Episode 86 – What the World’s Biggest ADHD Meds Study Really Revealed

Jane McFadden:

Hello and welcome to ADHD Mums. Today we have a really exciting topic which is the world’s biggest ADHD study has come out, the evidence is here, what does it say and what does it mean for us? Here we go. One of the biggest issues that I see for ADHD mums is some of the real overthinking around medicating our children.

Now you might be somebody that reads, double checks all the prescriptions, researches it beyond, beyond, beyond, talks to the paed, overthinks it, wonders, stresses and then you watch your child breathing after day two of a new medication. The stakes feel that high and sometimes when I’m sitting in a room with a paediatrician and they’re making a suggestion, I really just wonder in my head how deeply they’re really thinking about it because it’s just like another appointment for them but for us it’s everything, it’s our child and if we get that medication wrong we could have two, three, six months of a really dysregulated child, a really unhappy child that not only we have to parent but also that our child is really unhappy.

ADHD medication feels like a huge leap a lot of the time and sometimes it doesn’t even feel right because we overthink it so much, we wonder and it does feel weird to hand your seven-year-old child a tiny tablet every morning and just trust it’s the right thing. These meds might be helping your child function, it might be helping them stay regulated but what if it’s also doing something that we can’t see, what if it’s developmental, what if it’s a bad day and then you’re just questioning over and over again whether you’re doing the right thing. Sometimes in the beginning the side effects can be really difficult.

So if you’re someone who’s really second-guessed and worried about medicating your child, you’ve triple-checked it, you’ve checked their breathing directly after, you’ve wondered, you’ve felt guilty, you’ve hovered, you’ve waited, you’ve tracked all these symptoms, you’re just not sure and a lot of the time we don’t see the benefits straight up. So it’s really confusing and hard to know what to do and sometimes in those moments, even myself, I’ve thought, am I doing the right thing? Is this lazy parenting? That’s what society tells me.

Medicating an ADHD child is because they’re too hard, air-quoting, and I’m making life easier for myself, air-quoting, and it’s lazy parenting but it isn’t and I know that but in that moment I still felt, I still felt guilty. If you are somebody who wonders about medication, particularly for children, this is a great episode for you.

It really took me a long time to feel okay about medicating my children and particularly my husband really was against it initially and we went through a long emotional process where I researched and researched and we came back to the conclusion that we would see a paediatrician and we would get ADHD medication. If you’d like to understand how I went to make that decision, I’d love you to go back to my episode called From Skeptic to Advocate, which is an episode about that decision-making that I went on. It’s more about neuroplasticity and about the brain and children and how they develop.

If you’d like to understand that, please go back. That episode is in the show notes. This episode is all about the evidence that have just come out and it’s about medication and the study itself is really centered around children and adolescents. It’s a great study for us to look at. One question that I think nearly every ADHD mum has asked at some point and usually I ask myself in the middle of the night is, is this medication safe long-term? Am I doing the right thing for my child?

Now, you may not necessarily be anti-medication but you may just really love being informed. You’re just wanting to make the right decision and the fact that you’re listening to this episode and you’ve thought about it so much shows that you are already a great mum. Now, when you’re in the pediatrician appointment, you may have heard things like, oh, it’s just a bit of an elevated pulse or, oh, your child has just slightly low blood pressure, nothing to worry about. You might have heard all medications have side effects or, oh, there’s no real evidence of long-term harm.

But jeez, when I’m talking about medicating a child, I don’t think I want to hear a sentence like, there’s no real evidence of long-term harm. What does that mean? Does that mean there’s no evidence and there could be? Does that mean that it’s good for them? What does that mean? And sentences like that can really put people off. However, now this evidence and this science has come to light and this has really been a game changer.

For mums who have children who are suddenly anxious, sleep deprived, emotionally volatile, the reassurances from a pediatrician on that kind of thing just don’t really land. What I want to hear is I want to hear data. I want to see a research study and I want a pediatrician to say it is absolutely safe and that is what the research shows us. But this week we have got a little bit closer in that direction and if you can’t tell, I’m very excited.

There are some really big takeaways from this study and I’m going to let you know what they are. Now, where did this study come from? I’m going to put in the show notes a link to where it came from if you’d like to look it up. This is from Lancet Psychiatry. This study was pulled together from data from over 23,000 participants across 46 randomized controlled trials. Now, you may not be into science but let me just tell you it’s basically gold standard. It doesn’t get much more solid than that.

Sometimes in research what happens is that they don’t put it together particularly well from the beginning and so you can see holes in it. You can see there wasn’t really that many people in the study or for example, if you’re looking at trauma, were the people also autistic? How are you controlling the factors? Now, in this study they have done that and I can absolutely say this is a great, great study. It is both covered stimulant medication which like Ritalin or dexamphetamine, Vyvanse, Concerta but it’s also studied non-stimulants like Intuiv, Atomoxetine all of the really big medications are in this study but not only that 60% of these participants were children and adolescents.

