Tourettes Action

Daughter has ts

Why does it all take so long with geting your child the right help and seeing the right people.

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8 replies

    Seonaid
    Seonaid Tourettes Action

    Please do contact us at Tourettes Action - you can ring our Helpline.

    TS helpline: 0300 777 8427

    We have a list of consultants who your daughter can be referred to and it may be helpful to speak with someone on the helpline about getting the right help for your daughter? I hope this helps
    very best wishes

    Seonaid

    Kerriann
    Kerriann

    Thankyou I have done that all already.who is it down to who my daughter sees.we are not paying and it's on the nhs.i have got on to my doctor again.

    Seonaid
    Seonaid Tourettes Action

    I’m not sure which stage of diagnosis/referral your child is at so its difficult to be specific. You child may be referred to a number of experts such as a neurologist, a psychiatrist or an educational or clinical psychologist. But it would be best if they were referred on the NHS to a specialist consultant who is familiar with the diagnosis and treatment of TS. At Tourettes Action we have a list of specialist consultants across the UK who you can ask your GP to be referred to – do contact us if you want this and we can post or email it to you.
    It depends if there is a specialist consultant near you, if they see people on the NHS and how old your child is.
    Sometimes the process can seem slow but if you can visit your doctor (with the Tourettes Action consultants list?) and ask for referral to a specific consultant that might speed things up. You should make sure that they understand how difficult the situation is for you and your family. It can be frustrating and I am sorry you are experiencing difficulties.
    There is currently no single test for Tourette’s syndrome. A diagnosis can only be made by assessing your child’s symptoms to see whether they follow the pattern that is usually associated with the syndrome.
    A confident diagnosis of Tourette’s syndrome can usually be made if your:
    •child’s symptoms are not being caused by other medical conditions or any medication you are taking
    •child started having tics before 18 years of age
    •child has had several physical tics and at least one vocal tic
    •child’s tics occur many times during the day, virtually every day
    •child has been having tics for at least a year
    I hope some of this information is useful but I don’t know your situation.
    Very best wishes

    Seonaid

    Kerriann
    Kerriann

    My daughter is ok at school but at home she swears says rude things and words and says she wants to kill me shes 9 years old its geting worse

    Kerriann
    Kerriann

    Thankyou for all your kind words.my daughter saw a lady 2 years ago one up from a doctor and made out my daughter was just naughty and had my daughter in tears and was on about me having fits how do I cope with the children.cahms then wouldn't see my daughter and 2 other people would not see my daughter because of what the First Lady said so we were back forward to doctors then in the end last year in de ember she got seen at Nuffield hospital which is private but on the nhs and he gave her diagnosis of Tourette's syndrome then she got seen by a paediatrican up Ipswich hospital for blood tests and he can't do nothing and has wrote to camhs in feburary and we have heard nothing back also the man up Ipswich hosital was undermineing everything the other man said and we come away with nothing.he also was on the first lady's side makin out shes just naughty.can someone please help us as shes geting worse

    EsJaySea
    EsJaySea

    Hi Kerriann,
    We went through similar hoops with our son - GP refers to paediatrician who makes diagnosis. He refers to child development, she refers to CAMHS - who tell us that 'he doesn't meet their criteria'. That's it, brick wall. The sad truth is, if the provision of services in your area is poor then your GP will struggle to send her anywhere. We eventually paid for private CBT & assessment after getting nowhere. Must have spent about £1,500 in total over the years.
    My son also got much worse at 9 yrs - he did settle down again after about 4-5 months. He had another massive spike in tic frequency & severity at 12 yrs. He also developed OCD at that time. The good news is that he's now nearly 15 and most people don't even notice the tics, they've reduced so much.

    If you're not happy with the treatment (or lack of) she's received, try the contact details below. They've replaced PALS now that the PCT's have gone.

    03003 112233
    NHS England, PO Box 16738, Redditch B97 9PT
    england.contactus@nhs.net

    I know how hard & frustrating it is, and how upsetting. Have you tried a local support group?
    Best wishes, S

    Kerriann
    Kerriann

    Thanks for sharing that with me it's nice to no there are loads of other people out there too with the same thing.we have just had a letter from cahms saying they will be in touch.did anyone try and make you do a parenting thing as we never done ours as I didn't think we needed to.is your son on a tablets.the lack of help is not good

    EsJaySea
    EsJaySea

    Hi, we were never asked to do a parenting course - I didn't even know they existed!
    He is on 5mg Aripiprazole per day, but while I do think it's helping with the tics, his biggest improvement has been how he feels about himself. That really improved when he met some other children with TS.
    Good luck with Camhs. I suggest you write a timeline down; every tic she's ever had, which ones come & go, which ones stick around. Keep a tic diary; note down anything you think is a trigger, and the effect it's having on her life and your general family life.
    all the best.

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