ADHD meds - grateful for a handhold with titration and switching to slow release

[BabycakesMatlala]

DS (10) received a diagnosis a couple of months ago (no big surprise). We started on the classic 5mg methylphenidate breakfast and lunchtime, then progressed to 10mg breakfast and lunchtime, and we're now trialling slow release 20mg Equasym (so still methylphenidate).

It's hard doing this when DS is mainly at school, and I'm slightly doing my nut trying to observe effects, but it seems like he's having smoother curve up and down, but possibly with quite a sustained patch an hour or so after lunchtime where he seems pretty "off his meds".

I'd be really grateful for others' experiences of trialling meds generally, and of switching to slow release. We've had to go the private route, but the psychiatrist we've been seeing has nonetheless been pretty bloody cursory, and I'm not feeling very supported in the process! I basically would just be really grateful for bit of a handhold - it's feeling a bit lonely today.

Bumping....

Hi.

Do you medicate him on weekends to see the effectiveness for yourself?

We did XL for a week and went back to the fast acting. I personally don’t see much of difference with the fast but XL didn’t suit him. School were moaning on the XL for that week and ds mood swings were horrendous at home, meltdowns over absolutely anything every day. It affected his sleep more than the fast release and his eating was non existent.

With the XL CAMHS told me that the equasym XL is that what your on? 30% is released immediately and the other 70% later on. For ds school said it was like he was completely unmedicated on the slow release so we are back on normal one 3 x a day.

Our private psychiatrist put DS10 straight onto slow release ( after another psychiatrist attempted a disastrous trial of nonstimulant medication). 10mg had little effect and we found 20mg just helps him to focus and feel more emotionally in control. It’s not a miracle cure for him. He still struggles to keep his body still and sometimes chooses a little time in a quieter learning booth as the classroom gets overwhelming. But the school is very supportive. We only rarely notice a ‘comedown’, if somewhere really tricky, like the tube. Mostly I think the effects fade through the afternoon in school but it’s not highly noticeable. Slow release has worked very well for DS. He doesn’t eat much lunch at all, but scoffs it in the car on the way home. We sometimes use meds at weekends. Mostly if DS asks, when he knows he will need to focus on, say a golf lesson. Overall, a positive experience here. I hope it’s works well for you.

Ah, thanks both. It's just nice to hear from others in a similar position. Our follow-up appointment was literally a few minutes, despite having travelled a long way and paid a lot for it - it's not that I had specific questions that were unanswered, but there wasn't even an explanation like you've given of the 30/70 release, etc - I just feel v underinformed for something that's quite a big deal!

Yes, we're medicating every day, so I've been able to see the slow release in action for the first time this weekend. I found it a bit weird as there was a really obvious kick-in and wear-off with the quick acting, whereas it's harder to see with this type. He's also been waking incredibly early since the clock change, so is very tired, so it's all just quite hard to judge. But it definitely has a clear effect, and I checked in with his teacher after school and she said similar good effects on the slow release, so am hopeful it'll be OK.

I've had lots of experience with medical regimens with my other child, but psych meds is quite a tough one to get my head around - I felt awful, then really positive, then really wobbly again...I don't think it's helped by such a cursory approach from the psychiatrist, tbh!

It's really useful to hear quite diverse experiences - confirms it's very dependent on the individual, and worth just keeping an eye on how he seems. Thanks so much for sharing your experiences

DD is an adult, on slow release in the mornings. However, by about 5 pm,she is starting to get moody, stressed, noticeably more fidgety and emotionally hyperactive - she is waiting for an appointment with her psychiatrist to ask for a little top up dose of fast release to take at 5 pm, when she is on late shifts. Then, hopefully it will have worn off by bedtime!

That sounds very similar to our experiences here, Intercity! Interestingly, DS initially found the feeling of being medicated really disconcerting, but is now expressing interest in having a low dose for the evening. I see from t'internet that for some people, the methylphenidate actually helps them get to sleep, so they prefer to still have it in their system at bedtime...think DS might be like that, as he doesn't seem to experience any stimulant effects from it at all, but early days....

Thanks for sharing your experiences - hope an extra dose is useful for your DD

@danni0509 your comment has been particularly helpful as we're finding ourselves in exactly the same position - slow release is hardly having any effect! So think we're going to have switch back to the original meds.

@BabycakesMatlala we went back to fast release but he’s refusing to take his dose at school. (We crush it and add it into a drink) so he’s unmedicated most of the day now and school are not happy (he’s only there for 3.5 hours anyway!) Polava all this medication stuff isn’t it.

Oh no, @danni0509 - what a pain! Poor him; it's a lot to get used to (for all of us!). DS doesn't really like having to take his dose at school, as it feeds in yet more to the "feeling different", but he's clear he'd prefer to do that than carry on with these ones that aren't working so well. Quite stressful.... Really good luck to you, hope your DS can find a way to tolerate taking it 😁