So what that means is that we can absolutely apply this study to children. Sometimes a great study comes out but there’s no children in it so it’s like well that’s really great for adults but the research isn’t there yet for children. The research is here for They’ve also followed these outcomes over 12, 26 and 52 weeks so they’ve come and studied it over a whole year which is even better.

So key message is this study is awesome. It was really well done and it is absolutely, I believe, a study that we can trust. So what did they find? Well, what they found was that all ADHD medication stimulants and non-stimulants are all linked to a very small increase in blood pressure and heart rate.

Now a lot of the times in the past people, paediatricians, just generally people, have usually said things like stimulants affect blood pressure and heart rate but non-stimulants don’t. Now that’s really been kind of speculation because we haven’t really had a really big ADHD medication study to really fall back on. What this shows is that stimulants and non-stimulants actually create the same amount of blood pressure increase and heart rate. There’s actually no difference.

So sometimes a paediatrician or a psychiatrist might be a little bit standoffish around prescribing a stimulant medication. Now if you don’t know what the difference is between a stimulant and a non-stimulant medication, I have an episode for that too. That will be in the show notes. You can go back. It’s a very short one but it goes into how they’re different.

So you can go back there if you are unsure on stimulant and non-stimulant. However, the changes in the blood pressure and the heart rate were actually considered clinically insignificant. So basically that means that there was no huge change in blood pressure or heart rate. And Intuiv which is actually a blood pressure medication and also is a non-stimulant ADHD medication did lower blood pressure and pulse.

Now that’s not really surprising because it is a blood pressure medication. So I would actually be shocked if it didn’t lower the blood pressure and the pulse. And when you are getting a script for that, you absolutely do monitor that. So that really makes complete sense to me. So we’ve got the research findings.

What do we do with them and how is it relevant for you? Number one, biggest takeaway from this research study is to track beyond behaviour. So we want to keep a pulse or keep a finger on literally the vitals of our child. So I am probably a little bit overzealous and I understand that. And I bought a child blood pressure monitor for my home because all three of my children were on Intuiv which is the blood pressure medication which also helps with ADHD hyperactivity. So once my children were on that and I myself have low blood pressure, I immediately wanted to get my own blood pressure cuff. I bought my own blood pressure cuff and I monitored my children’s blood pressure initially.

You don’t have to do that but it is good to take them to the GP. The PE get regular reviews particularly if you’re seeing things like my child’s faint, they’re not feeling well and this has all changed since taking this particular medication. You also want to have a look and I know ADHD this makes it really hard but tracking is really important.

You really do want to track when your child is taking a new medication. Did they concentrate? How’s their body coping? How are they feeling? What is the feedback from the teacher? What is the afternoon crash like? What happens if I give them a top-up? What time do they go to sleep? Tracking all of that is so much more important than just kind of going up to the PE and going they’re having some trouble sleeping but you don’t really know what times, when they went to sleep, what else was going on. You really want to get that data.

Number two, we also really want to have a look at some of those things around the stimulants and sensory overload. So for example, Ritalin, Vyvanse, some of those stimulants they’re great when they’re working but also we need to have a look at some of those sensory loads that happen during that and then whether we’re looking at an autism diagnosis as well. So yes, the stimulants can help but we also want to have a look at and monitor the sensory load and what I mean by that is like noise sensitivity, tags on clothes, feeling really overwhelmed, emotional sensitivity.

So yes, the stimulants can work but what are we looking at as well and what is your child’s overall well-being like when they’re on that medication? Definitely that’s important and number three, I would also talk to the prescriber about asking the right questions. For example, can we do some baseline cardiovascular screening first? How often are we monitoring vitals? If I see this, should we adjust the dose? Are we going to trial an alternative? What are the alternatives?

So really getting the information from the study and then asking questions from there is really important. A good pediatrician has absolutely no problems being asked good questions. They probably enjoy it. So it really is that feeling of working as a team with your pediatrician and using the information that you have to ask more questions to get better care.

Number four, one of the only advantages to having ADHD as a mother is that you actually get to advocate and understand what the medication feels like. For example, if you have taken Vyvanse, you understand how it feels, how it feels in the crash. You may understand dexamphetamine, Ritalin. So we can really adjust our parenting around what we know our child’s going through.

If you are someone who has taken medication, take that as a win because you actually understand it. So if you felt the effects of these medications yourself, you start to really talk to your child because it may be that the medication does really work for you but you do find anxiety is an issue. So talking to your child about the medication that you take or you’ve tried and how it can feel is really important and bringing that lived experience to the prescriber and letting them know, yeah, I actually have the same issue.

