Hi i am new here my son is 9 an has had tics for quite some time now!! He can get up tp 4 at 1 time, Do i need to go to the docs to confirm

That he has tourettes? Does he actually have Tourettes? head jerking, eye flickers, where his eyes look up an head nods at same time, humming, and grunting.

He also has quite bad behaviour problems, he is very violent towards his brother, also gets very angry and cannot control himself. Upto a few years ago he use to poo himself an say he cant hold it in, he is also a compulsive liar, i jus dnt no what to do now which way to go so any advice would be so helpfull!

Thank you for reading

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  • It sounds very much like he does have TS, if you are in the UK the first person you would need to see would be your GP, firstly have a look at some of the info on the Tourettes Action website and compare with your son's tics and take the list with you, if he tends to supress in public prehaps film him on your mobile for your GP to see. Your GP then should refer you to either your local CAMHS (child and adolescent mental health service) or to a child neurologist. Also TA have a list of consultants in the uk. tourettes-action.org.uk/

  • I would definitely go to my GP and get a referral straight away. It is important for your son to have a diagnosis so that he gets all the help and support that he may need from his school. I know from experience that schools are not always willing to give any extra help without a diagnosis. It is also important that you get a diagnosis in place for when he starts comprehensive school as he may need extra help and support during exams. Some children are able to take exams in a separate room so as not to disrupt others also taking exams. A diagnosis is telling people that he has a diagnosis of TS and not just being naughty and doing these tics on purpose to upset the class. Good luck and keep in touch x

  • Thank you for the advice, we have actually been referd to CAMHS but they said theres nothing they can do for the tics also we went for his behaviour and they said cuz he was playing fine with his brother at the time that we needed parenting classes to help with his anger an how to deal with him.

    Theres loads a things that i have forgot to mection some being he likes to hoard stuff he puts things under his pillow, has little obcessions for a short space of time, and he just wants to ask questions.

    Also when we did attend CAHMS the school told us that they cant deal with my son at school as he is under CAHMS, i thought it was wrong as are they not suppoose to work together esp if he needs help in school which he does as he is behind at school.

    Its really hard coping with him at times as he likes to push your buttons Oh yes also another thing he doesnt seem to have any remorse or feel bad about what he has done to me or his dad or his brother, he doesnt seem to have a sence of feelings if you no what i mean?!

    I will let you no how we get on an whats happening

    Thank you for your time and advice :)

    X

  • Hi,

    We hear yet again of a case where you have to struggle for the help you need. Catherinem speaks a lot of good sense and you could get in touch with Tourettes Action and look at all their material. I found that when we were at the beginning of the often bewildering process of getting a referral for our son, TA were like a light in the dark with an additional Satnav attached!

    Please pop along to your doctor and insist on seeing a community paediatrician with your child if he already hasn't seen one. Don't take no for an answer if that is what you want, 'cos sometimes you can be fobbed off.We saw a community paediatrician with our son, then 10, before we were referred anywhere near CAMHS (CAMHS later told us that they didn't really cover treatment of Tourettes, only if our son became depressed or anxious etc because of Tourettes. He currently is signed off their register).

    When you go to see the paediatrician, go along with the names of the consultant/s and locations of the hospital/s you would like to be referred to.(Tourettes Action also have all the names of specialists/locations of hospitals) And be prepared to travel if you can. Quality of care in different areas can be patchy. Again, insist you want a referral to a specialist and if they are not forthcoming, sweetly offer the name of one or two you have found out about.(We were lucky, as the paediatrician wanted our son to be seen by a specialist)

    As well as Tourettes, it might be worth asking to see if he can be screened for Obsessive compulsive disorder and also Autistic Spectrum Disorder as well, as you talk about lack of empathy.

    The community paediatrician will ask lots of questions about what YOU think is going on with your child and this will be taken into account and recorded. If you can write down a record, before you go, with dates if you can, of symptoms,tics, obsessions, habits, routines etc and when they emerged, this would be very handy. We went along with all of his tics and obsessions etc, but didn't expect past history questions right back to baby milestones. I found my brain turned to mush and had to struggle to remember! We take a folder with all the letters and observations from every specialist/agency/teacher/doctor etc to every meeting. It's amazing how much time this saves as the docs don't get to see the material from different agencies, as they often don't communicate with each other. This tends to speed things along and every time we have been asked if they can have copies. We even photocopy extras to hand to specialists so that everything we are saying is backed up by other professionals at the appointments we are attending.

