Hi, i have booked an appointment for my son Tommy at the doctors, i would like to get him referred to a tourettes specialist/neurologist at Birmingham childrens hospital. I have taken him to the doctors before and he was referred to camhs. We have been to camhs a few times and has had a diagnosis of tourettes, but as for any help all we have done is go in to speak to a psycologist a few times, but have not really found it helpful. After three or four visits to camhs i went back to doctors and asked for a referral to a specialist in tourettes, he said i would have to be referred to camhs. I have since heard from numerous people that he can be referred by the doctor and that i should demand it. Tommy is seven and his ocd seems to be the dominating factor at the moment with his coprailia. He is getting really upset about things going on and on in his head, he says he has to keep starting from the beginning. It is starting to affect is day to day functioning. He was lying on the floor this morning hitting his head, praying to god, asking it to stop. He was saying can't he have medicine to help it stop and why does'nt god help him.
Please can anyone give me some advise on how to approach it at the doctors, i don't want to be turned away again. I am not naturally a pushy person but enough is enough now.
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kayt
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We seem to be in the same-ish situation as you. My 7yr old had just had a diagnosis of transcient tic disorder, but this is probably due to the fact that just over 2 months ago there was absolutely no sign of anything being wrong at all. My son has a vocal tic and varied motor ones, so I am pretty sure that it is tourettes. We were referred to CAMHS about 5 weeks ago and still waiting for appointment, so I arranged a private appointment at Edgbaston Priory as we couldn't wait with no help from the NHS... I ve always been a bit of a supporter of the NHS really but the lack of help for our family has been unacceptable. I would be interested if you could forward me the info about getting a referral to Birmingham Childrens because after a great deal of digging I managed to get Great Ormonds to agree to see him if I get him referred, (not sure if GP can do this) We have an appointment with the Paediatrician on Monday so I will ask them about it.
It's horrible not being able to help your children, I know that there is no magic wand to be waved, but being told to just wait isn't good enough. It has been a very steep learning curve and in some of his more 'energetic' bouts of tics I nearly called an ambulance as I didn't know what to do. We are now finding our own copying strategies but as you well know this condition changes constantly so just when I feel a little more in control, it changes and we have to start all over again!
Our main problem is he has definately developed ADHD, no signs of anything before. He has an 'energy' burst at bedtime which has manifested itself in full body tics, forward rolls, jumping in the air and a general lose of motor control, (we have to physically help down stairs as he said he was scared he would fall) but lately it's the urge to be 'naughty' in his words his 'habit' unfortunatly is to punch, kick, scratch and bite me. He apologises whilst he's doing it, so I tell him it's ok and not to worry. If I sense it early I can divert it into a play fight which is rough but more controlled than if he actually gets violent.
At the moment we don't want to medicate but that basically has been the only support given.
I'm new too the site so don't know how to contact you privately but I am also in Brum area and if you ever need someone to offload to/ meet up in the summer hols etc please feel free, I may need to do the same with you!
Hi, i go to a support group and have met a great bunch of people. Are you on facebook? I am in the west midlands tourettes action group and also people with tourettes group both on facebook. If you join there we can chat some more. I think you will find it helpful i do. The support group are meeting on the 28th of july details on facebook. We usually meet in brum but will be meeting at coventry this time. I have met another girl on facebook and the group and we have met up a few times she has a six year old boy and my son is seven, he will be eight in october. It is really helpful chatting to people in the same situation. What part of brum you from, we are from great barr.
Hi, we're Halesowen way. I would like to attend the meeting, however we were lucky enough to get some olympic tickets for that date so we're not around. I applied for these pre and signs of things to come, my son is generally quite confident so hopefully going to a large arena, loads of people etc shouldn't be too much of a problem. I am on facebook but don't tend to use it that much! My son is 7 too and will be 8 in Jan. I used to teach near great Barr so I know your'e not too far away.
You can feel really alone during the hard times, putting on a brave face for your kids whilst churning inside. For me it's the fact that it's come completely out of the blue, my mum was visiting in early May and there was nothing then, it's like he's managed to find a list of symptoms and is trying them out one by one! He said the F word for the first time last week end, I didn't even know he knew it until then. Mind you I was impressed with my own control as I calmly told him it wasn't polite! It was just strange hearing his little innocent voice saying it. After repeating it a few times I haven't heard it since, so fingers crossed! I don't think his yr 2 teacher would like it very much!
Hi, i managed to get a referral to birmingham children's hospital for a second opinion is what they have referred him for, which i don't understand as he already has a diagnosis. Tommy has swearing and inappropriate gestures, over the years he has manifested every tic in the book and believe me i have read a lot of them. His school are great and so are his peer group he has some very good friends who look after him on his bad days. i hope this continues. Your son will not have a diagnosis until he has, multiple tics both vocal and physical for a year or more. This site is great and so his the facebook page. We are definately not alone.
I have a friend who lives in Rowley regis we go jitterbugs by the lydl supermarket, don't know if you know it. Will let you know when i will be there next. Will let you know when the next meeting will be for support group unless you join the west midlands page on facebook as we are kept up to date there.
