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Pediatric Tourette Syndrome Community
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Avatar universal

Can anyone share their beginning symptoms, progression, and diagnosis?

I have a 5 year old who has been dealing with tics for a while. His first tic was eye blinking when he was 3, and he has had many since then sniffing, throat clearing, head rolling, shoulder shrugging, and his latest is eye rolling and something he does to his eyebrows along with it (hard to explain). There were others which may or may not have been tics. Sometimes their very frequent. Sometimes they seem like they stop, but then soon we discover a different tic.

They do not really interfere with his life right now and no one really makes fun of him or anything which is good. He has other problems at school with attention and perfectionism which affect his ability to get work done. He goes to a hlf day kindergarten. His pediatrician is aware of his tics and his other issues. She has suggested we wait until 1st grade to see how he does and decide what to do then (about the inattention mostly).  So now it's a waiting game, but I just can't stop thinking about it.

I have a feeling Tourette Syndrome may eventually be part of his diagnosis along with maybe ADD and OCD. I was hoping some folks could share their onset, progression, and diagnosis stories with me so I might know what to watch out for in the future or maybe just to put some worries to rest. I would also love any suggestions you may have for me.
34 Responses
1192491 tn?1265035429
Hi, My tics started around 10-11 yrs. and it was a mild case.  I blinked my eyes not stop and it lasted a year or so and went away.  So, I can't be much help to you.  
Have you had your son to the Neurologist?  I know there are many many helpful drugs to treat Tourette Syndrome..  Perhaps with early  treatment the progression would  slow or stop?  I hope someone with more knowledge can help.  Best of luck to you and  your son. Hey Jude
Avatar universal
I have identical twins with the condition for us it started when they were in nursery with the odd tic, the first I remember was gulping tic, shortly after that neck tics followed but it wasnt to bad and then as they reached 8 things got worse, they then were doing shoulder shrugging, jerking their necks, blinking, grunting, throat clearing, sniffing, so many to list, one of the boys also had sound sensitivity. I got one of them seen age 8 and was pretty much fobbed off, a year later I went back and both boys were diagnosed age 9. They are now 13 and tics have calmed loads for them thankfully, I would start just keeping a diary of the tics and times they are worse.
219373 tn?1274925034
your on sounds just like mine.  he is 7 now and started having tics at age 2 with severe eye blinking which at the time we thought was just some sort of bad habit.  he has had some sort of tic ever since and now they seem to be getting much worse.  he also does the eyerolling with eyebrow thing and then a head roll.  he snorts alot and grimaces and also has echolalia where he repeats words and phrases to himself over and over.  he is supected of having an autism spectrum disorder as well.  i am beginning to suspect that he may indeed have tourettes.  pedi isnt concerned at this point but i can see he is becoming self aware and is starting to be self conscious and will try to hold it in which leads to a huge releae of tics at a later time and i can see he is in physical discomfort when he is holding it in...i am just trying to make him understand right now that tics are part of who he is and he need to do them when necessary.  i am starting to get concerned that he they are starting to impact his life now and that they will continue to get worse.  i have recorded some of his tics and put them on youtube if you want to compare

http://www.youtube.com/watch?v=KyksKW31igM

i have another more recent one i need to post but my camera is malfunctioning so hopefully it will be posted in the next few days.  would love to hear from you and how your son is doing as it seems we are in the very same boat.  hope you get some answers.
Avatar universal
First of all, thanks to everyone who has replied so far.

I went ahead and scheduled Tony for a visit to the pediatric neurologist. We go see them May 13, 2010. I will update this post after the appt to let you now how that goes. I have also started to keep a journal of his tics, when they're worst and when they're not so bad. I also took a video and cut clips to isolate the different tics. I am going to try to get more/better video before the appt, but I'll give you the links in case you want to check them out.

http://www.youtube.com/watch?v=2IUCanEN3G4

http://www.youtube.com/watch?v=b_SKcUFILVo

I feel like I am doing something useful now, so I am not so unprepared when and if they begin to affect his daily living in a meaningful way.
Avatar universal
Over the last few days he cropped up with a new vocal tic. I caught a video.

