Can anyone talk to me about side effects and benefits of ADHD meds in kids?

[nightwebs]

DD13 is soon to start meds for ADHD and the psychiatrist discussed the potential side effects of these which we understand. For those of you who have DCs on the meds, did they experience any side effects upon starting them and how long did they last? Also, how do you feel that the meds overall helped them with their ADHD symptoms? Am feeling anxious now we're at this stage and hope there isnt too much for DD to contend with here.

The handwriting thing is interesting. We noticed that ds writing was getting worse during last period in school and that he was just so much more switched off. He now has a top up dose at lunch time and that sees him through the day nicely!

Equasym XL here and whilst it doesn’t change personality my Dd definitely feels it makes her less fun. She doesn’t take it at weekends or during holidays only on schooldays. Does affect appetite but the minute it wears off it’s fine.

No other obvious side effects and she’s aware that it’s improved her attention at school.

We use medikinet. I think initially we had some tummy aches but don't get that anymore. Personality shines through as before and I haven't noticed a problem with appetite. I suspect we are on a low ish dose but it's enough to take the edge off the ADHD and make a difference.

We also have the handwriting thing! It is instantly neater on meds.
We also had massive issues with self esteem. And despite the fact he was diagnosed young (Year 2) to some extent the damage was already done. We didn't start meds for a bit but I wish we had them earlier. Not because he needs to do great school work or because of behaviour but because it has helped his self esteem. He asks to have them if he is going to school or has an activity which will require sustained focus.

Did you read the whole of my post?

If you really are in your late 50s I would imagine you’ll remember the Daily Mail hysteria about Ritalin being a “chemical cosh”, turning undisciplined kids into robots because their parents couldn’t be bothered to parent. I really struggled with that depiction when it was clear my DD’s inattentive ADHD would benefit from medication.

But my DD is still who she is, on the Elvanse. Still funny. Still loving. Just more likely to remember to hand in her homework and not stare into space rather than pay attention.

@nightwebs - have a look at the Additude website. There is a host of useful, accurate info there. It’s American though, so will reflect their treatment options, which are mostly the same. They call Elvanse Vyvanse, for example

https://www.additudemag.com/faq-about-adhd-medications/amp/

Thanks everyone for sharing. We've still to have out first appointment to discuss meds so not sure exactly which one DD will be put on. Interesting to read about handwriting - DDs is awful, it looks like like a spider has died on the page! A lot of reluctance and avoidance with homework tasks she perceives to be tricky, I'm hoping the meds will help with this too.

We started on Ritalin but reduced appetite

Moved to Xaggitin and rescued appetite and may him a bit low

(Both enormously improved behaviour though)

so now on non stimulant Intuiniv . 3 days in

Sorry typo. Xaggitin reduced appetite and made mood low

My friend's child lost her appetite and has lost so much weight that she was advised to stop taking it until her weight stabilises.

My Ds is on Equasym. The side effects are that he has lost his appetite and he was a small eater anyway so I have to bulk up his food as much as possible.

benefits- he is calmer, happier, more content. His ADHD (and autism) was severely impacting how his brain worked and the ADHD meds are like they have helped reveal the real person that was always there- but the other stuff was just getting in the way. It's really been a wonderful thing for him.

We were lucky that the first meds we tried worked. But his psychiatrist had said that some types might work and others not so it was a test to see what was best for him in the early days.

There are none stimulant medications which can be used which don’t have the same impact on appetite which may be useful for her to explore.

No a parent but an ex secondary teacher. I’ve seen students lives transformed by medication. The biggest impact that I observed was the ability to maintain friendships. It was amazing seeing a student become happier and more relaxed and with an increased sense of self worth. I have really seen some life changing differences. Unfortunately for some diagnose and medication came too late to have much of an impact in their education but for others it just made things easier.

I have seen the positives with a child in my class. On medication he can focus. Without it he is fidgeting and moving and completely unable to do his work. I was actually shocked at the difference in him. There was no way he could succeed without it.

DS1 started on atomoxotine (sp) which is a non stimulant as he has kidney issues and some adhd meds increase blood pressure. These take a while to have an effect as they are a cumulative dose. There were very few side effects but they seemed to stop working after a while.
He now takes Xaggatin and the main effect is, as others have said, loss of appetite which is difficult as he's very slim.
He's 15 now and in the exam years, he really feels they help him slow down and make his brain less busy. He still very much thinks out of left field and is still a fantastic problem solver!

I'm a primary school teacher. I'm afraid I only see things from the classroom point of view so don't know about side effects but I have taught a few students with ADHD who have started taking medication while in my class (I teach 7 year olds and this seems a common age to start medication). They are still the same child but their attention levels and ability to focus is noticeable on medication and they tend to find it easier to engage with school work. I remember one parent who was very sceptical about starting but seemed happy with the results once she did. I know when her DC first started taking it she only gave it to him on school days as she wanted him to have a regular break from it. I'm not sure if she still does that (or if it makes any difference!).

