ADHD and if/when to medicate

[borninthesouth]

I have recently had to make decisions about whether or not to give my kids medication.  It is such a difficult and personal decision, but I do like to hear feedback from other moms about what they have done and why.  I have an 8 year old child that is very bright.  Her reading and math are above grade level and she loves read alouds and retains much of what we listen too.  The problem is she really struggles focusing.  I have to bring her back to task every 2-3 minutes.  When we read together she gets what she is reading, but she will miss words, rename words (and for to, here for there-- stuff that usually doesn't change the meaning too much) and generally just read too fast and miss some of the content.  I have to slow her down and reread many sentences.  Her piano teacher says that she knows she is capable of playing the music, but she has to re-direct her constantly.  So, my thought is she is just a wiggly, busy and somewhat ADHD kid that needs to learn focus... She really does run from one activity to the next.  And you have to sometimes look at her holding her arms down to make her listen and understand.  Do I consider meds?  I really haven't up until this point.  I just let her go and focus her when we need to focus.  Having said that it is exhausting sometimes to constantly re-focus her attention.  Anyone out there have any insight?

[OneStepAtATime]

Have you actually had an evaluation?  Have you talked to the pediatrician?  If not, I would start there, before worrying about meds.  Meds may definitely help but I think it can help to better understand the child overall before trying medication.  Maybe try to get a full neuropsych evaluation.  There can be a long wait time to get in so I would start pursuing this right away.  You can always cancel if it seems unnecessary further down the road.  Think about whether to medicate or not once you have a fuller picture.

[shinyhappypeople]

Has she actually been diagnosed with ADHD or do you just suspect ADHD?  The way you phrased it made it unclear to me ("My thought is she is just wiggly and somewhat ADHD.")  

 

What does her doctor recommend?  

 

Younger DD was recently diagnosed and older DD is next on the list to be evaluated (if anyone's keeping count, that makes three of us.  My poor husband.)  

 

Anyway, we have an appointment with a child psychiatrist this month to discuss medication.  It's a big decision.  We'll probably try it and see if it helps.  The worst that can happen is that it won't help or she'll hate the effects so much that we stop using it and continue looking for other ways to deal.  It's not like we're making a decision that we have to stick with until the end of time.

[OneStepAtATime]

Another thing to keep in mind, OP, is that it may take quite a bit of time, even if you do end up trying out medications, to find the right medication and the right dosage.  It is not a cut and dried process.  Just wanted you mentally prepared for a lot of trial and error.

[kbutton]

I would get a firm diagnosis before deciding anything. I am very happy we've tried meds. It's been an overwhelmingly helpful change here.

[EKS]

Before medicating, I'd get her evaluated.  If that seems like overkill, she probably doesn't need meds.

 

Sometimes a pediatrician will suggest a medication trial as a way to "diagnose" ADHD.  The problem with that is that stimulants help everyone to focus, not just folks with ADHD.

 

That said, we found that a protein breakfast works wonders.  The change was as dramatic as the one we saw with meds--but without the side effects.

 

Also, is it possible that she is bored?  Try upping the challenge/interest level and see if she is more able to sustain attention.

[PeterPan]

Before medicating, I'd get her evaluated.  If that seems like overkill, she probably doesn't need meds.

 

Sometimes a pediatrician will suggest a medication trial as a way to "diagnose" ADHD.  The problem with that is that stimulants help everyone to focus, not just folks with ADHD.

 

That said, we found that a protein breakfast works wonders.  The change was as dramatic as the one we saw with meds--but without the side effects.

 

Also, is it possible that she is bored?  Try upping the challenge/interest level and see if she is more able to sustain attention.

 

Everybody mentioned great things, but I wanted to pull this down for emphasis. 

 

As far as evals, something you could do today, this weekend, is google for youtube videos on checking for retained reflexes. You've got a significant amount there that is her body in motion, her body having a hard time being calm, and that can be retained reflexes. It would be good to at least explore that.

