I have no clue, just saying that's what someone told me. If it's half true, I'd take it. But that's not the kind of stuff a ped or family practice GP wants to be prescribing on their own, kwim? Our family doc is great, but he's like get the pdoc on board. And other people with that ADHD plus ASD combo have said the same thing. Get a pdoc, work with them to get him stabilized, then let the family doc do the refills. 

I think this is going to be an expensive year for us, sigh. Pdoc, orthodontics, feeding therapy, and more. Oh and an IEP fight. Ugh, ugh, ugh. I'm trying to enjoy my last few days before it all swings in. I've got to think up some GRAND PRIZE for myself at the end of these things, because I don't know I may deserve it. Trying not to think about it. The evals we got today were groteque, totally new things we haven't worked on. I mean seriously.

That was nothing, just a ramble. But yeah, glad you got off the meds, hope you can go up the food chain to get something that will work better.

[Quarter Note]

11 hours ago, PeterPan said:

Problem is both stimulant med types are methyl donors. If he was having aggressive behaviors before, he should not have been put on stimulant meds. You need to ask for a referral to a pdoc. I'm glad you were able to stop them and hope the behaviors return to baseline soon. 

My ds has had aggression and multiple docs refused stimulant meds on him. We're trying a pdoc next month. I've heard (haven't researched it yet honestly) that somehow Abilify manages to both stabilize mood AND improve attention. I have no clue, just saying that's what someone told me. If it's half true, I'd take it. But that's not the kind of stuff a ped or family practice GP wants to be prescribing on their own, kwim? Our family doc is great, but he's like get the pdoc on board. And other people with that ADHD plus ASD combo have said the same thing. Get a pdoc, work with them to get him stabilized, then let the family doc do the refills. 

I think this is going to be an expensive year for us, sigh. Pdoc, orthodontics, feeding therapy, and more. Oh and an IEP fight. Ugh, ugh, ugh. I'm trying to enjoy my last few days before it all swings in. I've got to think up some GRAND PRIZE for myself at the end of these things, because I don't know I may deserve it. Trying not to think about it. The evals we got today were groteque, totally new things we haven't worked on. I mean seriously.

That was nothing, just a ramble. But yeah, glad you got off the meds, hope you can go up the food chain to get something that will work better.

Thanks, PeterPan!  I'll go up the food chain.  Yesterday, we didn't give him the Adderall, we just went back to one cup of tea (which we weren't doing when he was taking the meds), and there weren't any meltdowns.  He seemed happier.  The kid can't keep on task for more than half a second, but at least there was no aggression.  It's funny, when I started this thread, extra aggression was not the side effect I was concerned with.  I was really most concerned about the growth retardation.  But this is what happened.

Just to let you know, I poked around on the internet a while and found a different source for the Pyramid of Potential CD, so as soon as that arrives, we'll be starting that.  And, since you mentioned it on a different thread, I'm going to sign up for that Interoception webinar.  We're not giving up on my sweet son!  And I'll update when there's anything new.

Best wishes to you, too, PeterPan!  Please know that you have my encouragement for all that's going on with your own son.  I hope that the results of the new evals feel more manageable today.

[PeterPan]

1 hour ago, Quarter Note said:

we just went back to one cup of tea (which we weren't doing when he was taking the meds), and there weren't any meltdowns.  He seemed happier.  The kid can't keep on task for more than half a second, but at least there was no aggression.  It's funny, when I started this thread, extra aggression was not the side effect I was concerned with.  

That's interesting that the effect is stronger with the med. The tea also has caffeine/methyls. Your ds may have mixed genes for methylation. 

 

[PeterPan]

1 hour ago, Quarter Note said:

Just to let you know, I poked around on the internet a while and found a different source for the Pyramid of Potential CD, so as soon as that arrives, we'll be starting that.  And, since you mentioned it on a different thread, I'm going to sign up for that Interoception webinar.  We're not giving up on my sweet son!  And I'll update when there's anything new.

Oh good!!! Getting reflexes integrated can be HUGE! And working on the interoception is so pivotal to help HIM self advocate for his mental health. In the ps they use Zones of Regulation, which you can look into if you want. (I've done the training, it's fine, good.) Thing is, it really relies on the assumption that the person has self awareness to realize what zone they're in! That's not necessarily going to be there with ASD and many other situations. So getting that self awareness piece lets the person self advocate. Nuts, it's how we realized ds had a problem in his mouth, because he was finally able to tell us how often he's hungry so we could investigate why, lol. 

None of these are replacements for meds and chemistry. It's more that they work together. Our behaviorist put it that the meds will let him use the good teaching he's had. The pieces come together. 