Alot of parents I know (from a support group I belong to) take breaks at certain points for whatever reason (in our area there was a major supply issue over Christmas and you can only order 1 month at a time as these are controlled drugs so people were panicking about it and trying to manage their own supplies). But breaks should be discussed with the psychiatrist. Some medication can be stopped quickly without issues but others need to be tapered off.

What medication has your DD been prescribed? Is it a stimulant? Long or short acting? (If you tell me the name I can figure it out myself but it does depend on the medication). Also, keep in mind that meds like this affect everyone differently and the way they affect an individual can also change with time. It can take a while till you find the right medication at the right dose but it's definitely worth it going through that process of tweaking your medication because when they do work it can be life changing.

don't have a child with ADHD (at least my kids aren't diagnosed yet though who knows they might inherit it). I have ADHD and o.take elvanse, which is long acting or extended release dexamphetamine. I have also taken Dex IR (short acting) and methyl phenidate (ritalin) before. It's definitely a good idea to observe your child closely and ask her if she's noticed any changes. The side effects can be quite insidious and when I started taking them I sometimes didn't even realise that my feelings were affected by the meds.

I am not sure if it's different for a child but for me the side effects were:

1. Dry mouth: this is quite extreme and very common. I also feel as if my skin gets drier but I am pretty sure I am dehydrated. Make sure she drinks plenty of water.

1. Loss of appetite: again very common and also quite extreme. Make sure she eats a good breakfast before she takes her meds with some protein. That will also help reduce the other side effects. This one wears off after a while.

1. Agitation and anxiety: this is the worst side effect for me and I hope your daughter will not have to deal with it. When I took meds when I was younger it wasn't so bad. Somehow the side effects seem worse now that I've restarted my meds in my forties.

1. Flat effect: this is something that didn't affect me when I was younger but now I feel very matter of fact on them. A bit joyless. Less cheerful. I normally love being silly with the kids and having fun but on meds it just annoys me ajd j don't have the patience for it.

1. Insomnia: some people with ADHD sleep better when medicated as it calms their thoughts. Not me. If I take them too late I can't sleep.

1. hyperfocus: the meds don't help you with procrastination. On the contrary. I find that when I'm medicated if I focus on the wrong thing I can lose hours on just that one thing.

1. Crash when the meds are wearing off. To me all the side effects get worse towards the evening when the meds wear off. Also.my ADHD symptoms seem to get worse than baseline but maybe I'm just imagining that. If you'd DD has this problem (she might not) and if your doctor agrees what can help is to take a very small dose of an iR stimulant in the evening to make the transition more gradual.

Based on my experience start with a very small dose and then very slowly titrate up. This is difficult with the NHS because you don't see your psychiatrist that often but ideally you'd be seen every month and have your meds tweaked. Don't be tempted though to start with a strong dose. When I started taking them and every time I restarted my medication I went through a few months of very unpleasant agitation, anxiety and just feeling unpleasant. This time round.i started very slowly, went slowly up. It was a pain but it was worth it as this side effect hasn't been too bad.

You haven't asked for them but here are a few pointers:

1. the first few months for me were very hard when I took them for the first time. Hopefully it won't be the case with your DD but be on the look out for mood changes (but don't bug her all the time about them and don't attribute everything to the medication) but also maybe explain to her that this is what can happen. I found it very disturbing but it got better.

1. The meds do nothing for procrastination. If procrastination is a problem you will need other behavioural tools for that but it will be easier implementing and following these tools on meds. It took me about six months to learn how to work optimally after I started taking the meds.

1. the meds don't work very well if you haven't slept enough and also the side effects are worse.

1. In general, the meds work better with good nutrition, lots and lots and lots of water and exercise.

1. Be prepared to advocate for your daughter to be seen more frequently by a psychiatrist. My care plan when I was first diagnosed and started taking meds stated that for the first three months I need to be seen monthly and then every three months for the rest of the year for medication reviews. I didn't see anyone for the next 6 months and then yearly and it was very tough dealing with all the side effects and mood changes on my own. I hope it's different for children.

Apologies I have written a novel. Please keep in mind that the side effects are very different from individual to individual and hopefully your daughter will take to them easily. Best of luck. When they work well they are amazing.

As I said above they might not help with avoidance or procrastination but once she starts she will find it easier to focus. She will probably need other strategies to get started.

Interesting.

DD (12) recently diagnosed privately. Says she has to “concentrate to concentrate” and is exhausted after school (masking and double concentrating). Major issues with rejection sensitivity. Paediatrician didn’t think medication would help her.

My DS started meds in February. I put them off for quite a while after diagnosis, but wish now that he'd started on them sooner. Like others have mentioned, it's the knock ADHD has on their self-esteem and confidence that saddens me, not his academic achievement. And it's that that led to me asking the consultant to prescribe meds.

