mediknet......with adhd and AS.....advice and experiences please!

[LilTreacle]

Ds has started on mediknet 10mg since saturday after an introductory week of 5mg
He seems to be less physically active but no effect on mood or level of calmness.
AS traits seem much more apparent or worse....anxiety and anger getting to point that school have asked for him to be collected twice in the last 2 weeks, working with him outside the classroom for the safety of all etc
been ok with those interventions until today.....been brilliant all week, and then today blew up several times.

School anxiety seems much worse now, which could just be the crazy schedule changing time of year it is, or that he is not getting on with the ta, finding the big class too much.....

dont really know what I am asking......just very confused and not sure what to do.......I want to take the stress away, but dont know what it is that he is stressing about exactly...he rushes into school, is pleased to be there, loves playing with his classmates, cried when having to leave, but he just ant cope all day every dayhen he is there.

bah....why isnt it christmas holidays already.

VERY similar experience here. My ds started on Methyphenidate trial at the end of sept. He also began with 2.5mg of medikinet twice a day (after a week it went up to 5mg x 2) and we also saw some out of character explosiveness. Although he is explosive and very quick to anger usually, this was different in that there wasn't any apparent trigger e.g. shouting 'everybody be quiet now!' when no one was making any noise.
However, he was also showing a few signs of benefitting from the meds in that he was also having periods of calm, quiet and clarity.
After a disastrous day at school where he was excluded for a lunchtime 'incident' he was moved onto concerta XL 18mg to start and then after a while onto 27 mg. This was when we started to see real benefits in his behaviour throughout the day but he was going to sleep still very late (bedtime has always been 8pm, but sleep time was moving from 10pm to midnight). So they moved him to 20mg of equasym xl which helped sleep time but the 'issues' cropped up again. Last saturday he upped to 30mg equasym and things look much better so far.
I spoke to someone at a local adhd charity and they told me that this was often the case and some children do have a lot of settling issues before finding the right level for them.

Thanks. Maybe this particular drug is not right for him over all.

You say "he has been brilliant all week" and is "less physically active" so is he showing some small improvements at some points compared to how he was without medication? Remember, they start dc off on very small doses in case of side effects so you wouldn't expect to see huge improvements in behaviour on this low dose. If you can see some small signs of benefit I would suggest you hang on in there and see if things settle down, there are several different brands/doses to try.

It took us two years to optimise medication for ds but he still has difficulties, and I still reckon he'd never cope in school (he's home educated), but he's a lot better than he used to be.

Immediate release methylphenidate works best for him - on slow release he was worse than unmedicated so we switched back. He now takes 35mg over the course of the day, plus 40mg atomoxetine (Strattera) daily, and this seems to be reasonable for him.

I have always found it difficult to work out which part of ds's presentation is from AS/ADHD, which is hormonal, and which is a drug response. The days are never sufficiently consistent to judge but generally I reckon it's a combination of all three.

Medikinet had no effect whatsoever for ds, and of all the generic versions of methylphenidate, branded Ritalin was the best. Everyone responds to the drugs in different ways so you'll just have to jiggle about a bit till you get it as right as you can.

When DS2 started methylphenidate, the AS symptoms seemed more apparent because the medication was treating the ADHD, so just the AS was left, if you see what I mean.

Three years later, his difficulties from the AS are much less than they were. This could be an effect of development & maturity, but I believe that the methylphenidate enables him to observe neurotypical behaviour and emulate social appropriateness.

We had to try a couple of different formulations before we found one that suited him best.

Thanks everyone.
I think its so hard to know whether its helping much as this term is such a challenge. Ds started ina new school in sept and was just settling when christmas fever started so its hard to know whether the meds are having any impact or if ds would be much worse in these circumstances without it.

the as side does definately seem to be in the forefront at the moment...anxiety being the most observable behaviour rather than hyperactivity and inattentiveness.

we shall persevere thriugh the holiday and see where we are in acouple of weeks.

The last part of the Autumn Term in primary school can be extremely stressful for children with AS. The timetable and routine they rely on are often half abandoned.

Time of year is a bit of a prob....cant be sure the anxirty is not just the christmas fun and exciting changes to schedule, still in transition so very unsure and then the meds too......will just have to keep and eye on it. Thanks..for all the replies

Personally I wouldn't consider any changes until things settle down again in January. You'll be better placed then to know how much of it is down to changes in structure. Realistically you may not be in a position to judge until late Jan.

CAMHs advised exactly the same thing *Streaky
Have a proper rest and recuperate from the madness of Christmas and see how things develop in teh new year.
Thanks for your replies.