http://www.youtube.com/watch?v=1wWpovjBZns

I can't wait until May.
Avatar universal
I can relate to what you are dealing with regarding your son. I myself at age 40 have tourette syndrome, however years ago, it was not diagnosed when my symptoms started around age 12, and I actually diagnosed myself as an adult when my daughter starting with tics at about age 2. She had all the same tics that you and others have mentioned. I took her at about age 6 to a neurologist and basically gave them my diagnosis in which they concurred was tourettes and she was on medication until about age 12. After age 13 she seemed to be able to control her tics and did not want to continue taking medication. Things went well for the last 5 years, although she did still have tics, they were not too noticable nor did they affect her. Now that she is 18, her tics have not only become bothersome to her and alot more frequent, she is experiencing severe headaches due to the eye rolling/twitching etc. She has also started with the mouth grimace tic again. She has an appointment in a week with a new neurologist and is anxious to get her tourettes under control. My suggestion is make sure you have found a neurologist who is very familiar with tourette syndrome and can give you all the answers and assistance on helping your son deal with this. It may seem odd at 5 to be under stress but stressful situations and anxiety (as you indicated he may have ADD or OCD) tend to make the tics worse. Good luck to you and your son and to all the others who are dealing with this condition. I will tell you as I have gotten older, I still notice while under stress my tics will come out, however with age it is usually possible to control them. I wish you the best.
Avatar universal
Hiya, my situation is probably pretty different as my tics first properly appeared when I was 16. (this was when they physically appeared though previously since age 5 I had felt a strange tightness inside that I didn't know how to get rid of. This only temporaily subisded after I started ticcing and this seemed the only way I could get rid of it, even for literally 10 seconds in really bad cases). But my first tics appeared as a twitch in one eye where it would sort of wink, I had a nose tic where it would twitch like a rabbit (I still have both of these) and a sideways mouth twitch where I would do like a half smile. When they started out they weren't constant but after about 2 weeks I became very concious of them because I realised they weren't just a random little twitch but something that didn't seem to be going away. I do now have vocal tics and other tics too but those 3 were the ones I started out with. Hope your son is OK.
Avatar universal
Tourettes is most common in boys about a 80/20 split boys to girls. It usually starts between ages 6 - 10 but can delay until onset of puberty around 12 - 14.
Tics uaually start with coughing or throat clearing noises and progress throughout life with no two Touretters having identical symptoms or tics, however most people with Tourettes do not really like to be in a room with another person as they tend to both develop each others tics.
I started with mouth grimaces, eye twitches, head throwing and throughout the last 33 years have managed to develop a good level of control. It is virtually impossible for anyone with Tourettes to Stop their Tics, by choice for a long amount of time due to the nature of Tourettes. It is like having an itch that just builds and builds until you JUST have to scratch, and most who can stop their tics for a while have a "blow out" after doing so.
Alcohol does slow down the tics by relaxing the brain but this is not a viable solution to the issue. There are no set medications for treating Tourettes but having tried over 40 different ones I can say that some work, some do not and some really do not.
Tourettes can often be accompanied by OCD and ADHD but for most one or both conditions often are not diagnosed together, you need a good neurologist.
The best thing to do is reassure him he is a normal boy and as time goes by and he develops tell him the truth. My parents punished me for pulling faces and grinning and spitting but you really can not control what form the tics will take.
Advice groups are helpful and it would probably be very helpful for him to know people who have Tourettes, if he is diagnosed.
Somethings can seem to stop the tics for quite a long time and I can say that if I am proccupied doing something that takes my conscious mind away I do not have tics. ie: working out with weights, singing ie kareoke or school choir, working intentky on computer or hard physical activity but what works for me may not work for everyone.
Love him and see a good doctor.
Avatar universal
Hello,

I had tourettes syndrome when I was younger. I was around 11 years old when the symptoms first started, which were:

- shaking of the head

- shaking/bone grinding of left wrist

- uncontrollable noises / sounds

- other movements like lifting of shoulder at times, throwing my arm out as if throwing something.

Some days the symptoms were very bad, worse when I was by myself (as no one was watching, I didn't have to 'control' / 'contain' it as much, even so I couldn't really control it very much). It was not until years later that I discovered what caused it, what started it, and in my opinion it is the root cause for many - if not all - tourettes worldwide. It may be controversial and I understand why, as you will see later.

When I was 11 years old I had my first of many mercury amalgam fillings. (You know the silver looking fillings for tooth cavities.) I started a new school and my parents wanted to get 'my teeth sorted' before starting a new term - so I wouldn't have to miss any days off school by going to the dentist. So I had around 5 or 6 fillings a few weeks before starting school. I would eventually have around 12 fillings in total.

I remember asking the dentist at the time just before getting the mercury fillings if I could have the other style ones (white plastic/ceramic non-mercury versions), maybe that was a premonition of what was to come. Anyhow he said "sorry you should have said it earlier, i've prepared the mercury amalgam already, you'll just have to have that." At 11 years old, there's not much you can do. When he finished the fillings and after I went home, I noticed I still had a lot of the mercury filling material in my mouth, which I swallowed.

My tourettes started a day or 2 after that. After careful research I have found out that Dentists have to take a lot of precautions to make the amalgam, as this substance is very toxic! Even the bottle the amalgam comes in says ‘toxic' on the bottle! And they stick it in your mouth, and you have it there for the rest of your life!? In my case, if you add up all the filling material - that is a lot of mercury material to have in your mouth! I have worked in waste management consultancy - you would be staggered at the precautions we take to remove mercury from various areas /sites that are contaminated - even with just trace levels. This is one of the many data points - during my life - that helped me come to the root cause of tourettes. I have read many, many research papers on mercury.