We had a bit of a rocky start. It was half term holiday and my brother was visiting from overseas. My DS adores my brother. The first few days of the meds DS was really emotional. I mean, he's often emotional, but this was a very quiet, sad, tearful kind of emotion. Not the BEST DAY EVER/WORST DAY EVER giddy highs and crashing lows in the space of a few minutes that he usually has. But I think the meds just really threw him at first, and he felt very out of sorts. He felt everyone was ignoring him, but really it was that he wasn't constantly demanding attention of everyone which is how he is without meds. And he was linking his sad feelings to my brother's visit.

I stopped giving them to him after 4 days as I really didn't want them impacting on his relationship with my brother. Then he started them again when he went back to school.

Honestly, they make such a huge difference to his daily life. Things are so much easier for him, and for me admittedly, when he takes them. Huge improvement at school. He's better able to do what he needs to do, make sensible choices about his behaviour, control his impulses, etc. etc. He's made new friends this year which I'm sure is linked to it to, as he's just a whole lot less annoying to other kids when he's on his meds, bless him. 😅

He's still high energy, but even that's just a bit more controlled now. He's still chatty. Has all the same interests, etc. So whilst you can see a difference in him, the meds don't actually change him, if you see what I mean. He's the same child, but just slightly more in control of his own behaviour and emotions.

Side effects, as above with the emotion when he first started. Also, loss of appetite which is a bit of a worry as a he's a skinny thing anyway. It's also affected his sleep. Unusually for a child with ADHD, he's always been a great sleeper and he's in bed soon after 8 and asleep by 8:30 when he doesn't have his meds. He's on 12 hour release ones (Dlemosart), but even though he has the meds around 6:30 every morning, and you can literally see them wear off at 6/6:30 in the evening, they can still affect his sleep and he's sometimes awake until 10. I'm worried about this and the weight loss of course.

But, on the whole, meds are great for him.

One thing I am worried about though, I now seem to have forgotten how to parent him well when he's not on them! All the tips and tricks you develop as the parent of a child with ADHD....I seem to forget them as days are so much easier when he's on the meds, as these behaviour management strategies aren't often necessary. His behaviour is always a bit of a shock when he doesn't take one now. I wonder how on earth I managed before.

I was deeply against medication because of this. My ds has medikinet. It levels him. Makes him a better version of himself. He's visibly experiencing more clarity.

My dd13 is just about to start on meds so this is really helpful thread!

I'm worried about the weight loss as she is already only 3rd centile bmi

agree about the self esteem - teachers seem to think that because she is loud and extroverted that she is robust but underneath she has no confidence and regularly cries about how stupid and ugly she thinks she is. Not helped by the handful of teachers who seem to think she is just naughty.

im really hopeful the medication will help her so fingers crossed!

Self esteem is something I worry about - DD got picked on by a couple of the nastier kids after starting high school, i think they could see she has additional needs and made fun of her for it. She also said recently that she feels ADHD 'rules her life' ☹️ I just want to do the right thing by her.

Very similar to my dd - maybe we should have a support group thread!

worse thing that happened was that when they were deciding what their class was going to do an assembly on they decided to do it on neurodiversity - dd is the only nd in the class and it made her feel like a freak. Other girls telling her they understand adhd better than her because she’s stupid etc. she’s remarkably resilient on the outside but inside it gnaws away at her

@nightwebs I was really against trying medication. I worried it would change DS or 'blunt' him somehow (I cannot phrase that differently, hope it makes sense).

But his psych made the very good point that just because we tried it did not mean we had to stay on it. It was a trial, not a sentence. Anyway- for him it has been wonderful. On occasion for various reasons he does not take it (forgot or whatever) and it is really noticeable..... a reversion to full on meltdowns and what i call 'days of carnage'. (he does has autism and learning difficulties t add to the mix though).

But his gorgeous sparkly little self has been uncovered if that makes sense. before his difficulties just impacted him so badly his real self was flattened. We have been really lucky though- he had a great psychiatrist and we see her every 6 months and his blood pressure and heart and all that are monitored.

My DD, 9 diagnosed with ASD/ADHD was put on Equasym 10mg last summer. It worked really well in terms of School and concentration but destroyed her appetite. When she was seen for a review in June she'd lost so much weight we had to stop the medication immediately. Unfortunately School became a big issue again so we started with Medikinet 5mg. It's a small dose and half is released immediately and the rest throughout the day. She improved massively again at School and her appetite wasn't affected. She's now taking a break for the summer and won't be having it at weekends. I was very wary of putting her on medication but we were at risk of expulsion at School so I had no choice. I think School see the biggest difference. I've been well supported now by the ADHD nurse who is calling every few weeks to check on her. There are lots of different medications and it can be a bit trial and error as to what works for your child. Make sure you ask how the medication is taken. My daughter has hers in yoghurt as she can't swallow a pill so it needs to be a capsule that I can open.