I find that with sleep this is what happens to me and that might be why. So taking this information, understanding it and then applying it to your pediatrician appointment is important. So far that’s all been really reassuring but I want to be really honest about the study and I want to really pick it apart because I want to make sure I’m very thorough because these are our children, right? We don’t want to just leave things like, oh yeah, cool, meds are great for every child.

Let’s just go in a little bit deeper for a moment. So the study doesn’t yet show us what happens after a year. ADHD is lifelong. Most people are on medication for years. If you go back to that From Skeptic to Advocate medication episode I listed earlier, it talks about how the brain can heal or the brain can heal itself. There is neuroplasticity.

So you may, once your child’s prefrontal cortex has matured, which happens at different ages, particularly boys, take a lot longer for their prefrontal cortex to develop, which is why they kind of make those impulsive decisions a little bit longer. And for girls and women, our prefrontal cortex does mature earlier. So we kind of psychologically mature earlier. We are a little bit more likely to settle down. We may not be making those same risky, impulsive decisions for as long as men and boys.

So what we know is that people generally aren’t on medication for a long time. If you were diagnosed as an adult, you will have ADHD traits for your lifetime. You will not heal your brain if you started to take your medication as an adult. As a child, you might, but it is going to take as long as it will take for your child’s prefrontal cortex to develop. And every child’s prefrontal cortex develops at different times.

So we also need to be aware of that. So what this study doesn’t yet tell us is that what happens after a year. So we know that most people are on medication for years, not just one year. This study is only on one year. We just don’t have data longer than that, especially for women and children.

So whilst there was no long-term negative impacts over that year, we haven’t studied it any longer than that. But I’m hoping that this study will continue on. And also this study doesn’t look at what happens if your child has another health condition. So for example, let’s say your child has cerebral palsy, they have a heart murmur, anxiety, sleep struggles. There’s all these chronic health conditions that are happening and coming out right now. And you can see that a lot of the time, ADHD is accompanied by another condition.

So when we look at ADHD medication, yes, that is true in this research study. But if your child has other health condition, it hasn’t actually studied that. The other thing that we haven’t looked at is that real life often is quite chaotic. So, you know, sometimes we have a shortage of medication, for example. What happens then, which is what we’re struggling in Australia with at the moment. What happens to missed doses? What happens to puberty shifts? Hormones? What happens to stress?

What happens to school trauma? What happens to sleep deprivation? What happens to trauma? Now, those variables don’t exist in a randomized trial, but they do exist in your home. So that there is another thing that isn’t yet in this study. But we do know that studies aren’t perfect. But I just wanted to highlight those three areas have not been isolated in this particular study.

However, this study is still awesome and I absolutely take it seriously. But I do want to highlight those three things. Now, you might be thinking, I’m kind of bored. What does it mean for me? You’re just saying that ADHD medication is good. Great. Cool. Thanks for that. Well, what we really need to understand with this study is that clinical reassurance and a study doesn’t actually cancel out our lived experience.

So just because I’m listing out a study doesn’t mean that you should just feel completely at ease with ADHD medication, not think it through, not stress. It doesn’t mean you’re automatically going to sleep through the night. It doesn’t mean that your extended family members aren’t going to ask questions. It doesn’t mean the media are still not going to say, oh, ADHD isn’t real. It’s okay to still feel uneasy.

You may always want more data and I do. I see this study and I love it. I think it’s probably the best study I’ve ever seen on ADHD medication, but that doesn’t mean I’m not going to wake up at three o’clock in the morning and wonder. That doesn’t mean I’m not going to feel a sense of dread whenever I have to go to the pediatrician appointment and that’s okay.

And that doesn’t mean that if your GP or pediatrician says everything’s fine, that you just trust them without overthinking it. It’s always good to critically look at what you are putting into your child’s body and how they are. But the study also is very important and it really does help to counter some of the stigma, the fear, the hesitation, especially when some of the professionals themselves have got doubts.

The study also doesn’t replace your role as the advocate, as the data gatherer, as the parent who knows when something feels off. So at the same time, you absolutely want to be critically looking at your child whilst they’re medicated or just all the time. And it also doesn’t answer the bigger systemic questions that I’m still asking after reading this study, which is why are there no more studies into ADHD medication in pregnant women?

When is that happening? Because when ADHD is diagnosed earlier and women aren’t having to wait to become a mum and then get really overwhelmed, and they are going into pregnancy with ADHD diagnosed and already have prescription, and they get told various information from various professionals who really don’t know if ADHD medication is safe in pregnant women or not. Now, again, I have in the show notes a link to an amazing episode with Rodney White.

Now, Rodney White is the pharmacist in Australia who knows ADHD medication and pregnant women and breastfeeding women the best. He has never done a podcast interview and I chased that guy all over the place. I have got the only podcast interview with Rodney White. If you would like to listen to Rodney’s episode, it will be in the show notes. And it is about whether ADHD medication is safe in pregnant women.

