ADHD meds- do we stop them?

[popgoestheweezel]

Ds has been on a trial of methylphenidate for 4 weeks now. He started on 2.5mg twice a day for the first week. Went up to 5mg twice a day for the second. He was excluded from school for scratching another child's face at lunchtime and it looked as though he was having difficulties when the first dose wore off (and school were vague about timing for his second dose) so he was put on slow release concerta xl 18mg (no need for dose during school). However, on Friday he twisted another child's finger at break and then at lunchtime punched another child twice (resulting in a black eye). Dr has now put him up to 27mg concerta xl. He took that for the first time yesterday and was fine until the evening when he was terrible, screaming at dd whenever she said anything, being totally unreasonable, throwing stuff, etc etc. At bedtime he had a meltdown and when he eventually calmed down told me that it had been the 'worst evening ever. I feel really confused. I don't even know what I'm doing'
So, it seems that the come down from the meds is worse than his 'normal' behaviour. At first we did think there was a slight positive effect but of course, there was an outburst every time it wore off. Will this even out in time and he'll adjust to it or do we give up on this now?
It feels a bit like the dr is just piling bigger doses on him without it having a real benefit....

Shameless bump here.
Ds has just given dd yet another nosebleed over Sunday lunch- we can't endure this any longer...

I know lots of people who swear by the meds (esp strattera taken at night) but must admit we had to take ds off them after trying several different doses and combos over a couple of months, as his behaviour crashed and burned and actually he became quite odd - almost more autistic, strangely. The theory was that only certain ADHD brain chemistry responds well to the drugs, while DS has a hyperactivity borne more out of his autism than ADHD per se

Maybe that's whats happening here then. I had previously thought that all ds' behaviours were down to the impulsivity and lability of mood that are typical of pda but dr thought that as that had not responded enough to the modifications they had made at school then there must be more underlying it.
We have been trying to track it but there always seem to be other factors involved that muddy the waters. Of course, he started on a very low dose so we didn't expect much impact but did and do see some better concentration and quietness but that seems to be bought at the expense of later meltdowns- not really worth it.
It doesn't help that I'm very busy at work right now so haven't had the mental energy I've needed for this challenge. I'm just feeling very very tired and low right now and no idea which way to turn.
Tomorrow we will try to speak to school about the aggression towards other children. Then i have arranged to look round an independent special school in the afternoon then cranial osteopathy later on- god only knows how I am supposed to fit work and dd (and dh and myself) around this!

Yes i did find we got 2 hours calm but the payback was 8 hours v odd behaviour

ABA helped with the aggression though

Yeah, two hours calm followed by 8 of aggression sounds about what we're getting here.
How did you use ABA for the aggression? It's always something I've never really understood how we could use with the PDA.

My boy is autistic, not PDA, but for aggression I used consequences (eg he learns that hitting his sister would give him a result he didn't like). Actually now it is my angry face and raised voice he responds to , but it is different for every child. When my nf DD misbehaves, I tell her I will confiscate the SIM from her beloved phone for a week. The main thing is that it has to be every time, and something which makes him think about doing it again.

It does sound very difficult for you all, and I agree I think the prescriber needs to be consulted, - probably soon.
It sounds like your ds feels different on the medication and not in a good way! Ds had trouble with the inconsistency of the ups and downs of immediate release methylphenidate, so we stopped for a couple of years before trying extended release that worked better for him but certainly his autism became much clearer! The other thing that was quite noticeable was that ds had much better coordination and motor planning whilst on medication and his ability to say drink without spilling, or turn a page without tearing, quite suddenly deteriorated as the medication wore off which was very frustrating and confusing for him and people around him! I think too his tolerance to frustration would also suddenly disappear! All that change and loss of control must have been very difficult, for a child for whom feeling in control was so important. Ds is more aware and sensitive on medication ( he has ADHD, LD and autism) - which is not always an easy thing for him. He can be very blasé and unaware of his affects on others without medication!!
Would it help to work out if there is any pattern to the aggressive behaviours? Are there common times of day or activities where problems occur?

After talking to an adhd charity I feel a lot better. They told me that this does happen and there can be this period of upheaval initially.
Ds is responding to the meds in the morning for a good couple of hours which shows that it is effective for him. So, apparently we just have to get through this bit and with trial and error we will find the right dose and delivery for him. I am pleased to hear that there is still hope as it was all but extinguished this weekend. Hope springs eternal!

If the aggressive come down continues, then tell your prescriber you want to try something different. Strattera is not a stimulant and is long acting, so doesn't have the come down issues that methylphenidate can have. DS1 was put straight onto that by his psych, as evenings were already a flashpoint and his sleep was already elusive, in the evenings, plus he regularly missed meals as a result of his anxiety. We did not want to try anything that has all that as a side effect.

He's been on Strattera for 3 years now. Occasionally, we wonder if it is working, then he has a massive growth spurt and we realise that it was working, because all the really extreme impulsive behaviour we'd put to the back of our minds comes back. He still behaves like a boy with ADHD, when it's working, but he communicates a lot better and is better able to keep a lid on it all.