ADHD - to medicate or not to medicate?

[TheWinterChild]

DS has been diagnosed with combined ADHD and autism. The autism doesn’t really affect his day to day life with the strategies that we have in place so I’m not concerned about that too much. However, he really struggles with the ADHD side. He has none of the extreme behaviour, doesn’t really get frustrated or anything like that so in many respects it’s manageable, however he literally cannot focus on anything. He has 1:1 support in school for no other reason than to keep reminding him what he’s supposed to be doing because he is so easily distracted. He can’t sit and watch anything on TV or play on an iPad. He can’t even play with his toys because as soon as he gets them out he’s had enough and wants to move on to the next thing. From the outside it looks completely exhausting (I’m not going to lie, I’M exhausted by it as well as him) and it’s debilitating. He can’t access any out of school activities that he wants to do because, despite being desperate to do them, once he’s there he’s bored and wants to come home, and doesn’t pay attention to what he’s supposed to be doing. Paediatrician thinks behaviour support will not be useful because it’s not his behaviour that’s the issue (he doesn’t have extreme moods, tantrums, he’s not even disobedient, if anything he is overly compliant, but he’s just on his own planet). We have been offered medication, but I’m worried for 2 reasons:

1. This is my child and this is who he is. If I accept medication for him I feel like I’m saying he’s not good enough. He is! But it’s so hard watching him go through life like this.
2. I’m worried about what the medication will do to him. Is it going to change his personality? I love the bones of him, he’s the sweetest, funniest little character and I don’t want that to change. It’s so hard to decide what to do. Can anyone give me some real life anecdotes and help me make the decision? He’s 6 by the way. Thank you!

@TisTheSeasonToBe it’s modified release methylphenidate that has been recommended as the starting point

I have a DC with ADHD (combined type) and we're not medicating at the moment as we already struggle to get her to eat. But she has taken melatonin for a year and a bit and that's been life-changing, because she used to have awful trouble getting to sleep. I wish we'd known about it before.

Have you read The Boy With the Butterfly Mind by Victoria Williamson? It might help you make the decision.

100% give it a try, I held off for years because of the stigma around ADHD meds but the difference in my son is like night and day. A good Doctor will work with you to find the best meds at just the right dose to make a difference but not change them / their personality. My son takes his everyday as he hates the way he feels without it, as an example we forgot a couple of weeks ago and he struggled so much in school that day, got next to no work done and nearly got sent to isolation for not sitting still / swinging on his chair - as soon as he got home he said mum I don't think I took my tablet today as school was awful. His Dr keeps an eye on his weight and it has been a strange experience to let him eat a lot of food which we wouldn't normally - think high calories, full fat etc. so that a suppressed appetite doesn't affect his weight (alongside healthy things of course), the only other downside is his sleep is affected but he takes meds for that and sleeps soundly now - he's 13 and if I ask him which he prefers it's always life with his tablets as he hates how he feels otherwise - it was the best decision we ever made.

I had all the same doubts plus a few more. What convinced me to give it antry was that, unlike anti ds, each dose works independently. If you medicate him one day you've medicated him one day. If you don't, he acts exactly as he generally would without meds.
The first med we tried didn't work. Nearly put me off completely. He didn't focus any better and was sullen and grumpy alongside his usual destructive stuff. Normally he's such a sunny soul.

We lasted a week.

I was persuaded to try a new med when he himself said to me, very sadly and wistfully, "it would be nice to be able to concentrate, mummy". He knew about the meds and what they might do and wanted to try. He was 8. He's 9 now and the meds he got after that first bad lot were incredible. Instant effect. He's still exactly himself. Still silly and annoying and hyper, but he just has more control over himself and is able to direct his focus a bit. He's achieving his potential in school now and is so much happier. He gets asked on play dates (sometimes, not very often, but more than before and he copes better) and he's more confident.