Next, there is also no studies yet into long-term impacts, particularly with autistic and ADHD kids. I think this is a real research priority. We are also still really expected to manage side effects with trial and error. There really isn’t actual protocols yet in terms of managing side effects. It’s kind of like wait and see, trial and error, and we all share things in the community that help.

For example, if I had a dollar for every single post in the Facebook group about what happens when my child falls off a cliff after their stimulants finish up in the afternoon, they crash, this is what I’m seeing, what should I do, should I give them a top up, but then they can’t sleep, I would be absolutely loaded. So those side effects really were managing with trial and error.

We don’t have actual protocols yet. Depends what page you see, it depends what you see that works for your child, what information you have as to what you do. There’s also the question of medication breaks. Still, again, no research. So really, I do believe that whilst we have this study, that’s great, but I also think that we deserve a lot better than we’ll just monitor and see.

I think, I don’t really know, this is what kind of we’re getting from the research. I do think there’s a lot more work to be done and we really deserve better than just the one study. So I really am hoping that this study has more coming. The other thing I just want to quickly talk about is that clinical reassurance, the study doesn’t cancel out lived experience.

We are still going to feel uneasy. We’re still going to want to see more data. We are still going to want to track vitals. We also want to have a look at the overall well-being. So let’s say, for example, this clinical trial might have studied attention, impulsivity, and some of those really strong ADHD traits. However, what about self-esteem?

What about social circles? What about sensory? What about emotion? What about anxiety? What about the environment? What other dynamics are here? What about co-parenting dynamics? Does your ex-partner not give the medication or do they give it at not the right times? Is it burnout and difficult to get the medication? There’s so much more in it than just, oh, medication’s good, I’m just going to give it.

You still want to have a look at the overall picture of your child and yourself. So just because the clinical trial said it’s good, and I still believe it is good, doesn’t mean that I don’t look holistically at my child and make sure that they’re okay. Because medication isn’t isolated to one child and your child doesn’t actually necessarily fit into that mold. Your family makeup might be different.

Your situation might be different. So yes, it’s reassuring, but it’s never cut and dry. We are always, as ADHD mums, making emotional, social, and family decisions. So still critically think about the decisions that you’re making, but also rest assured that the study and the research is there for you to move forward if you’ve struggled in the past or you felt guilty. You also want to trust your child.

If they seem wired, tired, not themselves, or they’re complaining, they said they feel weird, trust them. They may. You also want to monitor regulation, sleep, transitions, executive function, how often they forget their library bag, not just what the GP or the psychiatrist or the pediatrician checks. Have a look at self-esteem. Talk to your child if they feel competent or safe or how they feel at school. Just because they can concentrate, that’s not everything, right? That’s not your whole child.

So trust them and listen to them because they’re a part of this too. If you want to have a look at neuroplasticity, go back through my show notes to From Skeptic to Advocate. That is a really big takeaway as well. And also have a look at the context in which you’re medicating. How is the school environment? Do you have access to accommodations? Does your child feel safe? How does that work and how does that work in for you?

So have a look at that as well. Don’t make this decision alone. If your co-parent isn’t on board and you don’t have that extended family support, bring in professionals who can bridge the gap, show them the research, show them this episode. And maybe the real takeaway here, if I had to really break down one takeaway, one key message, I would say that I trust my gut, but I’ve also got the clinical data. So it’s feeling right for me.

It’s feeling right for my family, but I’ve also got the clinical data. I really need to have those two things for me to move forward with a really tricky decision. I don’t generally trust my gut with no science and I don’t trust the science without my gut. If you’ve got both of those two lining up, then yes, you can move forward.

But that’s a very personal decision. This study isn’t going to solve every single uncertainty we have, but it also gives us more of what we need. It gives us more evidence, less guesswork, and it makes me feel better at night when I lay down and go to sleep. And it also confirms what a lot of us already know, and that confirmation can feel good, that medication is safe. It isn’t a moral failing.

Monitoring isn’t paranoia. It isn’t anxiety. It is actually a real part of medicating a child. Monitoring is part of that. And science is a tool, but it’s now a little bit more on our side than what it was before. So go ahead and highlight the PDF. Go ahead, send it to whoever you need to. Send this episode to whoever you need to. Maybe you take this evidence to your next appointment.

You’re not being difficult. You’re actually being really informed and you’re advocating and you’re being smart and you’re researching. And that’s the kind of parents that we really need out there advocating for our children. Thanks for getting through this episode. I hope you were as excited about this evidence as I am. I’ll absolutely put it in the show notes and thank you so much for listening.

The key message here is you are not alone. Thank you for listening. If you enjoyed this episode, follow us on Instagram or head over and join our amazing ADHD Mums Podcast Facebook community. Everything you do matters and helps to spread the word about what neurodiversity in females looks like.