Edited January 15, 2021 by PeterPan

[kbutton]

My son didn't have aggression exactly, but he was rough, and if he was disregulated, he would slam himself into the wall, etc. He would go into fight or flight if approached from behind or the side, especially if he was in a noisy and/or demanding environment. That melted away with OT work. He didn't test as having retained reflexes, so I think he was almost integrated but not quite (he'd done vision therapy first for convergence, and that was amazing--no direct reflex work for him because he didn't show anything obvious, but lots of body work that made a big difference). The OT did a combination of a brushing protocol and some heavy work/deep pressure/spinning. It took her several sessions to find the right combo, and the brushing drove him batty until it suddenly didn't. It was a very prescribed protocol, not something to wing it with at home. Same for the spinning and heavy work. We used an OT that has a reputation for being good with sensory issues and who had a lot of experience.

We did all that prior to meds, I believe. The OT and meds might've been overlapping.

I would not conclude anything about methylation without genetics. The information is good, but it's guessing until you have facts to go with it. Also, I believe that some people still have to use a lot of trial and error with supplements, etc. once they know their genetics.

I would do OT or whatever you need to work on reflexes, and then try again. It's worth trying more than one class, or even doing a genetic test designed to see which ADHD meds are likely to work best. Those tests are available as well. They aren't 100 percent, but they can prioritize what to try.

I would not assume meds are always going to foster aggression. 

[PeterPan]

There are studies on stimulant meds with bipolar, what it takes. 

[Quarter Note]

On 1/15/2021 at 8:43 AM, kbutton said:

My son didn't have aggression exactly, but he was rough, and if he was disregulated, he would slam himself into the wall, etc. He would go into fight or flight if approached from behind or the side, especially if he was in a noisy and/or demanding environment. That melted away with OT work. He didn't test as having retained reflexes, so I think he was almost integrated but not quite (he'd done vision therapy first for convergence, and that was amazing--no direct reflex work for him because he didn't show anything obvious, but lots of body work that made a big difference). The OT did a combination of a brushing protocol and some heavy work/deep pressure/spinning. It took her several sessions to find the right combo, and the brushing drove him batty until it suddenly didn't. It was a very prescribed protocol, not something to wing it with at home. Same for the spinning and heavy work. We used an OT that has a reputation for being good with sensory issues and who had a lot of experience.

We did all that prior to meds, I believe. The OT and meds might've been overlapping.

I would not conclude anything about methylation without genetics. The information is good, but it's guessing until you have facts to go with it. Also, I believe that some people still have to use a lot of trial and error with supplements, etc. once they know their genetics.

I would do OT or whatever you need to work on reflexes, and then try again. It's worth trying more than one class, or even doing a genetic test designed to see which ADHD meds are likely to work best. Those tests are available as well. They aren't 100 percent, but they can prioritize what to try.

I would not assume meds are always going to foster aggression. 

Your OT sounds wonderful, Kbutton.  I wish we could get someone like that around here...

We will definitely try another med.  We're just putting the Adderall away until we can talk to the doctor.  I do hope we can try something else soon.

 

[Quarter Note]

23 hours ago, PeterPan said:

There are studies on stimulant meds with bipolar, what it takes. 

I had been wondering if that might be our son's issue, but the neuropsychologist was fairly confident that wasn't the case.  At least that's one thing we can check off!

Another two data points:  Yesterday was another day without Adderall but with a cup of tea, and, though he had his usual grouchy moments, he didn't have a meltdown.  This morning we forgot to give him his tea, and he had a meltdown before lunch.  We sure made him drink his cup of tea after that!  There's something that's going on in that brain of his that's responding to the caffeine, but the Adderall was just too much.  We just need to figure out what it is.  Thank you, as always, for your help!

[PeterPan]

4 hours ago, Quarter Note said:

Yesterday was another day without Adderall but with a cup of tea, and, though he had his usual grouchy moments, he didn't have a meltdown.  This morning we forgot to give him his tea, and he had a meltdown before lunch.  We sure made him drink his cup of tea after that!  There's something that's going on in that brain of his that's responding to the caffeine, but the Adderall was just too much.

The amount of caffeine is high enough in what you're giving him that he's becoming dependent. He could have a headache (from the withdrawal) and so he's having behaviors. 

 

[PeterPan]

4 hours ago, Quarter Note said:

I had been wondering if that might be our son's issue, but the neuropsychologist was fairly confident that wasn't the case.

Read about it anyway. The issues with the methyls are the same whether they call it bipolar or not. 

