Samuel's World

Hi Lynette
Great site. I have been searching for a support group in west sussex for ages but with no luck till now!! My 10 yr old was diagnosed with TS and ADHD in July 06. Like Sam I knew something was wrong from the early years but even my GP wouldn’t take me seriously I had to self diagnose then insist on a referal. I really feel for all of the parents and carers of TS sufferers as this is such a cruel blow to any child. Ricky has the violent neck jerks too as well as many facial and vocal tics. We have shed many tears with sheer frustration at not knowing how to deal with the situation.
I too work in a main stream secondary school so I have had some training on how to deal with children with special needs and the signs and symptoms. I know that some secondary school teachers do not have this valuble knowledge therefore are not able to deal with issues when they arise so my fear is when Ricky gets to yr 7 and is punished for being “naughty”. Still I have just over a year before we get there.
At the moment he is only taking stratera for the ADHD as when we discussed meds the TS wasn’t too big a problem, however I have a meeting with his clinician in Feb to discuss the alternatives. Unfortunately the TS is fast and furious. Rik himself has broke down and told me he doesn’t want to be special or have habits so we are going to discuss meds for that. I have done some research on the net and was quite horified at the side effects – are all the drugs really that bad?????
I live too far away to be able to come for your coffee mornings however,I would appreciate any advise or hints you may be able to share with me via email or through your site.
Many thanks and good luck
Petina

Hey,

Im 14 have Tourrettes, ADHD and OCD.

Like samuel i was like that at a young age, confused etc…

I just thought i should say that it will all turn out for the best i have two sets of medication i take now, one to help me control my tics and one to help me sleep as ADHD can sometimes keep me awake. I think its brilliant the support your family are giving you and as mine were are obviously keen to find out more and help, it was my Mum who told me about this site…

Also to say that Tourrettes does actually have its advantages for example allowing you to concentrate on what you enjoy, for me i do well in ICT, Maths and Guitar because of this, also i have always enjoyed video games to help as it is always changing therefore giving you different things to concentrate on and showing how good your creativity is, also i do extremely well in Art and Design & Technology, but as i said it is whatever you enjoy you will be able to concentrate on and succeed in, i even get to miss a lesson at school ( French ) as unlike German i did not like it therefore found it hard to concentrate and remember things.

I hope i’ve kind of helped or given some maybe new information to you, it will all turn out all right don’t worry about it =]

Joe.

I have heard that some ADHD medicine (Ritalin, I think) causes ticks and Tourette-type symptoms.

Hi Amanda – Yes it can, Sam did try this medicationfor his ADHD but it made his tics worse!!! It is hard finding an evenly balanced medication if your child suffers from multiple disorders!
Each medication however can depend on the child and is an individual thing really, it can work for some and not for others.

my daughter has tourettes and is autistic shes 11 she was only diagnosed a year ago and we are all finding it extremly hard any advice would be gratefully recieved

my son was recently diagnosed with tourettes/OCD. He has been doing a lot of crying lately. at 8 years old, he realizes that something is going on with his body and even worst; he can’t control it. How can I help him understand something that I am having a hard time understanding ?

It is difficult finding out that your child has a disorder and especially one that you know nothing about!!! I found it very daunting and challenging to accept and my first reaction was to get down to the library to see if they had any books regarding Tourettes and to my surprise they had lots!!! That is a good starting point and is cheaper to do than buying loads of books off the shop shelf and a lot of them are frightening and are more for doctors etc than for parents. You can also find childrens books if you look on Yahoo which are story based about a boy or girl who have started blinking and twitching. Rassurance for children is what they need foremost as often they are frigtened that they are different and they cannot understand what is happening to their own body. The internet is a good sourse of help as well especially all the forums which you can now join.
Take each day as it comes and be as patient as you can be and try and involve school as well to take some of the burden.
lynette x

I appreciate your advice. (lynnette x) I have lived on the internet since his diagnosis. I have made appointments for him with a therapist and a chiropractor. I was told that chiropractic adjustment may help a little; he is complaining of sore legs,neck, and back. I just can’t seem to wrap my head around the situation. One day he seemed fine,then the next day he was twitching and jerking wildly. does it always happen like this or am I missing something? I love this boy more then life itself, and the thought of him hurting physically or mentally is killing me.

