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!

If he had a sore head you would give him some paracetamol, right?

If you try medication and it doesnt improve anything, noone will force you to continue. These things are trial and error.

Can you trial it for 3 to 6 months? Maybe keep a journal of behaviours for a month first without the medication and then you could compare? If the meds help great, if they don't he can come back off them.

Adhd medication doesnt change the personality. If it did that it wouldnt be the right medication or dose

No personal experience (yet - I fear it may be coming at some point with DS) but a friend went through this with her son and the medication ultimately made him so much happier. He was very aware of his struggles, though, and there were lots of behavioural issues that it doesn’t sound like there are with your DS.
It’s so tough, OP… she and I had lots of conversations about it and it was very much a head over heart decision in the end, but one which she feels deeply was the right one.

As a teacher I’ve seen very unhappy children with ADHD who struggled in school, always in trouble have problems maintaining friendships have their whole lives changed for the positive when they are medicated. Medication doesn’t change the personally it allows the individual to have the mental space to be able to show who they really are. Remember just because he starts medication it doesn’t mean he stays on it.

I think you have to weigh up pros/ cons
Start with a list
E.g age
Social impacts
Emotional impacts
And put the pros/cons in each.
See what you come up with over a week.

What medication are you thinking?

I’m like your son although I’m late 30s. I started medication a few weeks ago and its been life changing in a positive way.

If your child doesn’t start medication how will he cope at uni, at work etc? Is he likely to be an underachiever jumping from one thing to the next and how will this impact his future, inc MH and financial stability?

As a parent with ADHD if my toddler is diagnosed I wouldn’t hesitate to start them on medication.

Give it a try, nothing ventured nothing gained! It can take a little while to get the dosage right, so try for a month or so if possible.

My DS didn't have behavioural issues but he just wasn't reaching his potential as he was too distracted all the time. He was also so incredibly emotional all the time and prone to tears and tantrums. Dr who diagnosed suspected perhaps autism too and said the medication may bring that out a bit, but actually with the medication he seems much less autistic- I suspect the coping mechanisms he put in place seemed to emphasise any autistic tendencies he had?

It hasn't changed his personality, just made him happier and more able to function at school and clubs etc. We've always let him choose whether to take the medication and he knows he feels better on it so it's gone from school days only to every day.

Yes yes please give it a go.
My eldest is ASD and ADHD. I held off medicating her for so long and finally did and realised I was doing her a disservice by NOT medicating. She was able to focus, complete school work and not exhaust all her energy on trying to focus on such small things.
I got diagnosed last year ans began medication BEST THING EVER and I honestly wonder how much better and positive my school life would have been if I was medicated.

I think it's worth a try. We started when DC was 13 and in a very dark place.

For him, it has been the right medication has been the difference between night and day. However, for us, it wasn't like switching on the light. He started on meds 6 months before we saw any significant benefit They gradually monitored the dose and increased it, looking for benefits and side effects. There are side effects.

He has done so well for about six months on his optimised dose. He has actually completed and scored well on his GCSE mocks when he has never completed the exams before and certainly couldn't have focussed on any revision. These are all things that most kids just get on and do, but for us, it has been amazing.

He would not take it if he didn't want to and is able to explain how it helps him. He chooses to take it at weekends and school holidays when I have suggested he may not need to because he feels it is so beneficial.

However, after a great run for about six months, it has worn off. I suspect this is because he has grown so much due to puberty, but maybe the meds stop working after a while. We have a review tomorrow. Fingers crossed we can get back to the good place.

You owe it to him to at least try. The right mediation can massively improve quality of life

To answer your question - I had the same concerns as you. If I had known about the benefits of meds when he was 6 years old, I would have given them sooner and never let him end up in the dark place. He does not feel the meds are a judgement on him, although he did get very fed up when he was taking them for a long time and they didn't seem to do anything. His sister has an inhaler and that has never been an issue. His grandparents need blood pressure tablets. They also take vitamins even though they eat well. He needs pills for his ADHD. We are lucky to live in a time and place that allows us to have these.

Each child is different though and may not be right for your son.

I’m 35 and was diagnosed a couple of years ago. Medication has completely transformed my life - that’s not an exaggeration. I had years of depression and anxiety, could barely function (I’m sure both my parents have ADHD too, so I didn’t get the support and good examples I’m sure you’re giving your son).

It hasn’t changed my personality. I’m still me. In fact I am more “me” than I’ve ever been able to be, because my thinking is clearer, I’m less distracted.

I’ve gone back to studying, and I’ve got a new job that is going really well. My house is tidier, I’m a better parent. My mood is far more stable.