[Storygirl]

When DS16 first started on medication for his ADHD, it took trying several different medications at a variety of doses before we found what worked for him. For what it's worth (because everyone is different, so it may not be the same for your son), Adderall made DS aggressive -- not physically but verbally angry. So the pediatrician tried other things, until we found what worked for him. You can call your doctor and ask him or her what to do. For awhile, our doctor did phone calls with us and would call the new prescription in, so we didn't have to go to the office over and over again. Ritalin, Focalin, and Concerta have all worked for DS, whereas Adderall and Guanfacine (this would be brand name Intuiv; we didn't try the brand name) did not.

So there are quite a few other ADHD meds that you could try, before going up to another category of medication.

FWIW, DS also has ASD, and his medications were prescribed by his pediatricians for years. We did eventually switch to a psychiatric nurse practitioner, and it's been a good switch for us. But the two pediatricians that have prescribed things for us have been really good with the ADHD medications. Some pediatricians are comfortable with and good at it, and some are not.

Edited January 17, 2021 by Storygirl

[Storygirl]

Oh, I agree with Peter Pan about a kind of rebound of behaviors later in the day, when the meds wear off. DS16 has a second small dose to take after school, to cover the hours when his main dose is wearing off. This is not uncommon, and you can discuss it with your doctor.

But if the behaviors are extreme and hard to handle, trying a different med is probably the first step. Then, after you have a med that works well, you can consider whether an afternoon dose might be helpful.

[Quarter Note]

22 hours ago, PeterPan said:

The amount of caffeine is high enough in what you're giving him that he's becoming dependent. He could have a headache (from the withdrawal) and so he's having behaviors. 

 

 

22 hours ago, PeterPan said:

Read about it anyway. The issues with the methyls are the same whether they call it bipolar or not. 

I'll ask about both of these at his appointment this coming week.  Thanks!

[Quarter Note]

20 hours ago, Storygirl said:

When DS16 first started on medication for his ADHD, it took trying several different medications at a variety of doses before we found what worked for him. For what it's worth (because everyone is different, so it may not be the same for your son), Adderall made DS aggressive -- not physically but verbally angry. So the pediatrician tried other things, until we found what worked for him. You can call your doctor and ask him or her what to do. For awhile, our doctor did phone calls with us and would call the new prescription in, so we didn't have to go to the office over and over again. Ritalin, Focalin, and Concerta have all worked for DS, whereas Adderall and Guanfacine (this would be brand name Intuiv; we didn't try the brand name) did not.

So there are quite a few other ADHD meds that you could try, before going up to another category of medication.

FWIW, DS also has ASD, and his medications were prescribed by his pediatricians for years. We did eventually switch to a psychiatric nurse practitioner, and it's been a good switch for us. But the two pediatricians that have prescribed things for us have been really good with the ADHD medications. Some pediatricians are comfortable with and good at it, and some are not.

 

20 hours ago, Storygirl said:

Oh, I agree with Peter Pan about a kind of rebound of behaviors later in the day, when the meds wear off. DS16 has a second small dose to take after school, to cover the hours when his main dose is wearing off. This is not uncommon, and you can discuss it with your doctor.

But if the behaviors are extreme and hard to handle, trying a different med is probably the first step. Then, after you have a med that works well, you can consider whether an afternoon dose might be helpful.

Thank you so much for jumping in with your experience, Storygirl!  I really appreciate all of you who have been encouraging me not to give up.  I'm hoping that this coming week we can get a trial on a different med.  The poor kid desperately needs something.  

[prairiewindmomma]

On 1/6/2021 at 6:36 AM, SanDiegoMom said:

My daughter did badly on Adderall (only took it one day) but did better on Ritalin.  She's doing the best on Vyvanse, which is I guess chemically related to Adderall.  But she is 21 now, so I can't speak to the younger years. 

For her with all the short acting meds the thing to look out for is eating enough (she didn't eat enough and that created its own anxiety problems) and night time anxiety when coming off the meds.  But as the parent you can watch and control most of those.  My daughter was off at college and is a very unreliable narrator.  She kept not eating, having more trouble focusing, asking for an increase in dose (and getting it, no question! What the heck?) then eating and sleeping less, having worse and worse anxiety.... what fun! 

 

This has been our experience. We tried switching back because vyvanse is so expensive, but it did not go well. Vyvanse is so much better.

[Quarter Note]

On 1/20/2021 at 6:16 PM, prairiewindmomma said:

This has been our experience. We tried switching back because vyvanse is so expensive, but it did not go well. Vyvanse is so much better.

Thank you, Prairiewindmomma!  I really appreciate all the feedback we've been getting.  It is very encouraging to know that there are so many options.  We're not giving up just because the first didn't work.