 

I agree that you would benefit from a full psych eval. In that you're going to learn how she processes, find out things that aren't on your radar right now (executive function, processing speed, working memory, etc.). If you go for a longer eval, like with a neuropsych, they might run some language testing. I'd want to make sure there aren't some other reasons why she's having a hard time with those read alouds. Some kids will have some APD issues going along with the ADHD. I think you might not have a FULL explanation for what is going on. ADHD is a really vague, cloud sort of diagnosis, and it's easy to pawn off to that things that are actually stuff you could DO something about.

 

When you've got significant enough issues that you're having to RESTRAIN her, physically restrain her, to get her to do her work, it's time for evals. My ds was like that, and he ended up getting an autism diagnosis. Without evals, you don't have enough explanation for what you're seeing. And, fwiw, my ds, who was every bit as astonishing as yours, now doesn't qualify for ADHD meds at all, ped wouldn't give them to him. He had significant retained reflexes, and he had issues with social thinking (body in the group, etc.).

 

I agree with the line of questioning about her being bored. That's another area where psych testing could help you. Regular standardized testing is pretty limited and has a ceiling. It only tells you how they perform compared to other students on that test. The achievement testing a psych (or other professionals) can do has no ceiling and can tell you actual grade levels. So you could find out if she's 2 grade levels ahead on reading or 4-5. 

 

An OT eval would tell you if she's having midline issues affecting what seems like attention issues with the piano. Remember, ADHD isn't merely inattention. Sometimes they actually have really good attention! It's about misplaced attention and difficulty holding attention even when they WANT to. So they intriguing thing to ponder is when does she WANT to attend, and how does it go when she WANTS to attend? 

[PeterPan]

As far as my line on meds and when and why, my first thing is SAFETY. Is she safe? Is she so impulsive that she needs the help to be safe, to stay in the group, to follow instructions in common situations where she is a danger to herself? No matter what, if safety is an issue, I would be all over meds and sooner rather than later. I'd want the psych eval, but I'm just saying I, as someone who is really of the "let's see if we can make this work other ways as long as we can" camp, have ABSOLUTELY NO issues with meds for safety. Safety first.

 

Now a pediatrician will then ask if it's impeding her ability to learn. That's a really good question. You don't REALLY know where she's at till you get some open-ended, no ceiling achievement testing with a psych or other professional. My dd was like that, always working many, many grade levels ahead in spite of really wicked, make your head spin ADHD. Then it's really a judgment call of when to do it. There does come a point, even with those kids, where they really can't cover it anymore, where their strengths can't make up for it. And also you've got the issue, as grade levels increase, of the workload, the expectations, of how much you can modify. If it's straight inattention, not a pile on of other issues (many of which might have their own interventions), then for some kids you really can go a while by modifying. There are all kinds of strategies with timers, rewards, short sessions, physical breaks, doing more with sports, etc.

 

I think the thing that rattles me is your use of restraint. They did this with my ds in speech therapy through age 7, and I can tell you it did NOTHING for his self-regulation and social thinking. We had to take off speech therapy completely, do ABA, and reset that. He needed significant social thinking instruction (love We Thinkers!!!) to help him understand things better. And even when they understand it, some kids still are going to have a hard time with body in the group. Some kids are really just going to get there better with meds. Sometimes meds plus social thinking materials can be very WOW.

 

So safety, reaching a point where it can't be worked with adequately even with their strengths and dramatic modifications, and then enabling them to bring into reach skills that they're being taught but that they just CAN'T GET their bodies to do. These are all really good jump points where you go ok, it's time, let's do this.

 

That tells you there's a lot you can do BEFORE, kwim? And you can do stuff concurrently. Like you can go to the ped, get the referral to the psych (for insurance coverage), get the OT eval, work on retained reflexes, remove food coloring and morning junk food from her diet, increase structure, etc. etc. Around here, it takes several months to see the ped, do the tap tap computer testing the ped wants, get another appt for the meds, etc. That gives you time to go to the psych, get an OT eval, etc. etc. and work on things.

