Formal Diagnosis of Tourettes and ADHD

[Kath1973]

Have just had the formal diagnosis for my DS - he is 6 and has Tourettes Syndrom and ADHD - not really sure where to go from here - should I go forward for a Statement at school - his school have been very supportive but am not sure where to start now

I know I need extra help for him as his learning is far behind his peers - am waiting for the confirmation letter from the Paediatrician then have to go down to the doctors to get the medication for him - am pleased we have the diagnosis but feeling a little daunted by everything - any advice greatly received thanks

My son's got ASD (high functioning) and additionally from last Oct, OCD with Tourettes verbal tics. No swearing but just shouts out sentences and it's beyond his control. I have to say, the ASD was tough, the OCD a bit scary but the Tourettes is dreadful because he now stands out so, and people stare etc and think he's just.....well, very odd.

We have a Statement. Have had since 2008. So many people said "you don't need it, you will not get one but I applied and have to say, it has proved invaluable. Please apply. It's good that your son is at a supportive school but as time goes on he may require more help/assistance and the Statement may help to get him into a more appropriate school for his needs come secondary, when the times comes.

There's not much out there in terms of support for Tourettes and it can be very isolating. My son's starting medication on Saturday this week. I have to say, I am not keen on the idea but he's just so poorly with it all that I have agreed for us to give it a go.

It's all very scary. I feel for you.

He's 10, BTW.

I agree Tourettes is the most distressing for my son he has motor tics and vocal tics - thankfully he doesn't have the swearing side, but has little noises that he makes constantly and head nods that just happen and cause him discomfort - we have just had the formal diagnosis and am waiting for the letter confirming this before I can go and get his medication sorted - the doctor thinks the first thing to try to sort out with medication is the Tourettes as it is the thing that is upsetting my son most.

Thankfully he doesn't seem to be picked on that much but there are a few kids that seem to push him around a bit - my son doesn't consider what they are doing is wrong and doesn't stop them - so we often get him coming home with mud in his ear where he has let these kids put it in there !!! I try to get through to him that this isn't acceptable for them to do this but the school haven't been able to get to the bottom of who is doing it.

Thank you so much for your support - I went to an ADHD support group today and there was a lady there speaking about the help they can offer regarding Statements and Statutory Assessments and it was really helpful - am definitely going to look at getting this in place for him now - as heard lots of stories from others who left it for years and are now having so much trouble getting the Statement and help in place.

I hope the medication your son is taking helps him out. I am hoping it will help my son - I agree I don't like the idea of having to medicate my son but he is distressed so am hoping I am doing the right thing for him

Oh dear, that's not good, is it? School ought to be sorting that out, immediately. I'd be terribly upset, as I'm sure you are.

Went to get the tablets today but there was confusion over the dosage at the pharmacy so, we are delayed by a day. Sounds like we're in the same boat, Kath. I feel really nervous giving him meds but know that if it helps, it'll be worth it.

My ds makes little growling noises WHEN HE'S TRYING HARD NOT TO SAY SOMETHING so, it kind of defeats the object. I was a single mum for 4 years and am now remarried to a lovely man but, my ds didn't have all these things when we were first married. I feel it's a very big ask sometimes.....and I know my DH finds it wearing (as do I!).

We just keep plodding on as best we can....

I must admit it does upset me when the school seem to not be in control of the situation - although at the minute my son doesn't seem to be too upset over it although it could all be inside and not showing me that he is upset about things.

I am still waiting for the letter from the paediatrician so that I can go and get the meds sorted - I am like you have heard good and bad stories regarding medication so it has been a tough decision to go down that road.

My little boy makes growling noises too and a persistent cough that is not quite a cough just like he is clearing his throat - he tells me that he has rocks in his belly and he is trying to get rid of them when I ask him what the matter is.

I am happy you have found someone to support you - it is definitely not easy to do it on your own - that is the one thing that I think will be a tough ask for anyone - but if I find someone who is willing to take on both of us then he will be a special person - I hope there are some out there as I hope I am not single for ever lol x

Keep strong - I hope the meds work well x