my daughter hassuffered with tics like the stretching of her neck and coughing and clearing her throat could it be tourettes syndrome?

she hoards things and her development is belosw average for her age she is eight years old and the consultant have done blood tests and mri scans and found nothing wrong with her. She gets very tired easily and crashes the doc tors dont know what is wrong with her

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  • It is possible that she has TS but you must get a referral to a TS specialist for a diagnosis. You can request a list of TS specialists from thr Tourettes Action website. Good luck x

  • Hi m'dear,

    I can only echo what taffy222 has said. You will possibly need to insist to your GP that you are referred to a Tourettes specialist/consultant. It's good that tests have already been carried out, but I found it quite amazing in our case, how so many GPs and some experts have limited experience or knowledge of Tourettes. Care in certain parts of the country can be very patchy or just awful. In other areas it is superb. We had to travel to find my son's expert on TS, but by golly it was worth the trip!

    Look at the list of TS experts on the Tourettes Action website, or in the leaflets they supply, as taffy222 suggested and choose the one that you feel is right for you or nearest to your area. Go armed with the name of your chosen expert/specialist/consultant, address and phone number to your GP or paediatrician and state (not ask) that you want your child referred there. Be prepared to be firm but nice and to go back again and again! Give them the name, address and number and they are far less able to fudge around because they might not meet TS very often and have to research where to refer your child to. Ask for a specialist instead of a referral to CAMHS (who are lovely but admitted to us that they weren't really there to treat Tourettes, but only there if our child ever became anxious or depressed as a result of having Tourettes, which luckily he isn't!) I speak of this through bitter experience. The care our son receives now is fantastic, but at the beginning the care he received (or lack of it) from our local health authority, was apalling. We had to travel out of our local area but were offered the best of advice and care, plus Habit Reversal Therapy from a fantastic (CAMHS trained) therapist.

    (If you live anywhere near the Nottingham area, Professor Chris Hollis's Tourettes specialist team at Queens Hospital in Nottingham are brilliant)

    Another thing you could do is enlist the help of your child's school. Speak to your child's teacher/head teacher and the SENCO (special educational needs co-ordinator). Ask what is going on at school and if your child needs to see an educational psychologist. Sounds scary but isn't. Ed Psych's are a real lifeline when you are trying to get your child diagnosed and any extra help your daughter may need at school. They don't snoop on your home life and our son's EP helped when were were going through the process of getting him a Statement of Educational needs, and eventually a place in a special needs school. Our child is intelligent but was academically way behind his peers in year 6, and at one point his tics were so bad that he had to be disapplied from SAT's and the mainstream curriculum, which he found hard to access. We worked shoulder to shoulder with the school who also, with our permission, explained to the other children in his class what was happening to him which resulted in no bullying at all. When everyone sings from the same hymn sheet it makes life a lot easier!

    Another tip is to keep a file with all the letters/observations/consultant/specialist diagnosis sheets/comments and observations of teachers etc. in one place, and drag this file around to every meeting you have about your child, be it medical or educational or any thing else. It is quite amazing again how all the different agencies have little or no communication with each other and do not receive the documentation from each other. At every single meeting we have gone to, the relevant details have been photocopied by the people we have gone to see, which helps them make a really fully informed diagnosis and that you are not just a pushy parent. We have even prepared photocopies occasionally to shove under people's noses if they needed them quickly in a short meeting where specialist time is precious. Sounds really full on but all the people we have gone to see have been pleased to have these details.

    We also found that our son suppressed most of his tics for a while when meeting specialists, which is all well and good but a bit naff when you are trying to get your child help! The extra info from teachers, kids club, the educational psych and the paediatricians in the file we took along, proved invaluable when he didn't tic much during the meetings.Some of the parents from our Tourettes support group also found their children did the same thing during meetings, so they took along film recordings of their child ticcing/ tic routines and habits to illustrate the symptoms their child was exhibiting. Write a comprehensive list of all your daughter's tics, habits, or any obsessions or obsessive routines she might have, and record any new ones as they surface. Again, this list proved invaluable when we first went to see the specialist. The more info you have the better.

    Before you go to see the specialist write everything you want to say down as well as any info you have. I'd written down lots of stuff but my brain turned to mush when asked about our child's early development. We didn't take his baby/ toddler development records along and I really struggled to pin down details of exact times of things such as when he walked/talked

    etc. Think of when your child's first symptoms appeared and what you noticed when these happened. Get your child's school to write down their observations, even if they have no other outside agencies involved in your daughter's education at the moment. It just gives more weight to your own observations and less grey areas for you to worry about.

    I seem to have written an essay as usual, but I hate to think of anyone out there struggling to get the care their child needs. Everything I have suggested has just come from our own experience of when our now 11 year old was diagnosed with Tourettes just over a year ago. It is quite shocking how some parents have to struggle to get help. We received no help at all from our local health authority. Indeed, there was little help to be had. Our son needed additional tests but where we live, they cited budget cuts and redundancies as an excuse not to give him a full diagnosis!!!! Luckily a locum paediatrician referred him to Nottingham when we informed him we would be prepared to travel, and the rest is history. We were only out on our own for a few months before we got the help, but we have heard of other people having to struggle for years. How sad that is. Hopefully your health authority is switched on. At least they have been thorough with some other forms of testing, even though it didn't give you any conclusions.

    I hope you find something useful out of all my waffling on. Best of luck! Let us know how you get on via this forum if you like. I like happy endings! xxx

    PS. You can ring Tourettes Action to chat and to get advice. They are fab and can remind you that you are not alone in all this. xx

  • Hi, I agree with everyones comments its always important to speak with a professional. I was diagnosed with Tourettes at the age of 8 and honestly, the streching of the neck and clearing my throat was 2 of the many habits that I had. I wish you and your family the best of luck.

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