Parents' experiences of ADHD medication side effects and personality changes

[FieldsOBarley]

I've finally caught up with the Channel 4 ADHD myth prog this week.

I know it painted a one-sided view, but got me thinking (as parent of a child with suspected ADHD) about side effects of the medication for children and young people.

The Mum on the programme talked about her son not being himself and his personality changing on the meds. Have others experienced this, and what side effects did you notice for your child?

It's interesting the Mum said she was only medicating him really for school, to get him through exams etc, and the presenter concluded that it's the school system that needs changing, not the children. Very thought provoking!

So yeah, if your child is on ADHD meds, what side effects have they experienced and would you say it's changed their personality (for better or worse!)

Anyone?

I have observed many ADHD children as a child therapist and I observed that medication harms the child and they only end up in a devastated condition. It is better to regulate their behaviors at early ages through therapy so later in life they become able to manage their condition.

We were unable to find any therapy that helped our son (9) focus and concentrate in class and elsewhere, and after he came home with a maths test paper in which he had only attempted 4 questions, 2 of which were wrong, enough was enough. He has been on meds for nearly a year and while it is not a cure all, it has improved his focus at school and for extra-curricular activities, although he still gets angry easily. I don't think meds claim to help with behaviour particularly - that requires time and patience, and we're not there yet.

I don't think it has changed his personality but I do worry about his growth as he is on the smaller side for his age - not unusually so, but I don't know if he'd be bigger if he ate and slept more, and the meds do have an impact on both.

I am not sure about children ending up in a "devastated condition". What does that mean exactly?

I had an adult friend who went on Ritalin.
She became extremely productive and focused.
But also a bit reactive and slightly paranoid.
If you know anyone who uses cocaine.....the personality change was a little like that.
She picked a lot of arguments and fell out with a lot of people.

Despite this- I did consider medication for my ADHD teenager. My reasoning was that adult friend didn't have anyone in her life able to suggest she stop taking it whereas DS has me and DH.

In the end he decided against it anyway which, at 14, I felt was his choice.

DS first went the therapy route and this has been helpful for him

he started medication two years after he was diagnosed, first few weeks he was low in mood but would not come off it. We were in constant contact with his consultant and she also spoke to him. He found it quite overwhelming experiencing a life where he is able to concentrate where he isn't constantly zooming out and thoughts had slowed down. Knowing what he has missed out on was quite hard for him to process. It does blunt him and his responses, his mood is a little flat but this is not a constant its while the medication is in full effect

he only takes medication when studying/during exams. he has to have structure when he is taking his medication he knows this or it impacts his mood too much

He did fantastically in his a 'levels and this is the first time ever he has done well at school, and for him to finally experience this is wonderful its made him so much more confident

ADHD meds need to be very carefully monitored and too often it isn't and that is a concern

@HRTQueen how old was your son when he started on the medication? Is it the type that only lasts a short ish time?

The first we tried sent DD into terrible rages so we moved on to another and this works well at school and when she’s studying. It does suppress her appetite and can disrupt her sleep but that has improved as she has aged. She only takes it when she wants to do school work and we are working towards her being self sufficient and looking for career paths that will mean she won’t need the meds in the same way

He was 17

its Lisdexamfetamine it’s long lasting but he found it lasted about eights hours

Yes a few really uncovered her autism and she was like living with an evil demon. She came off. The side effect s not worth it.

Another one here where DD just takes it to school has made a huge positive difference to her written work and performance in exams and tests we also try a million other coping strategies but the medication has made the biggest difference am hoping that as she gets older she will need it less or at least be more able to recognise when she does need it. No big side effects at all.

My son has recently started medikinet. Very worrying to read things like medication leaving kids in a "devastated condition". When people talk about the 'therapy route ' what exactly do you mean?

My son has had therapy. We paid for it between the ages of 6 and 7, before we knew he had ADHD. We just had a very very angry child who hated school. It cost a fortune but the one thing it did do was give us a third party who said she was fairly certain he was neurodivergent!

To be honest I did see a personality change at first. DS is very young for his age (common for children with ADHD) and I noticed that on the meds he feels older, more like a typical 9 year old. I find it unsettling only because I don't think it's quite him. At first he was very angry on it but not in the explosive way we are used to, he sort of simmered on it constantly. This has definitely improved so I wonder if it was just his body getting used to it.

He is now able to sit and listen to the whole lesson input at school, for the first time in his life. I

Yes. My stepdaughter became calmer, more thoughtful and started to take joy in her hobbies rather than just mess about. She made more secure friendships. She started to apply herself at school, identify as a academic and hard working rather than call herself stupid, and found the subjects that she really loved. She had much fewer emotional outbursts and was more able to process her feelings. It's without a doubt the best thing we've ever done for her.

The only possible negative is that her autistic side is more pronounced.

I'm guessing this is what a lot of the criticism is actually about- most people with ADHD are also autistic and NTs don't like autistic people.

Thanks everyone - these comments are so helpful and I'm going to take time to read through them all later.

