Equasym Xl

[MissDuke]

I have posted many times over the last year about my 9 year old dd. To cut a long story short, she was referred to the ASD assessment clinic and they concluded that there is insufficient evidence to dx ASD, but confirmed ADHD in the meantime, with a view to reviewing at the ASC clinic if needed. Her paed and OT both believe she has ASD aswell, and cannot understand how she performed so well at the ASD assessment - the report from them portrays such a different child to how she presents everywhere else. I decided I was happy enough with the dx as her concentration issues are a huge problem, so I was glad we at least got a dx that should urge the school to help with the concentration issues. She has now been prescribed Equasym Xl by the paed and I am at a loss as to whether to give them. She said that they will most likely make it clearer whether or not she has ASD, I don't want to try them just for that reason. I am so nervous about all the side effects and the long term effects that may not yet be known about. It is such a hard decision. Please tell me your experiences of meds, I need to know if it is worth trying. Thanks x

hi my son takes this medication - he was dx with adhd and once medicated his asd came shining through as before all everyone could see was the hyperactivity, once that settled it was clear he had asd as well and was then dx about a year later. he has been fine on the medication and we have had so far not had any side effects

My dd aged 8 had equasym for her ADHD. I have to say medicating her has made her ASD symptoms much more obvious.

However, it has also stopped her chronic school refusal in its tracks and the severe anxiety that was crippling her and making family life miserable disappeared almost overnight. She is now able to concentrate on her school work and various therapies and suddenly they are all working. Her reading age has gained more than 2 years in 12 months, she is involved and included in Netball matches for her school and she has managed to catch up academically. She is happy and in control of her life.

We have few side affects as long as she takes it every day. If she doesn't it can affect her sleep and she is very tearful and anxious again on the days she is not medicated. She has lost some weight which she could Ill afford to do but she is slowly regaining it now.

I understand the hesitation to medicate and we tried all sorts of other strategies before using it. However to us medication was an absolute life saver and I wouldn't think twice about doing it again.

Remember, even if you try it you are not committed to it. You can stop whenever you want to. And you won't know if it will help until you try it sadly. Even if it does make the ASD more obvious, surely that is a good thing, as the prognosis for undiagnosed ASD girls is not good.

Thankyou so much for the positive stories. I have googled and found mainly negative things, so it is fantastic to read positive stories. It is interesting that you both saw the ASD more after medicating. Although I wouldn't medicate JUST to see if she has ASD, it certainly could be an interesting outcome. I didn't word that bit well in my op, and it reads like I don't want to medicate for that reason, but I really meant I wouldn't medicate JUST to see if the ASD becomes more clear, it would be for different reasons really. You make a very good point about the dangers of undiagnosed ASD. I lost my fight a bit for a while there, I guess I do need to keep trying for the ASD diagnosis, given that her teacher, OT and paed all think she is on the spectrum.

It's very hard getting girls diagnosed I think. We certainly found it hard to get both the ADHD and ASD diagnosed.

Eventually we found our way through to a CAMHS psychiatrist who diagnosed ADHD and prescribed medication. We then took DD to Daphne Keen for a private ASD diagnosis as we had spent a year looking for a diagnosis under the NHS and hadn't even got properly referred.

Keep going, especially if you have other professionals supporting you. Someone just needs to listen to them.

when my son was dx with the adhd we asked again about asd and was assured no. we then moved and he changed schools - first day of new school they called me in to question asd - cue then an assessment for asd - the camhs person saw him on and off medication and the difference was staggering as off the medication he was literally bouncing of the walls! fast forward 2 years and he is now in a specialist independent asd school! and now when I say to people there was a time people thought he had no asd people simply don't believe me! he did also have some issue with losing weight but he was given milkshakes to help him and now he no longer takes them and his weight is okay but that side of things will be monitored

Ds2 takes this. We tried two other medications first, but this was the one he settled on. It was not an easy decision, but it was one of the best decisions we have made for him so far in his 11 years.

It enabled him to cope and be happy at a primary school he loved, and is now enabling him to cope and stay at a secondary school he loves even more. On the rare occasions we forget to give it to him, the difference is very obvious.

As well as treating his ADHD immediately, it has helped with his Aspergers in the longer term too.

Just wanted to add that the Aspergers only got picked up and diagnosed once he was medicated. The ADHD was impairing his functioning so much that it masked the Aspergers.

Side effects: loss of appetite at lunchtime, but this has improved with time.

Thank you so so so much everyone, I really appreciate you taking the time to reply. I am already feeling much happier about this. It is so good to see that it is has helped so many.