    Explain to your son's school about what is going on when you have been to see your GP, and that you are being referred to the paediatrician on the road to get a possible diagnosis for Tourettes. Try to talk to the School's SENCO (Jargon Alert!! -special educational needs co-ordinator) about what is going on, and what provision they can make for your son. My son's school bent over backwards to help even before we got a diagnosis. Drop in casually the words 'duty of care' which makes people sit up and take notice and that you mean business. Your son's school do indeed have a duty of care to your child. If you don't feel comfortable talking to the school without a bit of preperation, contact your local education authority. Ask to make an appointment to see someone from the special educational needs department to talk about what your child's rights are and ask what you can do to help your child's school. You don't have to complain about his school. Just make it a general enquiry about how you can help the school, what questions you could ask, and what type of care is available. These people aren't scary and can be very helpful. Budgets are tight with staffing, but even a supportive awareness from his teachers of what your son needs is a comforting step forward.

    At this point I will throw something else into the soup of information, but when I was struggling to get a referral for my son from my GP(he was later diagnosed with Tourettes and Autistic Spectrum disorder), I didn't know that the SENCO teacher at my son's school could also refer to the community paediatrician. Every school has a SENCO. The interesting thing is that she wasn't aware that she was allowed to refer either. SENCO's CAN and if I had known this at the time, we could have saved 6 months of wrangling with our GP. Just a thought. If one road proves annoyingly unsupportive, you can always go down another to get the golden referral. The GP road is simpler though, if they are supportive.

    You don't say whether your child has been seen by an educational psychologist (JARGON ALERT 2 !!! - Ed Psych) at school. If he hasn't, rush along and ask his teacher, SENCO and headteacher to do this as soon as possible if this is right for him. I thought this sounded scary, but the support and observation skills of these professionals was invaluable when we were getting the care in school our son needed. Again, they will chat to you and observe your son in school. I found nothing intrusive about the process and their help was absolutely necessary.

    We weren't involved with CAMHS until we had seen the paediatrician. They were lovely, but admitted they couldn't help the Tourettes side of things, only just if he ever became depressed etc because of Tourettes. It's sad that your son's school are not talking to CAMHS. Our CAMHS nurse visited our child's school and sat in on several meetings with us when we were going through the educational statementing process with our son. We found their help was welcome and they didn't suggest parenting classes. Tourettes and other conditions don't come on or exist because of a lack of parenting skills! It's not anyone's fault, including the child, that these symptoms are around! Keep your chin up, you are already asking questions and that will set you on to the road to helping your kid.

    Last thing.... (Sorry, I seem to have written an essay!) Once your child has seen a paediatrician/ed psych, you could possibly ask the school to call a TAC meeting. (Jargon Alert 3 - TEAM AROUND THE CHILD MEETING). This is a request made by the parent. The school then nominates a staff member, usually the SENCO, to co-ordinate getting together all the specialits and agencies your child is seeing. TAC is there to make everyone talk to each other and share information which will help your child at school. A representative from each specialist or agency sits down around a table with the parents/guardians of the child, SENCO, head teacher, teaching assistants and teachers and hashes through what is going on, any new reports that have come out about the child, and what help can be given. Again sounds scary, but we found it very useful and helped move our process forward. Our TAC meetings happened approximately every month. The TAC process really helped us to see more clearly what could be done. We gots lots of tips about how to help him at school, and sharing information between agencies was very useful.

    I hope I haven't sounded patronizing at all. If you knew already about all this stuff, sorry.I'm a teacher, but approached all the meetings and appointments as a parent, and found the process of fighting for the relevant help and care a bit overwhelming at times. I hate to think of anyone else out there struggling to get the aid they need. I wish I had had this forum to talk to when my son was first diagnosed.

    I wish you all the best and would love to know how you are getting on.xxxx

    PS Tourettes Action have some great leaflets to give out to schools to help teachers with tips on how to help a child with Tourettes. My son's school were very pleased to get these. Any port in a storm!

  • Short and sweet post by me but do you have an email address or fb so we can talk on there an i can reply on there!

    Also thank you so so much for your advice, i will get my partner to read later and we can go forwrad from there!!

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