I get round the appetite loss by feeding him a huge calorific breakfast along with his meds, which i give really early in the day. They've usually worn off by 6ish so he has tea at 5 and then a supper a couple of hours later. I use cream, nuts, eggs - lots of high calorie foods and if he has a day off meds at the weekend o make sure to have lots of food in. He'll easily eat more than my 6'4" partner on those days!!!

It feels like such a hard decision at your point, but it's not irreversible and when it works it's literally life changing.

I'm currently undergoing diagnosis myself. I hope meds help me as much.

Oh and should say in the UK they usually start you on the short acting meds which are in and out of your system in around 8hours, the ones where you have to build up over several weeks to see an affect are usually much further down the line of nothing else works.

I have two children with ADHD and autism (and learning difficulties) and both are medicated. I was really reserved to start but so glad I did.

Any questions feel free to ask.

Positives are that they can concentrate and focus. It helps them control their emotions more, least with my boys it does, it made a huge difference to them and it works really well. Also means they actually see professionals occasionally for monitoring and that really helps too.

Negatives, appetite. If you child is on the slight side then you may have a battle to maintain weight, with my eldest I have that struggle, my other child is on the 50 percentile currently and it's easier with him.

Well medication could make the difference between succeeding at school and totally failing

I have adhd and I failed school , I wish in my day there was a pill available to help me concentrate, my life might of turned out very different of it had.

My son is currently going through adhd assessment and I will 100 percent try medication if they think it will help as I don't want him struggling like I did

I have a 17yo with inattentive ADHD (i.e. the attention deficit but not hyperactive) and high functioning autism. He takes a non-stimulant medication, has done for the past 7 years, and it has been life changing for him.

@TheWinterChild essentially all the ADHD medication is doing is to help maintain a functional level of noradrenalin and dopameine in the brain, which helps the sufferer to concentrate more effectively. Our paed explained it as comparable to a type 1 diabetic needing to inject insulin to maintain safe blood sugar levels: an ADHD sufferer needs to physically get more of those chemicals into their bodies to enable the concentration part of their brain to function effectively. That's what the medication does.

It's got to be worth giving it a go. If it doesn't work, then you can take him off it. But worth trying.

Also worth mentioning that the stimulant meds (methylphenidate) don't work for everyone so don't panic if he tries one med type and it doesn't help. DS didn't get on with methylphenidate at all but atomoxetine, which is constant slow release and non-stimulant, has been brilliant for him.

Good luck.

We also had concerns when my DS was medicated, but I can honestly say it’s completely changed his life , he’s gone from failing in class to now well above average, the teachers can’t believe the difference! And he only started in September- he’s still got the same cheeky personality and by the time he’s home from school it’s worn off

Yes, the stimulant meds leave the system within about 4-10 hours (from short acting to the longer acting ones). They don't stay in the system.

The appetite thing is a problem- DS was already underweight when he started the meds so has been closely monitored for weight. To be honest without meds he's usually too distracted to feel hunger anyway! He tends to get super hungry at about 9pm so has milkshakes, cheese, nuts- anything quite nutrient dense. He's actually gone up the growth charts a bit- his BMI has gone from underweight to just at the bottom of ok

DS has also struggled with sleeping- both pre meds and with meds. He now has melatonin before bed which helps him sleep.

Yes, try medication. It's so frustrating for smart kids when they can't concentrate and keep missing important information because they're staring at the clouds. These meds help them stay tuned in.

Ah this is a hard one. First line should be behavioural support unless he’s really impaired from it so I would be very clear that the school needs to accommodate him and how he learns and aren’t pushing for him to be medicated. I’m pretty sure one of mine has adhd and I will really look at the social/emotional/academic impact and decide when the time is right if she does get a diagnosis (I was diagnosed as an adult so I have a fairly good understanding. Speak to a second doctor if you want another opinion regarding the best time to trial meds.

