Samuel's WorldWhat is Tourette Syndrome ??
In a nutshell Tourettes at first to Samuel was a word he did not understand, he thought it was a bug that had somehow got into his body and this bug was what was making him twitch and move!
In just over a year now Samuel is still trying to cope with these sudden movements that happen nearly every minute of every day and for Samuel it is a scary world and frustrating causing many tears.
Diagnosis and Tics
The difference butween a habit and a tic is that a habit normally gradually goes away and oftern occurs for a day, a week or longer, but will disappear. Samuel’s tourettes is a mass of movements called “tics”, not the creature kind thankfully!. Some tics fade away and rapidly increase with new ones starting on a daily basis, but they never go away for good.
What tic came first – the early signs
Blinking constantly was the first tic, followed by sniffing, coughing, clearing throat and snorting.
Then came the more facial tics, the twitching of parts of his face. Just his face alone forms more than 10 tics which include eyebrow raising, grinning, pouting, tongue in or out and a lot of nose exploration!!
After 6 months of having all of these Samuel starting developing more complex movements – stretching his jaw down and jerking his neck back like a constant whiplash injury, this then progressed to his whole head tossing back. This specific tic has become the bane of our lives at the moment as it is the one that causes the most pain, stress and anxiety for Samuel and anyone looking after him.
Make a wish
If a fairy came and visited me tomorrow and said I could have one wish so that one tic could be taken away, out of the 35 or so tics that Samuel has now I would ask that the neck and head jerk be whisked away from Samuel’s life because it is the most upsetting one for Samuel to cope with.
As a parent you feel you are always telling your children to “stop doing that, that’s dirty, stop touching your nose, don’t eat it!” When I think back to all those times – now it is not an issue, I turn a blind eye, its not important really, there is no point in constantly moaning about these habits, Samuel cannot stop them, he can sometimes suppress them, but then more return with a vengenance!
Different noises
Along with all the movements Samuel has vocal tics which can be various animals – sheep and a seal spring to mind – he will also copy and repeat words/phrases that he hears – thankfully as yet we have not have rude words!!!
Which one is going to come next
That’s a good question – I have asked Samuel just that – does he know which tic is just about to happen. It is really like a sneeze – a feeling he has that something does not feel right, he cannot say which movement will happen, it just happens.
Night Night
I used to think that once Samuel went to sleep the tics would stop but they still keep on going! It takes along time for Samuel to drop off to sleep, you know yourself when you are trying to relax hoping you will soon drift off…...... and then suddenly out of the blue your arm moves or have you ever had the feeling just before you finally go to sleep your heart jumps a beat and you think you are falling off a step!! Well now I think I understand how Samuel feels – Samuels’ body will twitch and jerk, this can be upsetting for him. It usually wakes him up in the middle of the night as well – and then the process starts all over again – trying to get back to sleep!
What a brave boy
When I was a child I would cry at the slightest provocation, what a trial I must have been for my mum, Samuel’s Nana! For any family with any disorder it is always hard to adjust and to understand, specifically for the person who has the disorder, but although Samuel gets upsets and frightened and says “He wishes he did not have these tics” the next morning is a new day full of exciting opportunities waiting to happen and he is starting to ignore some of the tics and just carries on regardless.
Can medication help
Because of the severity of his Tourettes at a young age they are interfering with his schooling/social time and are painful. I am not one for dosing myself on tablets even for a headache and apart from the odd Calpol sachet always avoid medication for the children. On this occasion however we have decided that if there is a medication that can at least manage some of the tics so that they are not as forceful and distressing, then for Samuel’s sake this would help immensly through his education years while he is learning how to adapt and accept his disorder. This is only one of 4 disorders that Samuel has.
Help in School
Well this subject is an article in itself really – the statementing process is a long hard journey I have been told which I have just started so I will keep you posted on that challenge. A special school has been recommended because of the complex disorders he has, however if a specialised one to one person could be found a continuation in mainstream would be another possibility?
If anyone has a story on this please do let me know, keeping positive is definately the key!!
images from www.free-nature-photos.org/, www.freeimages.co.uk, www.allfreeclipart.comHi 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.
Joe | Dec 10, 08:40 PM | 2I have heard that some ADHD medicine (Ritalin, I think) causes ticks and Tourette-type symptoms.
amanda bell | Jan 25, 09:25 AM | 3Hi 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
sheri | Feb 21, 09:40 PM | 5my 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 ?
mhodges | May 9, 01:08 PM | 6It 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.
mhodges | May 9, 10:43 PM | 8Seeing 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.
mhodges | May 12, 04:06 PM | 10