 

Ancillary things to check? Vision, hearing...

[Ottakee]

Lots of good points here.  We did lots of the above suggestions and went with meds.  It has made a HUGE HUGE HUGE difference.  Little to no side effects but huge benefit.

[caedmyn]

My 8 YO sounds just like that.  I want to bang my head against the wall every time I have to do a reading lesson with him (he has dyslexia also).  Sometimes I think I would love to try meds with him, but he is not formally diagnosed and probably never will be as DH doesn't believe in ADHD or meds.  

 

My other though, even if meds were a possibility for him, is that a non-pharma-funded longitudinal study showed that long-term, meds don't help kids.  They help for a year or a little more, but after that the kids that are on meds do not do better than kids that are not on meds.  So that makes me wonder if it's really worth it overall to deal with all the potential side effects and all the unknowns of possible long-term negative effects of the meds.

[Hypatia.]

I've got one that is doing fine without meds, and another where meds were absolutely the right choice. For the one that didn't need meds, he was progressing fine with his schooling, it wasn't interfering with his safety or the safety of others, and we could find enough ways to accommodate him (mini-trampoline, wobble seats, exercise balls) where he could channel his energy and focus long enough to get things done.

 

And my other one, well it quickly became obvious. He was a danger to himself, to others, was breaking property, and nearly tore the family apart. Even my DH, who has always been adamantly against meds (even though I'm medicated for it myself), changed his mind. I had doubts because of his age, but in this case it was so far beyond the "oh, he's just a wiggly little boy" objections that it wasn't even in the same ball park. Heck, not even sure if it was the same planet.

[PeterPan]

My 8 YO sounds just like that.  I want to bang my head against the wall every time I have to do a reading lesson with him (he has dyslexia also).  Sometimes I think I would love to try meds with him, but he is not formally diagnosed and probably never will be as DH doesn't believe in ADHD or meds.  

 

My other though, even if meds were a possibility for him, is that a non-pharma-funded longitudinal study showed that long-term, meds don't help kids.  They help for a year or a little more, but after that the kids that are on meds do not do better than kids that are not on meds.  So that makes me wonder if it's really worth it overall to deal with all the potential side effects and all the unknowns of possible long-term negative effects of the meds.

 

The op can google and find those studies, but I think usually when they do those they're saying that *over a population* the meds don't affect the long-term test scores. That's really a far cry from saying what it will do on an individual level. For a single person, they could be the difference between reading and not reading. They could be the difference between barely getting into college (or not even being able to go to college) and a HUGE SCHOLARSHIP. 

 

So it's really not reasonable to underestimate the potential positive effect of meds on the individual level. There's more to consider than test scores of a population. 

 

To me what it means is there are lots of valid paths. You could choose not to give meds or choose to give meds. Either way, your kid hopefully lives. If they drive and have an accident that kills maims them, then take that back, they don't live. When my dd was preparing to drive, this was ON OUR MINDS. Choices aren't always equal. The stats for driving accidents for unmedicated ADHD are VERY HIGH.

 

And you know, like I said, I'm really in the let's modify, let's hold out, there's a lot you can do camp! I've got a LONG track record of that here on the boards and have been pretty outspoken about it. I've just seen the same, unreasonable manipulation with stats on late talkers, where they're like oh don't intervene because *over a population* it usually works out. Well that's fine, but I didn't make my ds' decision for speech therapy based on a population. I didn't have to decide social policy or funding/intervention practices for a school. I had to decide for ONE PERSON, the most important person, my child. And when it boiled down to it, on an individual level, I had to give him the best chance. I wasn't gonna do some kind of idiotic crap shoot roll and deny him intervention based on some mathematician's theory.

 

And ironically, in the case of my ds, it turns out I was right. I was right because they were willing to lump too many types of causes and cases together when they made their stats. So they'd lump together apraxia (a motor planning issue) and developmental delays and autism and all sorts of different causes, call them all "late talkers" and generate some stats. Well the stats on apraxia with with no intervention? Not pretty. So going with the stats some idiot researcher was willing to publish in a book would have done my particular dc no good on the individual level.