Oh yes. I entebbe feeling like school were pushing meds to make their lives easier, but it was unfair of me in hindsight. They have worked so hard to accommodate him and he really did need the meds in order for him to access the learning. I felt very defensive, as if they were saying there was something wrong with my son.

My DC are Autistic, 2 friends have DC with ADHD within our local SEN group. Their children are on medication for ADHD, as they've gotten older they've been asked and have all wanted to continue taking it. They like how they feel on the medication. It doesn't change who they are, but it allows space to learn, to focus, to do the things they want. It doesn't work for every child, and sometimes the side effects are to bad, but I think it is worth trialing medication to see if it's right for your child.

It took us 4 years after diagnosis to try medication and it helps enormously. Without the medication ds is hyper beyond control, does not listen to anything, there's no one home basically. With it we can actually have a conversation and some enjoyable time with him. It enables him to have a settled day at school and that means that he isn't stressed when he comes home. It hasn't changed his personality or anything like that. He's still him, he's just calmer.

Although, since starting medication, it has become quite clear that ds probably has autism too and we are seeking a diagnosis for that.

This has been a really useful thread. Thanks for starting it, OP! Can any of you explain the process for getting to see a paediatrician so that medication can be prescribed and monitored? We had our DD diagnosed privately as although we'd spoken to our GP, nowhere would take a referral in 2020 and the GP wouldn't see her in person. Do we just go back to the GP? When I spoke to them post diagnosis they said they didn't have the correct equipment locally to monitor under 12s on ADHD meds, which was a little worrying.

@Phineyj you would need to be referred to either camhs or paeds as GP’s don’t prescribe. They would want to assess need for medication as the potential prescriber so a private diagnosis won’t expedite that process. The only way to do that is to get a private prescriber and later get a shared care agreement with the gp but the initial cost would be there for consultation and meds.

Just to clarify some areas paeds assess and others camhs so make sure you are referred to the right one for your area.

I was also hesitant but read as much medical research as I could get my hands on about other methods (academic, so have access to research journals). Empirical evidence is that meds are by far the best solution. So we reluctantly decided to try and, like others, it's been a total game changer. Our DS is still our DS but happy and not frustrated and angry all the time. If he has forgotten his pill in the morning, he now calls us from school to bring it in because he "Can't think and everything is too hard." Do it.

@Anothermother3 his school are actually doing a fantastic job of supporting him, I know how hard it can be to get him to do anything for any length of time and yet he’s managing to meet expectations across the board (he’s even exceeding in some areas). It’s just so hard for him to do it and I worry that one day he won’t have such a supportive teacher/school. I want to make life easier for him!
@Phineyj unfortunately there’s no quick answer, you need to be referred to CAMHS for the assessment and the waiting lists are huge, DS has been on one waiting list or another since he was 2, finally got put on the CAMHS waiting list for assessment in summer of 2019 and just received his diagnosis now. I understand in my area there’s a new process where parents can self refer for assessment but you need a lot of supporting evidence from the school and medical professionals, so if your DC hasn’t yet seen anyone within the NHS you might not be able to without seeing a paediatrician first (which you’d have to be referred for by the GP). Good luck

In terms of appetite, DS has an eating compulsion, so in many ways that might actually help him. It will be interesting to see if it has any effect, as he eats even when he doesn’t have an appetite. It’s really difficult to know when he is ill as he’s never actually lost his appetite. He’s average build.

Medicating has been a game changer for my daughter. Things were falling apart - friendships, schoolwork, life at home. The change since medicating is amazing. She is more stable emotionally, the self harm has stopped, her grades in recent assessments were at least a grade or sometimes two higher across the board.

Of course it doesn't work for everyone but given it doesn't have a build up effect but leaves the system same day I can't see the harm in trialling it...

Ps my daughter has the slow release concerta XL

It does inhibit her appetite a bit while it's in her system but she makes up for it in the evening after it's gone. She's also a bit of a compulsive eater.