First ADHD titration appointment

[chillberry]

DS12y has first ADHD meds appointment very soon. It will be with a prescribing nurse at camhs. Anything we should keep in mind or be asking? Which meds have worked for your child? DS has combined presentation and also ASD. I've heard everything from meds can be game changers to they can cause psychotic episodes, so it's a little daunting.

If they don't tell you, I think it is helpful to ask who you contact if there are side effects and medication needs changing.

DS2 (ADHD, awaiting ASD assessment and has some medical conditions) takes Atomoxetine.

There are hundreds of combinations of meds and my advice would be to be honest about how it's working, side effects etc. We persevered far too long with one that didn't suit DD because we felt it was better than nothing. We now have a combination of Guanfacine and Amphetamine (not Methamphetamine) and she's like a different child.

Good luck!

Thank you for your replies. It's helpful to know some specific meds that have been helpful. Good point about knowing who to contact if there are side effects or we need to change.

How many tries does it usually take to find the right one?

@PomPomChatton what were some of the indicators that the first med your child tried wasn't right? How long did you use it? How long did it take to know the right med was the right one?

Sorry if my questions sound very naive!

Some people hit the right medication first time. For others, it takes numerous tries.

DS2 tried two others before the one he is now on. One caused him to vomit. We quickly stopped that. One had no effect on his impulsiveness. We built the dose up, then gave it several weeks.

First one we tried made DD increasingly anxious until she was practically scared of her own shadow. She took it for years before I realised the correlation. Next one was a non-stimulant that made her fall asleep in class. We persevered for about a month as they said her body would get used to it. She didn't. And now we have a combination of low-ish doses of stimulant and non-stimulant.

The first ones they will probably try will work well for many people. You might get lucky.

We got lucky with the first ones - now on 3rd dose change and working well. 30mg Equasym (methylphenidate) plus 10mg top ups and melatonin 2.5mg.

What works for one child may not work for another.

Really recommend getting 'The Parent's Guide to ADHD Medications' and reading it before the appointment.

@PomPomChatton that must have been such a hard time for you and your DD. Glad you finally found a combination that seems to be working for her.

Thanks for all the advice, everyone. I'm nervous about this step and really hope we'll get lucky. DS is struggling to go to school these days and if he starts feeling ill from the meds, it will be even harder to get him to go.

I asked DD about side effects with hers. She said it's more effects when she doesn't take them - tends to get nasty headaches at the weekends especially after a dose increase.

And when they wear off after school we have weeks of her being simultaneously exhausted, hyper and starving until things settle down.

You also need to watch the brand.

Equasym has a 30% instant release and then 70% slow release, whereas Medikinet was developed for the German school day and so has a 50% instant and 50% slow release and means it seems to wear off a lot quicker.

We also found she needs top ups for evenings if she needs to particularly focus - and then Melatonin to be able to get to sleep.

The book I recommended covers all of this kind of detail and was incredibly useful.

Good luck. And keep us posted.

Thanks! First day of meds today. We're starting with 10mg methylphenidate short-release (Tranquilyn). DS didn't have any noticeable response. Does it take a few days to tell how well he'll tolerate it?

That's what we started with - only real effect was that it wears off quite fast and they're a bit cranky then, and DD got headaches at the weekends when she didn't take it. It did make a big difference from day one for us.

I told the psychiatrist not to tell her about any side effects as she's suggestible, and I knew she wouldn't read the leaflet or look on google, so she had no idea what side effects there could be.

He's taken it for a few days now, is it still going OK? Any noticeable changes (good or bad)?

@PomPomChatton Thanks for checking in. No clearly noticeable effects after the first week on 10mg. Maybe taking slightly longer to fall asleep at night but not every night. Our prescriber suggested adding an afternoon dose to see if that makes any difference.