A diagnosis or not a diagnosis?

My son was referred to Cahms in the summer and was assessed by a pysch nurse who wrote he meets the criteria for a diagnosis of tourettes. I now realise he has had ts forever and he is not that fussed now he nows what it is. He can suppress it doing school lessons but otherwise tics every day virtually all day. Has he been diagnosed officially, if not should I push it and if I do will he get some offer of therapy/med? Also later on he wont be able to cope sitting in an exam hall in silence. Forgot to mention he is already under a paediatrician for sld and sensory difficulties which means he has melatonin prescribed to help him sleep.

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  • HI there

    Your son seems to cope remarkably well which is excellent, but it is worth pushing for a proper diagnosis so that if there is a potential treatment he could be assessed for it and of course with exam dispensations getting more difficult it is good to have proof of need. Do visit the Tourettes Action website, where you will find lots of info and a chance to join our chat forum as well.

    Best wishes

    Suzanne

  • Hello,

    Great to see that your son is relaxed about his TS. As a parent of a child diagnosed with TS just over a year ago, I would say that to go further and have him fully assessed by a Tourettes specialist/ consultant would be a very positive step. This can be done through your GP or through your paediatrician. Tourettes Action has an excellent helpline and they could give you really sensible advice and a list of all the specialists in your area. They did this for me and I found this to be most helpful. They also have help online.

    Take the name and location of the specialist that you would like your child to see along to your doc's or paediatrician's appointment and it leaves them less room to fluff around and say no. Some health authorities seem happy to say that you have one diagnosis and should concentrate on that, rather than fully assessing your child's needs.My health authority refused to assess my child for autism (even though his Tourettes specialist said it was necessary), stating that redundancies and budget cuts made it not possible and to concentrate on teating his TS. What a lot of rubbish! It turned out that he was on the autism spectrum and this has an impact on how his Tourettes is treated. His TS specialist's department eventually stepped in and assessed him. If they try to say no, keep pushing, using what your CAMHS nurse said as extra leverage.

    You are correct to think about the future of your child at school. Having a seperate room to take exams in can be just the tip of the iceberg as to what your child's needs might be in the coming years. A full diagnosis can help your child's school get the correct information as to what your child needs from day to day. They can set up systems to help your child discreetly leave the classroom to tic, for example, if they feel they need to. My child had a special room he could go to at his primary school, although you say your child doesn't tic at school. There are all sorts of things school can do to help your child feel more relaxed on a daily basis.

    When my son went to see the specialist, he was offered habit reversal therapy straight away and is now on medication to help the massive amount of tics he has. The specialist will tailor the type of treatment your child has to their particular needs and will also take into account any additional conditions he or she has and any medication they are on.Some people don't need medication at all. I found that their help was invaluable, and heartily recommend you seek out a full diagnosis.

    I wish you the best of luck!

  • thanks for your response, my son does tic between lessons and has a card to leave a lesson to tic if necessary. I think I will try for a 'proper' diagnosis. He is relaxed at home and has told his friends who just said either thought so or that explains a lot and left it at that, so I think he is lucky his friends are understanding.

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