ADHD meds

[Helpneeded1995]

My child has a diagnosis of ASD and ADHD, they have an EHCP and a 1 to 1.
We didn't medicate to start with but now we are going to based on total disengagement with school work and the impulsive behaviour becoming unbearable for them and us.

I just wanted to hear genuine things about how medication helped or didnt?

And if your child struggled to take the medication how did you manage to give it to them?

I want what is best and I am a little apprehensive.
I also know that all people are different I just want to hear people's accounts of how it went for them or there child.

DD is on methylphenidate.

Near instantaneous positive results for us.

Took a while to get the dosage right. Much better on slow release and DD takes melatonin at night to get to sleep.

Biggest issues were a couple of hours a hell when the meds wore off every day and she was simultaneously starving, exhausted and hyper. It's got better with time. I would prefer not to have breaks at weekends and holidays as she's a much nicer, more cooperative child on them!

Hugely recommend getting a copy of 'The Parents Guide to ADHD Medication' - brilliant book and very useful.

Meds seem to work better in pure ADHD and less well in ASD/ADHD combo.

ETA: Never had a problem giving DD the meds, but she was 14. She manages them herself, I fill up a box with a week's worth on a Sunday night and she has a few instant release ones in case she needs a top up. School are happy for her to manage her medication herself. I do generally have to WhatsApp her to remind her to take them in the morning... executive function is not her strong suit.

Thank you for your honest insight, I know my child will defo not take the meds and I have been told I can put it on a spoon with soft foods (so it can go down in one and not chewed).
He is 9 but emotionally like a 3 year old, he won't even tolerate calpol.
We went for him to have all the checks today and will be getting the meds in a couple of days to start Monday.
The paediatrician said we could start before but she recommended to start then because in the unlikely event there was any side effects she would be contactable.

I didn't tell DD any of the possible side-effects and I asked her psychiatrist not to tell her either - she's suggestible and I wanted to know what the reality was.

It does massively affect appetite - they're not interested in food while they are working, and then ravenous when they wear off, so I would recommend stocking up on vaguely healthy snacks.

I did call a friend after the first 2 days and said that my daughter was now the child I'd always hoped for. On them she's just less impulsive, more rational, so much less argumentative and much more focused.

One of her teachers was shocked at the difference.

Even if it helps 20% I will take that, the paediatrician said it will take time to adjust them to the correct dose.
And she said to give him a big breakfast before meds and prepare for him being starving after they ware of.

He can only try them, can always stop them if they are doing more harm then good.
I haven't told him of any side effects as your right that it's best to know there are actual side effects rather then them worrying and manifesting them.

My 13 year old just started Guanfacine. It’s definitely helped with curbing the impulsive behaviors that got him into daily trouble. He is able to stop and think before saying or doing something. I can’t tell if it’s having an impact on focus on school as he was prescribed it 2 weeks before the end of term.

Thank you for sharing your childs experience, it does sound very positive.
I'm just scared there not going to work or worse he will have side effects.
But the way things are now is just not manageable, he is very part time at school and not doing any learning at all.

My only regret is that we didn’t get his diagnosis and meds sooner. We aren’t able to get methylphenidate prescribed due to his weight. This is supposed to be more effective for focus.

My sincere advice is to start the meds. If there are side effects, you can stop or try a different med/dosage. I read how life changing meds can be and I was terrified of side-effects/no effect. I’m glad we started.

Such a positive post, thank you.
We have his meds today methylphenidate, starting at 5mg but the paediatrician said we will prob have to up them.
We are starting them on Monday as we can contact his paediatrician quicker if any problems.

5mg instant is what we started on.

Then moved to 10mg instant, and then to 20mg extended release after 3 months. Now on 30mg extended release with 10mg instant top ups. Still nowhere near a high dose.

Start low and slow definitely a good plan.