support groups for children

Hi, does anyone know of any support groups for parents of children with Tourettes? or support groups for children themselves in the hampshire area? more specifically southampton/portsmouth areas?

18 Replies

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  • Hi

    I've had trouble finding a support group in my area, Essex, for parents of children.

    It's a real shame there isn't anything around. My daughter is 7 and a half

    and was diagnosed last year with Tourettes, but I havn't been able to find

    any support groups, and I don't know anyone else in the same position as us!

    Hope you are more successful in your search!

    Emma

  • Hi Emma

    I have a group start up meeting planned for Saturday 26th February 2011 in Essex - not sure of exact location as yet. You will be very welcome to attend this meeting and it will be a great chance to meet other parents and to learn more about setting up and running a future support group. Please email me with your details and to register for the meeting. Looking forward to meeting you.

    Julie

  • hi,im in essex and my 9 year old son has tourettes ,is the support team still running

  • Hi Emma,, I am in Essex too. 6 year old with Tourette's and ADHD would really like to talk with other people about this. Have not found any support groups yet for parents

  • Julie, the groups support officer will be able to tell you, she often checks out this site so I'm sure she'll be in touch soon to let you know.

  • Hi there

    So sorry that there isn't a support group in the South Hampshire area at the moment. This is something that we at Tourettes Action are hoping to address this year. I have had emails from a couple of other parents in the area, also seeking a support group and I would like to put you in touch with them and also to let you know a little about setting up a new group. Please send me an email and we can take it from there. groups@tourettes-action.org.uk

    Looking forward to hearing from you.

    Julie

  • hi jules,i too am looking for a support froup for children,my daughter is 9 but i am in lancashire.have you any ideas on support groups near me as i have no idea how to find out.even my gp couldnt help me.thankyou.

  • Hi there

    We have a few contacts in the Lancs area, do you want to send me an email and we can go from there groups@tourettes-action.org.uk

    Looking forward to hearing from you. All the best. Julie

  • Hi

    I also have a 9 year old daughter with tourettes, we live in Northern Ireland and I have been getting most of my support through reading stuff on the internet, I just wondered how well your daughter is coping and if the tourettes bothers her much. My daughter has went through lots of different tics from shoulder shrugging, neck movements, jumping 3 times in a row to vocal tics such as whistling, squeaking etc, it dosent bother her a lot at the minute which i am thankful of, but then again she is young with good friends.

    karen

  • hi Karen,

    i also have had to find out my info off the web as she was only diagnosed in august.my profile picture is of Joy.her tics are pretty mild compared to some and im hoping that they dont get any worse,she has head shakes,neck shrugs,eye rolls.if you try to speak to her she rolls her eyes into her head,its eery to see.she makes coughs,sniffs,mewls like a small cat.she bangs her legs and knees together,bruises are littered down her shins.she picks wallpaper in the bathroom,and not just a bit,it says joy 4 different times in pick marks as well as just holes.she went through a stage of giving herself a love bite on her upper arm but i caught her and she stopped it.shes just started with a new vocal,like a small er noise,sometimes she laugh tics at things that really arent funny,that one grates on my nerves i must admit :0(

    Joy doesnt really have any support,none of her friends from school have been told about her ts,i presumed the teacher would tell her class but she hasnt and im quite quiet and i keep myself to myself in public so i havent tried speaking to any of the parents of her friends about it.

    the tics dont really bother her,she says that she doesnt know she is doing them most of the time but i sometimes catch her holding her head or neck when she says it hurts.thats what breaks my heart most,that they can cause pain and theres nothing i can do about it...that and other peoples reactions to her.there was a girl on her desk last week "twitching her head".i wanted to go into school and rip her head off her shoulders i was so mad.

    i also took her back to the doctors a couple of weeks ago crying for him to offer me help and support to no avail,there is nothing he can do or noone to refer me to,but in the waiting room a woman across from me,spotted joy,and then noticed that i had seen her,when i caught her gaze i just smiled at the back of joys head and then smiled at the woman as if to say yes i know shes doing it,but shes ok,she cant help it.she didnt look across again.

    it sounds like you are getting good support and thats what matters,enough people around her that wont judge her and accept the girl under the ts,thats all i want for Joy

    :0)

    macalla x

  • Hi. I have a 15year old daughter who has been taking haloperidol 0.5mg 3 times a day for the last 3 years to treat severe motor and vocal tics from tourettes syndrome. She has had to have an urgent review today as her tics have intensified and the consultant has doubled her medication. She is upset that the tics have returned with a vengeance and it would be good if she could get some support from a group. However i dont know of a group running in the stoke on trent area. Does anyone else know of a group????

  • Hi Karen, there is a TA support group in Northern Ireland. Please email me if you would like to make contact with the coordinator. Best wishes to you and your family. groups@tourettes-action.org.uk

  • Hi Shell, there isn't a group in Stoke on Trent at the moment but there are groups you could access in the surrounding areas - TA Manchester and Nottingham and there is a lovely lady in Chester who is hoping to start a group. Please email me if you would like more information about how to contact these groups. I would also be happy to try to put you in touch with other local families, with their approval. Look forward to hearing from you. groups@tourettes-action.org.uk x

  • Jules

    Thanks, I just recently was aware of this group and we have been in touch. The next meeting is in March and we hope to attend, thanks for your help anyway.

    Karen

  • Good luck and best wishes.

  • Support groups seem to be sadly lacking in my area too. I live in Cambridge and my son feels so alone. He goes to a special school about an hour's drive from home and other than the contact he has with children at school has no friends at all. My heart breaks for him, I know he feels like he is the only person with TS and he is so desperate to make friends that he will try instigating conversation with strangers which is of course very worrying. I tried to take him to a little karate club that has just started in the village hall where I live but although he wanted to go he was quite anxious and ticcy and only managed ten minutes. Mind you that was five minutes more than I thought he would manage!

  • I'm so sorry i haven't replied before now, i completely forgot i had this account :/ i will send you my details Julie and yes it would be good to here from you :)

  • is there any support groups in manchester and is there anything specificaly for children :)

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