Severe ADHD- how has your child changed as they get older

[veryconfused2]

My DS has severe combined type ADHD and aspergers. He is nearly 8 and on 55mg of short acting Ritalin a day. We are working with a behaviourist although it is very hard especially when he is unmedicated, especially first thing in the morning he can not take meds until 8am. His behaviourist says that unmedicated behavioural therapy is very difficult. For example, he has taken to hitting me when I take his DS off him and I am trying to do time out with him but getting him into time out is very difficult and getting him to sit still even more so and he will often hit me again then. However, he is not an angry child generally, more very playful.

I am getting increasingly worried that there is virtually nowhere to go now with the medications dosage wise and what will happen when he hits 60mg? Are there medication alternatives to Ritalin? We have tried long acting meds which did not seem to work. How many of you have had an 8 year old on such a high dose?

There is now a very real possibility I could end up as a single parent so I am stressing a lot about how these issues with my son will get as he gets older especially given that he will soon be pre teen/puberty and big. I just can't see what we will do medication wise. I would welcome any stories of people's experiences of severe ADHD and how it has changed over time in your child and what happened to the meds over time?

I am also very open to trying any other therapies in addition to Ritalin (but not instead of as he is impossible without it)

Dont have any advice but in similar boat.....hope someone comes along who can give you a bit of light at the end of the tunnel

There are alternatives, yes. DS1 has ADHD and ASD and takes atomoxetine, which is not a stimulant drug and doesn't have the issues with come down, each day. He has never taken ritalin or any other variants of methylphenidate because we (us and his psychiatrist) felt that the side effects would outweigh the benefits, given that he already suffers with anxiety and fluctuations in appetite and was already terrible in the evenings, when he was tired.

My DS with ADHD is now 24. As an 8 year old he was violent and we were so worried about how he'd be as an adult. As he got older and bigger they put him on different medications. Strattera, Concerta XT are the only 2 I can think of, and we had to keep upping the dose.

They do get better at dealing with situations and learning how to fit in. People meeting my DS now either love him or hate him and most spot instantly he isn't NT, but he's holding down a responsible job and living semi independently.

It is more than we dared hope for at the beginning.

DS2 is 11, with significant ADHD and Aspergers/ASD.

Takes 27 Concerta.

On meds: I think he has made a lot of progress. More socially appropriate, more responsive to consequences, etc.

Off meds: no change.

I went on a course called 'Managing behaviour in children with additional needs'. The support of the facilitators and other parents I met on that course has helped me get through the challenging times.

It's horrible if you feel that you're the only parent going through this.

I do find the mornings (pre-meds) challenging, especially with three other children to get ready for school. Sometimes I'm exhausted by 9am.

We have had limited sensory interventions but I am going to ask about the alert programme. He is sensory mainly he loves water and dust, dislikes wind and hand dryers and background noise he dislikes. He is very loud when hyper and will make lots of silly noises. Part of the problem is he finds this behaviour funny but can not stop himself.

I know shouting is bad and generally I avoid it but when he is really hyper, unless I shout he just will not listen to me.

He is very playful by nature and likes to play games like hiding under the duvet and chasing games but it gets very out of control when trying to get him dressed.

I am just worried that we will hit the end of the road with his Ritalin dose and be stuck as he is so hyper and his behaviourist says meds are a pre requisite to behaviour therapy being possible with him.

ThreeBee have you found your DS has got better with age and have you had to increase the dose a lot?