It is absolutely worth trying. Nothing has to be forever - titration can take a while and I can’t lie, it is not always an easy process. I had some bad side effects for a while (although some of that is due to trauma which complicated the emotional side a bit, as well as an underlying health issue). I tried an off brand slow release Ritalin for a while and it did help, but changed to Elvanse. Anxiety was awful for the first month but when I increased the dose and added a minimum dose of anti anxiety (escitalopram) it turned out to be perfect. Obviously that’s not the perfect combo for everyone but I’m explaining it to show it’s not about magically finding a pill that works straight away. It’s worth going slowly and keeping an eye on things. But absolutely try it if he’s happy to, because it can be absolutely mindblowingly helpful.

I also just wanted to say I don’t blame you for having these worries at all. I am actually in the process of getting my 12yo assessed (he was screened by a charity in 2019 and was definitely adhd, which anyone can tell within minutes of meeting him :o)

And I still have wobbles about whether we will medicate. Of course it’s a big thing to medicate and worry about the effects. It’s natural as a parent to worry about that!

But we can always stop medication. The good thing about ADHD meds is that they don’t stay in the system long. It’s worth a try.

He’s a pretty happy kid generally - we were luckily able to remove him from school when he was struggling and he enjoys being home ed, but I still remember the moment my heart broke for him. He’d lost part of a toy the day after he’d left it in the mall and we’d had to go back for it. He was so annoyed at himself and said “mum sometimes I think I’m stupid”. :(

He is so NOT stupid. His impulses and inattention just get in the way. I’m not stupid either and I don’t feel stupid nearly as much since the meds. If meds can help him with that too then I’ll do it.

My ds has adhd and autism. We. Have tried 3 different medications for adhd and with all 3 he hardly ate to the point of losing weight. He just sat and stared into space when usually he's very lively and giggly. Me and dh decided to stop for now as he just wasn't himself and his personality os what makes him who he is. We may revisit when he's older.

I have a close family member with adhd (and other learning difficulties).

Your reasons for not medicating are wrong in my opinion. This isn't who he is anymore than someone who has depression, asthma etc. You wouldn't hesitate to medicate for another illness.
The adhd isn't him, it's possibly stopping him from reaching his full potential though.

My middle son is autistic with ADHD, he's been on meds since age 7, he was just so busy , destructive,and wild.
He was at risk of being expelled as a six year old so something had to give.
Against my instincts we started him on Ritalin,it had a profound effect on him, he was able to concentrate and sit quietly at school. He's very clever and interested in school and meds have been his saving grace.
Hes now 14, still on Ritalin and is thriving at secondary school.
He only gets meds during school , never on weekends or holidays.
Personality wise he's the same cheery kid he always has been.
On a negative note, the Ritalin inhibited his appetite so he ate very little until later in the day and was underweight for a while, that seems to have been regulated.
Second negative was his sleep went haywire. All the stored up excess energy needed to be expended every day when the meds wore off.
It's a difficult decision to make,best of luck to you

As others say, it's worth trying and having concerns is normal.

If your child suffered from asthma you wouldn't be having concerns over using an inhaler. It's the same in this situation, it's medicine to help your child.

Thank you all for your replies.

Yes @santasmuma and others that I’ve mentioned giving other medication, yes I would give them that. There’s something about choosing to give your child a medication to actively change their behaviour that just gives me pause for thought. It’s not at all a judgement on those who do because it seems right but it’s just a difficult thing to admit that you actually want them to behave differently!

@Not2daySatan this is my biggest worry 😔 I’m so sorry that happened to your son. It must be so difficult to build your hopes up thinking he’s getting the help he needs for it then to not work the way you want it to. I hope he’s managed to find some other coping strategies. May I ask if you have, what they are?

Watch this.....

Untreated ADHD is a associated with very poor health, social and educational outcomes. By not treating him you are essentially telling a person with a broken leg to run a race without their crutches.

@Branleuse @GrettaGreen @perenniallymessy thank you for clarifying that, so if we give it a go and it’s not what we hoped there’s no harm done? That will likely make the decision much easier, thanks so much.
@Beefstew yes, he’s very clever and sooooo enthusiastic, especially where school is concerned, and I don’t want that to change! I fear that if we don’t medicate things people will start to get more frustrated with him as he gets older and then he’ll totally switch off.
@SingToTheSleigh that almost made me cry, I feel so much for your boy 😔 at the moment DS is blissfully unaware of how he is, and has rather a high opinion of himself 🤣 I’d hate for him to EVER feel like he wasn’t good enough, and I feel like that time might come at school in the next couple of years if we can’t sort out his concentration now.

Thanks to all of the adults with personal experiences as well, it’s great to hear the positive effect it had on your lives so I can see it from the other side.

@RavingAnnie thank you. I think I’m hesitant because he isn’t frustrated by his ADHD, he’s completely oblivious to the fact that he should be able to do these things. He does OK academically because of his 1:1 support, but I guess I have to think ahead to exams etc. where he will be expected to get in with things on his own. There’s no way I could ever foresee him being able to do things like that without medication.