Mercury amalgam is banned is many countries due to toxicity issues. Think back to when your problem started - does it coincide with your tooth fillings? Or another instance of metal poisoning?

This cure / cause is not commonly spoken of because if will effect the medical and dentistry industry quite a bit. As mercury is used in not only mercury fillings but in vaccinations and other products (like contact lens solution etc etc). Did you know you will normally inject a baby / child with more than 20 vaccinations before they are 16!

I went through a mercury detox program, had my fillings removed by a special dentist (and replaced by non-mercury amalgam), no longer took vaccinations and surprise surprise - MY TOURETTES IS GONE. I've never had a recurrence - apart from once - about 10 years ago, when before I went travelling I was told I would need a hepatitis vaccination - and bingo I had a small tourettes attack the very evening when I got home!! I hadn't had a recurrence for years.

I am happy to share the mercury detox I went through, but you can find info on the web if you look around.

Remember the expression "as mad as a hatter"? Do you know how this expression started? Well, hat makers many, many years ago used mercury to polish / shine hats, particularly top hats. It was impossible for hatters to avoid inhaling the mercury fumes given off during this process. Hatters often suffered mercury poisoning as the mercury vapor caused neurological damage including confused/slurred speech, eye blinking and all the symptoms of tourettes (this was concentrated mercury they were dealing with here), shaking of the head, swearing / shouting and other uncontrollable bodily movements were very common amongst hatters - even peeing themselves - hence "as mad as a hatter." Welders also often develop tics - this is due to the metal fumes they breath in (manganese in their case, and syptoms are very similar to tourettes).

In amalgam fillings it is around 40% mercury and this is released slowly during the years it is in your mouth. Of course dentists and doctors say that it is not harmful, but they are just telling you parrot fashion what they have been told by the mercury amalgam manufacturers and their colleagues, without doing any independent research for themselves.

If you have tourettes, do it - remove all the mercury from your life. Do your own research, don't just take my word for it. Remove your mercury fillings and don't take vaccinations which contain mercury. Undergo a heavy metal detox program. The basics of this can be found easily on the web. But simply it is to take a lot of Spirulina / chlorella and green veg, such as parsley, and also undergo a fruit 'fast' for example for a couple of weeks. You want to remove all the mercury (as much as possible anyway) from your body. A ‘fast' coupled with a good detox program (such as collonics, saunas and special diet) is very effective.

When removing the amalgam fillings try to ensure you use a special dentist (but this is not always necessary) that is aware of the dangers of amalgam, as mercury vapour is released during the removal of the fillings, symptoms of tourettes can increase for a short period. You need to obviously minimize the amount of mercury entering the body, and in particularly the brain.

(A good analogy is to think of the body as a large robot or computer, with veins as circuits for example and the organs hardware. Mercury is a very good conductor and when this hits the blood stream - especially the brain it short circuits systems in the brain which cause involuntary movements, just as if you had a piece of wire and shorted a circuit board.)

Tourettes is caused by mercury toxicity in the brain (via the body), and affects people that are highly sensitive to mercury and mercury compounds.

As mercury affects people in different ways and to different degrees some people will have a high tolerance to mercury and may not have noticeable affects, but in general mercury (and other metals) can cause MS, ADD, all types of tics, Alzheimer's in later life, and many other neurological disorders. You will benefit from a heavy metal detox if you have any of those conditions.

Do you remember when your son's tics started? Think back - did he have any vaccinations or receive amalgam fillings just before the symptoms started?
Avatar universal

Here is a video of Dr Andrew Wakefield - watch all the parts.

It shows how the medical industry treats people that do not agree with their system. Dr Wakefield for example found that during his research mercury compounds (in vaccinations) - particularly thimerosal for example caused many neurological conditions - especially Autism. Aluminium compunds and other ingredients also effect the brain and often are included in vaccinations. This oesnt effect the whole populartion -just a minor %.

http://www.youtube.com/watch?v=Drq8zvT-HVc&feature=related

How was he treated by the medical establishment? - he was vilified and attacked and was banned from practicing in the UK and much of the story hushed up. He was one of the leaders in his field. He now practices in the US.

The autism issue is very similar to the tourettes issues (and ADD etc). Mercury through vaccinations have damaged countless children. Dont take my word for it - research as much INDEPENDENT material as possible and come up with your own conclusion.

best regards,
1359902 tn?1277500439
I started out with Tics..i was twitching my head alot around the age of 8.a couple years after..I started having Tics again only with my eyes..I can remember only little medication because i only have a mild case of it
Avatar universal
My 12 year old son just started eye tics.  Turns out it is from the strep throat he had last month.  Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.  Not sure how long it will last.  He has hashimotos/hypothyroidism also.  Found out when he was 10. We are still trying to get his levels under control. They say a lot of kids can get the tics or ocd from strep.  Some don't even know they had the strep, but they have an antibodies test and if it is positive they can give antibiotics.
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