 

That was a rant. And, fwiw, I actually thought about that data on the long-term outcomes of meds vs. no meds a LOT over the last two years while working with my ds. I had people walking up to me asking why I didn't have him on meds. I had two diagnoses. For him, my decision to wait was based on the basics I mentioned earlier:

 

-he was not a danger to himself. This got pushed with the idea of danger to others. That was what put it on the line.

-he was progressing academically and we were able to do enough together that we didn't feel it was the cause of academic issues.

-he seemed to be applying the social thinking concepts to life 

 

Any of those would have pushed me over to meds, and we had an exceptionally short leash there. I was constantly talking with his ped while we tried things. By the time we got through our list of things (reflexes, social thinking, etc. etc.), he was testing has having terrific attention and normal range impulsivity for a boy. Can't ask for more than that. He's a boy, a pagan (no offense meant to pagans), and a pain in the butt with significant social thinking deficits. That doesn't mean he needs meds for ADHD. 

 

But I do actually agree with you that it's really cautionary to think about that, that for a segment of kids it just is how it is, they're going to be who they are. For some kids, however, those meds really make an ASTONISHING difference. I also think those studies were done on schools, which have intractable systems. Imagine the pairing of meds with the flexibility of methods in homeschooling. Maybe that's why the astonishing stories we're hearing are in HOMESCHOOLS. When you can teach to their best paths for learning AND get their bodies tamed, that's pretty powerful. But yeah, use the same old, ho hum methodologies of the ps and put them on medications so they can sit through it, no shock that the results aren't astonishing.

Edited June 30, 2017 by OhElizabeth

[PeterPan]

The other thing the op can do is consider a very *low dose* trial of caffeine. It's NOT going to be the same, really not, but if you can get straight caffeine into him at the correct, quite low dose, it gives you a way to see a bit of what it would be like with meds. There are charts you can google for. If you do it and the caffeine source is too high, wrong effect. If you do it and it includes sugar, same gig. Just google caffeine dose ADHD, something like that. I think it was .1mg per kg of bodyweight, something like that. Don't hold me to that. It's just something I read and it was something we tried. It let us see enough that we felt pretty confident that anything in that direction was a good thing.

[Beaniemom]

I will share our story fwiw. My ds went through a neuropsych eval in a special clinic that treats deaf children. They helped us understand what was deafness realted, what was adhd, so forth. We started with behavioral therapy to learn strategies to help all of us. During this we also elected to try medication. In our situation, our thinking was along the lines of if we can take one difficulty off his shoulders it will be worth it. He started on a very, very low dose of medication and it was short acting in order to not supress his appetite at meal times. We have since gone up in dosage and added another to help transition and it has made a huge difference. Ds is able to be present and interact more and his confidence has improved. We are less that 6 months into the medication though so it remains to be seen what the future holds.

[EKS]

The other thing the op can do is consider a very *low dose* trial of caffeine. It's NOT going to be the same, really not, but if you can get straight caffeine into him at the correct, quite low dose, it gives you a way to see a bit of what it would be like with meds. There are charts you can google for. If you do it and the caffeine source is too high, wrong effect. If you do it and it includes sugar, same gig. Just google caffeine dose ADHD, something like that. I think it was .1mg per kg of bodyweight, something like that. Don't hold me to that. It's just something I read and it was something we tried. It let us see enough that we felt pretty confident that anything in that direction was a good thing.

 

My son (21yo) now self medicates with caffeine.  He says it's not as good as Adderall, but he really hated how Adderall (and all the others he tried) made him feel, so he's making it work.