Seeing a chiropractor can help – One of the parents who chats on our forum did do this so it might be worthwhile asking on the forum and getting the gen on it all – let me know if you would like to join the forum if you are not already registered (if you want to). Quite a lot of us have all been through similar events at different stages of our childrens lives and we have all found it soothing and helpful in listening to others which is reassuring to know you are not alone! When Sam started jerking and twitching he at first did try and resist the tic but after a while it just happens and he ignores it – I think by him ignoring it his muscles are more relaxed when it happens and so it does not ache too much after a few days however it is important to watch over time if a specific tic/jerk of the body is actually making a nuscience of itself – Sam used to have a terrible jerk of his neck which he had to thrust backwards which was like a whiplash affect – after a while I did take him to a chiropractor for an assessment and she did confirm that his muscles were either over exerting themselves or under thus making him very stiff and achy. Now that Sam is starting a new school on Monday they will be providing him with a physiotherapist who can tackle these muscles.
Usually the tics settle down into a pattern and can wax and wain. They seem to go in phases. There are certain foods we avoid to is Sam’s daily intake which do cause them to get worse. Haribo Sweets and Wotsits crisps are awful for Sam.
Have a good weekend and do keep in touch!
lynette x

I have registered for the forum. Right now I can use any advice I can get. We have definately had our bad days. Today, so far, has gone quite well. He went back to school today, his teacher called to let me know how he was doing ( the school is being terrific). I am going to just relax and take it one day at a time. One more question though. The neurologist put him on clonodine and it has seemed to make things worst! I am not looking for a magic pill, I just want to know if this is going to help at all or should I go another route such as, alternative therapies, diet changes, etc. I just want to help him; the main concern for us right now, is that he is having a hard time sleeping which is making him irritable therefore, making the twitching worst. Once again, thanks for all of your advice.

Hi Everyone, My son was diagnosed at the age of six. He was in his own world,showing signs of being very smart at ages 4 and 5. We thought he might be an architect. Soon the building of towers, turned into other things. We noticed him lifting his shoulder to his ear and tilting his head, as though he had an itch. He scrunched his nose alot, then the rolling of the eyes. He would say, “I just have to”. Then that trip to the neurologist. He was diagnosed in 5 seconds. Tourrettes, ADD, ADHD, and the worst was the OCD. If he is not happy, the house is not happy. He is about to turn 16 and very popular with the girls. He is failing school though. I am taking him to an interview at a boarding school. This is the hardest thing for me to do!!!! Mothers of tourrettes children know that the bond is strong between us. But, I am stick thin, tired and emotionally riddled with questions of what I could have done better. I just need help to pave the way for that smart boy to succeed in his adult years. His nick name is twitch. Wish us luck at tghe in terview, I have a feeling we are going to need it. I have needed a support group for a long time too. Thanksd, Sarah reel

Hi Sarah – I wish you luck at the interview Sarah – If you would like to join the forum please let me know and I will send you your password details. There are a lot of mums on there and you can chit chat away. Its a good way of unwinding!!! Your son has similar disorders to Sam – the OCD is the worst one but then each disorder has its moments !
You seem to be at the other end of the education ladder!!! By the sounds of your tale it does not get any easier??? Our son has just got a place in a special smaller school and it is his second week so far.
Keep in touch – where do you live???
lynette x

My dear son Gabrielle was diagnosed on Thursday with Tourettes. He does not pay attention to the nose twitching, the constant torso side bends, the backwards neck jerk, and the bending and straightening of his elbows. It seems to be that we are the ones with the worry. He mentions none of them and we do not either. Has anyone’s child reacted the same way? Just not aware, or ignores the constant interuptions? Gabrielle, is scheduled for an MRI and an EEG. Has anyone’s child been thru these test? If so, what type of information did you receive from them? Blessings to all, Maria

