On behalf of my daughter aged 11

My daughter was given a probable diagnosis by our GP of tourettes. she has always had tics both vocal and motor but tourettes never really occurred to me, i just thought she was a nervous person. Now i havent a clue what to do, she is very angry with me for taking her to the doctors and at the moment i am unlikely to be able to get her there again. She is about to move to high school this september. could just do with someone to talk to really that can help me understand what its like for her and how she may be feeling

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  • Hello Sarah

    If you visit the Tourettes Action website tourettes-action.org.uk on the left hand side you will see a button for the TA forum. If you join there you can chat to other mums and there is an area for your daughter to talk to other youngsters. You can also ring our helpline on 0300 777 8427 and we can send all sorts of useful info.

    You don't say if your GP has referred you to a specialist consultant, we have a list of specialists in the UK.

    Best wishes

    Suzanne

  • Have a look at the ist of local groups - tourettes-action.org.uk/gro... and if they have any junior members (the one I run in the West Midlands does) go along and meet up with some other parents/carers nd some other young people with TS, meeting others with TS most find extreamely helpful and liberating and I've made loads of good friends through TA. There is also a thread on the TA forum for kids of her age. I think her feeling angry is quite understandable, but she's probably more angry about the diagnosis rather than you.

  • Sorry, I've just realised that that last comment was a load of jibberish :( I blame the new meds and my dodgy old keyboard.

  • I recommend meeting up with local Tourettes Support Group. I have found so much support from other mums. You could go without your daughter. Also I have had a lot of support from the Tourettes Action Group. My son is 9 and has had a variety of tics (and other symptoms) for a few years - although I didnt know they were tics. He was very reassured by meeting other children and teenagers that have tics. I dont have a diagnosis yet because a GP sent us off on an ADHD tangent - which has been very distressing for me - but other mums have reassured me this is not unusual - and Tourettes Action have been helping me to find a way forward thru the minefield of the medical profession.

    My son is very laid back about his symptoms - he told me "this is the way I am Mum". But his father is very angry (lucky we are separated) and blaming me so I do understand how difficult this is for you.

  • My son, (yr 9, aged 13) also has TS & the one thing I wished I'd done before he started secondary school was contact their learning support team & talk them through things. The figure of 1 in 100 people suffers with TS is very misleading - he is the only one in a school of 1200. The resources on the Tourettes action website aimed at teachers are brilliant.

    He supressed a lot of the tics at school, so the staff weren't really aware how bad the tics could be at times & there were some issues with teasing, but that all stopped very quickly once the school were aware.

    But he has made a lot of friends, and so will your daughter.

    A useful book is 'Why do you do that?' by Uttom Chowdhury and Mary Robertson

    Good luck.

  • Thanks for that, i will go and talk to school i think, its just so difficult not knowing how it will go in the future and what effect trying to hide all the tics will do. Shes doing pretty well at primary school but secondary school is something else entirely. I will check out that book also, could be interesting

  • Have just had a look at 'why do you do that' on the internet, looks good and so have just bought it. Tried to talk to my daughter tonight but didnt get anywhere really so maybe this book might help

  • Our support group own a copy for any group members to borrow x We do have a few books and one dvd that are available to bowwow as buying a load of books can be costly. The "Tic-Talk" book is also good for KS2 kids.

  • Hi,

    I've just had an opportunity to read your comment and want to tell you that there are many fantastic professionals out there that can help. We live just outside the Nottinghamshire area and the tourettes care around there is brilliant. We have to travel for an hour by car to see our consultant but it is so worth it. The best favour you ever did your child was to start going to the doctor although you and she might not know that right now. The problem is not all doctors are as clued up to tourettes as they could be. My 11 year old son has been diagnosed with tourettes and autistic spectrum disorder in the last year and life has been a complete roller coaster. My local paediatricians have been pants, even citing money as a reason why they could not assess him properly but a locum referred us to Nottingham and it has been brilliant to have their support.

    Your child will be feeling possibly scared and frustrated, not knowing why her brain and body is not doing as it's told. She might be worried about what other people might think. Unfortunately the nearest person that she can express her frustration towards is you.Try not to take it personally. Luckily my son doesn't mind about the doctors but your daughter might resent the intervention. Just keep hard and fast to the knowledge that awareness about her condition will eventually help you and her. We are a year into my child's tourettes journey and we contantly feel as though we are on shifting sands. I don't think that will ever stop but there is support out there.

    Our 11 year old son too is going up to secondary school in September too. A year ago we thought he would be able to cope in mainstream education but it is apparent now that this is not the case. His educational statement is due out this week and we will need to get him into a special school for children with ASD and tourettes. His main worry about secondary is whether he will be accepted once people see his tourettes in action. He was so worried about making friends and still is.But many children with tourettes can cope in an ordinary secondary school. If you can help inform the staff as stated by another person who left a comment,this really helps. Tourettes action can advise on this and go and see your local education authority to help. Your childs present school will have a teacher designated to help children with additional needs. Even at this late stage you can contact them and help prepare for September. Your child's new school will have a change-over teacher to contact.Knowledge is power. We've avoided all bullying at our son's present primary school because we were able to talk to school and with our support they educated their pupils about Tourettes. Of course secondary will be different but we found that the bunch of 11 years old surrounding our son were very supportive of him when they understood what was going on. Teasing stopped.Your daughter will possibly just want to be part of a crowd and not want her tics noticed. This is what our son wants. (Apologies to any touretters out there who don't mind about their tics, I'm just saying what my son feels like)He asked his 1 to 1 teaching assistant the other day about why he had been picked out to have tourettes and that he hated having it. All you can do is keep trying to support your daughter and try to keep calm if she is being hostile. It must be hard for you though. You will be going round in a washing machine of 'Am I doing the right thing? What the hell should I do? How can I help?Did I say the right thig? Am I pushing too many buttons? Should I leave this alone? Am I doing too much? Am I doing enough?Why can't I fix this?' As parents, my husband and I have asked ourselves all these questions and more. I feel as a parent that I want to take everything off my child to make things 'better' but with tourettes it's not as simple as that. We have had to stand by and watch him suffer and at times this gets very hard. He too has many vocal and motor tics, routines and obsessive behaviours.I'm lucky that my hubby is fully supportive and along for the journey, but at times I feel very isolated because getting the care your child needs can be difficult. If she is hostile to seeing doctors, plough ahead anyway. You are doing the right thing seeking help. If her tics are fairly mild and don't need medication or too much intervention, still get to see a specialist because the consultants can explain what is going on and offer an arm of support. We have had a very positive experience after fighting the indifferance of our own local health authority. We were offered a specialist CAHMS trained habit reversal therapist on our first trip to Nottingham. These people have helped our son to know what is going on without patronising him. Your GP or local hospital might not have the specialist knowledge that you need. Tourettes Action have a list of all the specialists. Take this list along to see any people you are referred to and ask to see one of them if you are not satisfied with the care offered.

    Other people who have mentioned support groups are right I think. My husband and I are going to try to find a parent's support group near us just so we don't have to feel so isolated. I so hope you and your daughter have a better time of it soon. Best of luck.....

  • I too agree with getting the school involved as soon as possible. My son's school has been great and he now has the support of a Learning Support Teacher and the creation of an isp which will help to set up his transfer from primary school to secondary. Hopefully what we have in place now will make the transition easier when it comes.

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