[IvyInFlorida]

This is a subject dear to my heart right now.  We have recently made the decision to medicate my almost 8 year old son.  This is huge because one of the reasons westarted homeschooling was to avoid it.  Heck, we moved to the country, installed a trampoline, playground, and pool (on a tiny tiny income), have a very structured home routine even on daddy's days off, and we restrict the whole family's diet in certain ways, all to avoid medication.  I thought it would feel like failure to go this route, but actually all I feel is hope.

 

The big thing for us is the lack of impulse control.  Yes, he needs constant redirection during lessons.  Yes, he is utterly dependent during school time.  Yes, he cannot sit still or modulate his voice to save his life.  All these things are frustrating for me, the parent.  But it is the impulse control thing that is really threatening to ruin our family.  When your kid looks at you and you see he is aware that he is doing something or saying something he shouldn't but literally cannot control his impulses, you know you need help.  If your interactions with him are 90% negative ("stop tormenting your brother," "stop jumping off the table," etc) and he begins to see you as the enemy rather than the ally, you need help.  The stress level in our home is enormous.  I feel like we are at terror alert level red and seriously, I need to remember what yellow feels like.  His neurologist appointment is soon and I am hopeful medication will help us all!

 

Someone mentioned dyslexia upthread--he's got that too, and dang, it's not like ADHD makes it any easier.  How can a kid with dyslexia succeed when he has trouble focusing all the way through sounding out a word, right? 

 

Finally, something my friend said to me last night really helped.  She said, look, you provide a home environment with structure, routine, healthy parenting, tons of outdoor exercise, supportive tutoring, healthy food, lots of sleep.  And still he's struggling.  It's no failure to need help!  That put it into perspective for me big time.

 

Good luck with your decision!  It's a hard one to make and all you can do is be convinced in your own mind that you are doing what is best for you and the family.

[PeterPan]

Ivy, have you worked with a behaviorist? When my ds was that age the OT used this with him https://www.alertprogram.com  It's not a substitute for meds, but it would be a complement and something you could start now. You don't even have to buy it at all. It's just a concept. You can just talk about turtle speed and rabbit speed and what speed you're running and times when it would be nice to use his rabbit speed and times when it would be preferable to slow down and use his turtle speed. You can do a morning check in (a la Zones of Regulation) and ask what speed he is and let him put up his turtle token or rabbit token with a magnet.

 

You're always trying to increase his self-awareness. This is totally fair game, even when you're using meds! You can also get the Sitting Like a Frog tracks for free online Sitting Still Like a Frog - Shambhala Publications and same gig, this is stuff you can start for free NOW, that will make a difference right away! Anything for mindfulness (slowing down, feeling his body, noticing how he feels, being in the moment and really feeling it), even done just a short period of time (5-10 minutes) can give a significant bump in EF (executive function). So you're talking literally a 30% bump in EF just by playing a track from that cd every night! And the pieces add up.

 

 

[IvyInFlorida]

OhElizabeth, thanks for the recommendation!  I will look into these.  I definitely see improvement as I work with him on self-awareness of his outbursts so I will check it out!

[Ottakee]

 

Finally, something my friend said to me last night really helped.  She said, look, you provide a home environment with structure, routine, healthy parenting, tons of outdoor exercise, supportive tutoring, healthy food, lots of sleep.  And still he's struggling.  It's no failure to need help!  That put it into perspective for me big time.

 

Good luck with your decision!  It's a hard one to make and all you can do is be convinced in your own mind that you are doing what is best for you and the family.

I see using meds as a tool.....just like glasses.  For some kids they are needed and are extremely helpful.  Just like glasses won't help if the problem is a hearing loss, meds aren't a cure all but if ADHD is a problem, the difference can be amazing.

 

I remember one little boy I taught in 2nd grade.  He started meds and his learning skyrocketed, he was happier, getting along better on the playground and with peers, overall interactions were much better.  Parents stopped meds and sadly we watched him struggle again in so many area.

 

Don't feel bad about starting meds.  Most are short acting and within a few days (or sometimes hours) you can see if they will be effective.  It can take some trial and error to find the right med at the right dose but things can be so much better.