Hi Maria – Thanks for your comments – Your son Gabrielle sounds like a very brave boy taking his disorder in his stride – this is the best way as he can learn to adapt to it easier. It is usually other people who react the most as they are unsure of how to be and do not understand what Tourettes means. How old is your son and where do you live – which country?? My son has not had a MRI scan but we have had the ECG which is simple to have and monitors the heart especially if meds are being used. As he grows older the Tourettes might subside but he will have learnt to accept it making him a much stronger person inside.
Take Care of yourself!!

lynette xx

Lynette, Hello and thank you for writing back so, soon! Glad to hear that the EEG is simple. We have not had meds mentioned to us and yes, Gabrielle is a very brave, creative, funny and non-stop 6 year old boy.
We live in Orlando, Florida. Do you know of any resources in this area?
Your sight has been a blessing. I have enjoyed learning from everyone and getting to know Tourettes.
Blessings,
Maria

Hi Maria – There are many tourettes sites on the web – sadly I live over in England and so do not know of many resources in your country. Best of luck to you and your family – the blessing you have had is getting a diagnosis early enough which is crucial to your son’s development and growth. Nurture the talents that Gabrielle has and above all remain positive as a family.
lynette x

Lynette, Visted England pregnant with Gabrielle! I loved the beautiful, green and lush countryside! Thanks for being one of the many stepping stones on our new journey. I will hold on to your words and remain positive, so as to influence the tone of my family. Warmest regards, Maria

Hi Lynette, don’t know where to start! I have been logging on to your sight for the last five months and never felt able to join. My 9 year old daughter has been diagnosed with TS and we are trying to get help from various professionals. It has been like a whirlwind since the diagnosis. July last year she had a Grand mal seizure and was left with Tourettes. We have been told there is no connection. She was diagnosed with Epilepsy at 18 months. She has about 20 tics – maybe more and jumps between fits of anger/rage (which usually ends up with self harming) to overly confident child like behaviour – singing, climbing on tables, dancing in the street etc. We as parents don’t know if this is excessive behaviour for someone with TS as no one seems to give us straight answers. Infact no one seems to be asking us the right questions. I’m starting to belive that there is nobody (Doctor) who truley understands TS. Recently She has told me that she hears a voice which tells her to do things. Is this connected, I’m not sure. I have spoken to someone from the CAMs team about this today.I have found your site a comfort, We’re not all going mad after all! We are considering joining the TS association. Have you done this? We feel that the time has come for us to meet other families and share experiences and understanding into what our children have to endure daily.

Hi Lynette.

Firstly, I think you’re doing a wonderful job here, and the Nana’s poem was amazing.

Like you I have become frustrated with not getting enough support with Tourette Syndrome, my son was finally diagnosed when he was 7 along with Dyspraxia and OCD’s, and now he is 9 we’ve seen the ‘experts’ once since and just been fobbed off with cognitive therapy.

We live in Penzance, Cornwall and there is no help for TS here whatsoever. I would love to be able to start a support group here as I am sure there are more families in my region with TS, and I would love any advice from you if you have any?

Thanks for reading

Sara Summers

Hi Lynette, I have a very simular story to all of those posted. I was hoping you could help me get conected with others in your forums. I really at this point think it may be very helpful for me to talk with others.I also have a 6yr. old newly diagnosed with TS.So please let me know how to get conected to the forums.
praying for all.
Thank you
Jan

I am an athletics coach and i have a 14 year old boy with TS join my group.
He fits in well.
Is quiet and the only tic i perceive is a severe twist of the neck which happens often.
Any advice?
What effect will hard exercise have?

Pat

Great site! My 11 yr old son has T.S. & ADD. He’s been on clonidine for about a yr with great success. This has really helped control his tics so he can function in school better. He was just perscribed Pamelor (nortripyline) to try to help him focus in school better. I used to be against all meds for kids till it was my child with a need. Funny how your opinion changes! I’m going to try the new meds only because i trust his Dr. that much. He has been right on with everything so far so I figured why not see if this will help him not get into so much trouble at school. I just want him to do well. Hopefully it will help, i’ll let you all know. ps last year he had tried metadate with horrible result! anyone else?