I think this has emphasised the concerns I already have about medication. My child has a lovely personality. Very engaging, cheery, bright, curious, funny, friendly, enthusiastic and such a zest for life, always seeking to try new things. After years of quite bad sleep, now falls asleep quickly at night and usually sleeps through, though quite an early riser. The issues are excessive talking, brain going a mile a minute, lack of concentration, anxiety, very unsettled overall, impulsive and always on the go. The impulsivity is causing friendship issues, and school is a bit of a disaster waiting to happen!!!

So it would really just be medicating to avoid getting into trouble at school and to get through schoolwork and exams. I am worried about the impact on sleep and that her personality will be quashed and she'll become quiet and withdrawn. Also worried the anxiety will worsen. It's such a hard decision, particularly when the child themselves doesn't really see the problems and hasn't mentioned or asked for meds.

I really appreciate everyone taking the time to reply!

My ADHDers take concerta slow release. Its has been life alteringly good for them. The anxiety is under control, they can proccess upsets more rationally and are so much happier. They are still fun and engaging people to be around. I saw that show and didn't recognise any of what the mother said about medication.

The anxiety is a bit chicken and egg though

DD was anxious about failing at school and the meds have helped her realise she is capable of academic success and so school isn’t as anxiety inducing

i wouldn’t say the meds have quashed her personality - it is still very big!!!

And what happens when they are only diagnosed as teenagers or later?

Medication has been a roaring success here. My teenage DS is on a non stimulant medication. He is calmer, focuses better, but still very much himself. It's not a complete cure all, he's also autistic and prone to bad meltdowns. They are less frequent with meds but not gone completely.

But since being on meds he's in the classroom again, he was having 1:1 despite being at a special school. He concentrates in his lessons. He can do the things he loves outside school because he's much more able to wait and be patient around other people. Medication is the best thing that ever happened to him and I'm angry it took so long to access it.

I see you've only considered the responses that validate your original stance against medication. You say your daughter is unsettled and having friendship issues but then that the meds would only be for school related difficulties. Are the friendship issues and her emotional state not important?

Oh yes of course! Sorry, I maybe didn't word my post as well as I could have!

Her issues mainly seem to centre around school, school is and always has been a big source of anxiety. Outside of school, she copes quite well with her clubs etc. Family life is quite chaotic, but we've kind of learned to adapt (I suspect I may have ADHD too.) I guess I just worry that medicating her will take away many of the positive parts of her personality, as well as some of the negative ones, and make her not really her, if that makes sense.

Two of my children have ADHD/ autism. The eldest struggled at primary but was very bright but got into lots of trouble only at school because of impulsivity ( often others would load the gun and he would fire it) and inability to concentrate. By age 9 he had feelings of wanting to kill himself. The reason: logically he knew what he did was wrong but still did it- his conclusion was therefore he was a bad person. This was back in the 1990s when ADHD was not even recognized by many people. We tried therapy, nutrition, everything and nothing worked. The final decision was to medicate- and what a transformation. It did not solve all his problems, but he learnt to regulate himself. He came off meds after completing his doctorate. With my second child, we recognized the condition by aged 7- they went on the meds straight away.
Our doctor always said by age 26 they will catch up their peers- 1/3 will no longer have the condition as their brains will have rewired themselves after taking meds; 1/3 will still be ADHD but will cope without meds; 1/3 will be on meds lifelong.
My view- if your child has been diagnosed by a psychiatrist as having ADHD and they recommend meds, at least try it, especially in these early years. Find out what works for your child- on meds only at school/ all the time etc. Also alongside meds you may still need to explore other therapies eg working memory therapies like Jungle memory and CBT, and work out what is the best combination, bearing in mind that puberty might mean adaptation too- weekly psychological meetings with a therapist. It’s a long journey and nearly broke us at times, but you can just only do your best. TBH I’ve noticed that many of these therapies are not so easily available these days as the number of children seeking help has increased, and lack of resources in the NHS so I do know this is no longer available in the way it used to be.

My ten year old has been on medikinet for 3 years and it works well for her - she emotionally regulates much better on it, and doesn’t get so frantic, plus she can stay focused and calm much easier & longer. Definitely not a magic cure but she’s just the same ‘her’, full of enthusiasm, joy, movement and exuberance and not at all muted.

I’ve posted on one of the other Channel 4 ADHD threads but my child is medicated and he is still completely himself personality wise. The difference is he can now concentrate, he’s getting his school work done and often one of the first to finish, his head is much quieter, he responds when I call his name to do something and does it first time most of the time, he no longer asks for junk food frequently, he no longer randomly shouts out stuff, he doesn’t tap incessantly. He’s absolutely flying since starting medication and is doing better in his extra curricular lessons too. No side effects. Just a child who looks like he’s going to reach his potential after years of despair.

He needs it at the weekends too. One weekend without and it was very challenging for him and the rest of the family. I take the same medication and have had no personality changes and no side effects after the first couple of weeks.

My son 9 is on the wait list for meds, I’m torn but I can’t have him throwing pencils around the classroom, disturbing other children and making his own life a misery as he’s so upset after he’s behaved badly. We are going to try them for his sake and take it from there. If in life I could have what I wanted I wouldn’t put him on medication but society says children must behave a certain way!