So sorry to hear some of the medical community is letting your child down.The care our child has received has ranged from apalling to superb. My son started getting severe symptoms when he was 9, and although he had mild autistic traits before that, we felt we didn't need to see a doctor. When we finally twigged something was definitely going wrong with vocal and motor tics, obsessive behaviors and lots of weird and wonderful 'habits' errupting, we consulted with our child's school who agreed it was time to see the GP. It took our GP 6 months to refer him properly to a paediatrician!!!!!!!!! What we didn't know was that our son's school could have referred him to the same paediatrician 10 times quicker. Things moved more quickly too when we and the school got an educational psychologist on board.
The primary school was fantastic, very supportive, training staff and informing my son's classmates what tourettes is (with our permission) and what they could do to help. He has suffered no bullying, even though he has 40 + different tics, habits and obsessive behaviours.
You don't say how old your child is. My son is Y6 moving onto secondary education in September. If you are having difficulties getting your GP on board, get another's help to get referred to a paediatrician. It was the paediatrician who initially diagnosed Tourettes. Your child's school SENCO (special educational needs co-ordinator) will also have the power to refer your child to a paediatrician, but we found this out too late. Our local authority kept banging on about budget cuts and staff redundancies. Keep gently pushing. Get to see the county/community paediatrician through your child's school if you have any difficulty with your GP. The paediatricians have the power to get to the specialists. A GP should be able to refer too. Choose the name of the most suitable specialist for you and take it along to the appointment with your GP. Because Tourettes can be an unknown quantity to some GP's, we found knowledge is power. Present your GP with a name and where the consultant is based and you have them cornered hopefully! Tourettes Action has a full list of all the specialists and consultants. If you already have a diagnosis of Tourettes it should make it easier too!
We were referred to Nottingham Queens Hospital by the paediatrician and received first class care. The consultant has a tourettes special interest and we were immediately empowered by their help and assistance. They even gave us material to help our son's teachers. We were given the holy grail of help and immediately offered Habit Reversal Therapy with a promise that they would be on board to help us until our child is 19. The habit reversal therapist has even offered to Skype our son between appointments! If we are worried we can email them.
We were referred to CAMHS. They said they couldn't really help us with our boy's tourettes, but would help if he ever became depressed or suffered high anxiety because of his condition.That is not the case at the moment. CAMHS have attended meetings when taking our son through the educational statementing process. Get your child's school to get an educational psychologist on board if there isn't one already. We were really nervous about getting all these specialists involved with our family but they have been a Godsend with the endless shifting sands that Tourettes presents.
My son also needed a full Autism assessment. My local authority wouldn't do one, citing budget cuts, but again the specialists at Nottingham stepped in and assessed him. He was diagnosed With Autistic Spectrum Disorder and Tourettes. If we hadn't got to see the consultant specialists, we wouldn't have got the full information about our son's condition. We were able to get an educational statement and have got a place in an SEN school for September. (Although many Touretters can cope well in mainstream education).
Last piece of advice, if you can, be prepared to travel. We were desperate for proper help and on the verge of spending a fortune to get that help privately. Because we told the paediatrician we would travel, he referred us to a fantastic hospital an hour away. It's worth the drive and the doctors and habit reversal therapist try to make appointments in school holidays so that we can have less time off work.
It's horrible that sometimes we have to fight for the specialist care our children need. 1 year on from the first diagnosis, we still feel we are on a roller coaster but with the right help on board, it is a little easier. As parents we are forever wondering if we are doing the right thing and watching our son go through hell is very painful at times.We too, are not pushy people, but we have pressed forward and not taken no for an answer. One thing that I have learned is that the Touretters and carers out there are a pretty incredible lot and there is always someone who is willing to listen. I wished I had found this forum a year ago!
I wish you the best of luck. I know this is the end of the school year, but the SENCO at your child's school can get the ball rolling in September if you don't get any joy with your GP.
Thank you so much for your reply. Tommy is in year 2 going in year 3 sept. Had a meeting recently with senco, he is on school action plus, they are doing a provision plan and he has an iep. The educational pscycologist and student pupil support are involved. We are heading in the right direction i think. We have just had is school report and he is currently working at level 1, which is about a year and half behind his peers.
I have taken Tommy to the doctors and he has been referred to birmingham children's hospital for a 2nd opinion, don't know what that means has he has had a diagnosis of tourettes for about two years, his first physical tics was at four, but there was things going on before that.
Hi Kayt, so sorry to hear your suffering, my son was diagnosed with TS at the age of 7yrs, and it was his doctor who referred him to a specialist. I think maybe you need to go back to your doctor and insist for a referral by him/her as it will prob be quicker than going through CAMHS. I wish you all the luck in the world. xx
Hi, i took Tommy to the doctors and surprise surprise they wanted to refer him back to CAMHs. I said to them that i want him referred to a specialist at birmingham childrens hospital. The doctor said she would have to speak to her senior partner, then came back into the room and said they would refer him. When i asked the receptionists today to check the system to see if it was done, he is being referred for a second opinion. Don't know what they mean by that as he already has a diagnosis but hey ho.
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Tourettes not just a tic disorder
Totally fed up.
Does god have any part in our lives?