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my 14 yr old son and his tourettes syyndrome
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my 14 yr old son and his tourettes syyndrome

My 14 yr old son started his first tic when he was 8. He was on a basketball team, I noticed during one of his practices his eyes kept rolling to the right over and over again. This lasted 2 months then it went on to stretching his neck out. He would do this about 30 times in 1 minute. I consulted his doctor and she said boys get habits like this and he should stop doing it soon. He didn't. By the age of 12 he had several different tics motor and vocal. By this point I changed pediatricians and his new doctor caught it right away and referred us to a neurologist. Even in school when he was asked to stop the noises he could just for a moment, and then begin the tic even worse, until he was asked to leave the room. He has whistled, made clearing throat sounds, yell out words and phrases, severely jerking his head as if to head bunt, roll eyes, these are just some of the tics. He also tightens his forearms, and other muscles tensions. Some of these tics were so bad that by the end of the day I would have to give him tylenol because he would do the tics so much during the day that by evening he was hurting and heve headaches. Within the last 3 months he has gotten worse, he now has 5 knots on his neck and back where he has jerked his head so much, bad days he does this every second he is awake. They never go away, my son was a staight A student he has 2 F's and a couple C's now He can't even sleep at night because he is twitching so bad. Which in turn means I don't sleep either, I am so worried about him. He is always irritated anymore and snaps at people. He is suffering and I feel helpless. my son is now 14 and we have seen a neurologist for 2 yrs, and he has put my son on several different meds, none help. Is there anything to help us, any other treatment?
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285045_tn?1253644928
Hi,
I so understand your concern. My son is 13. He went through some bad times when he was younger. It has really slacked off now. Since this is really affecting your son's well being, you really need to push hard for your doctors to help him.
I know you have probably tried, but is there anything your son enjoys and while he is doing it does his tics subside?  (singing, musical instrument, reading, writing stories, legos, etc )
Also I taught my son relaxation techniques. Of course he laughed at me, but now he uses them. (yoga)
other than that, since I am not a doctor, I can only give you my experiences.
I hope the best for you!!!!
Cyndi
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Avatar_n_tn
I left you a note I hope you got it. Thank you for commenting on my son. Any advice is great.It feels like I am not alone.Thank you again.
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Avatar_f_tn
I read your post and felt deeply for you and your son.  My daughter who is only 6 does not seem that bad, and hopefully it won't get to that point.  I don't know where you live but you should locate your local Tourette Syndrome Association and find a neurologist who specializes in this area, some state have institutes that deal with childrens type issues relating to everything from Tourette to Atisum, those places are excellent for treatment.  There is also a great web-site called http://tourettenowwhat.tripod.com/ which you can get a lot of help and information from.  Your son shouldn't be going through such anxiety from this.  I have done a lot of reseach and the vast majority of children go on to lead healthy lives and manage their TS.  I want to say from your post that his TS still needs to be better put under control.  Also behavior modification can help him with his feeling of out-of-control and snapping at people, he has to come to the realization that he has the syndrome and find out how to cope and move forward with it.  The web-site I recommended is very good, read through every area and you should be able to find the help you desperately need there is also the http://www.wemove.org web-site another great one.  Don't stop until you get the results you are trying to achieve.  the post above also regarding finding what your son enjoys to do and relaxtion techniques are all part of the steps to managing TS.  You also may want to check into diet also.  Hope this helps.  Good Luck and keep looking for your answers they are out there.  Your son also needs to know that he can gain back the quality of life he desires he just needs to work a little harder at it than other people.
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Avatar_n_tn
I totally understand where you are...and it's a horrible feeling!  I too have an 8 year old son who was just diagnosed with TS 2 months ago and we are struggling as well.  Another great website is www.tsa-usa.org  I found alot of information helpful just to see that we were not alone in all of this.  My son has been out of school since his diagnosis due to tremendous vocal and motor tics.  He is on what they call "homebound schooling".  It's helpful, but he has fallen totally off of the school routine, but we are hoping that next year, as he will certainly have to redo 3rd grade, will be better.  His anxiety level is over the top!  We are on our second round of meds, which is Respirdal, and he's now having troubles with what they call Respirtory/Larengeal Distonia.  Somedays this all seems way more than we can handle, but we keep trying.  Best of luck to you, and I hope we too can find some confort in knowing that others with TS have lead such normal sucessful lives.

Most Sincerely,
Mary
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Avatar_f_tn
My daughter, too, has Tourettes. She will be 6 next month. It definitely waxes and wanes. Looking back i think she actually started symptoms around age 2. ANyway, I am posting here bc i am somewhat fortunate (I guess in  a strange way) bc her dad has it too, and therefor, we have the luxury of knowing what worked for him and will probably follow suit. He was diagnosed around age 5 or 6, was put on meds around 8 that made him very drowsy and then was switched to Catapres, THIS WAS GREAT bc it comes in a patch form that simply needs to be replaced once a week. His mother put it in the small of his back and that was it! He had been pretty severe with scabs on his chin and side near his rib cage from all the rubbing from the tics. After he got on the patch, his mother said his symptoms decreased dramatically. He was on this until age 12 (right around puberty - which is usually a period where it gets better or worse) and then on his own he decided he no longer wanted to be on it. Fortunately for him, when he was off the meds his symptoms didn't return. Just to clarify they never went away completely BUT just to put it in perspective I NEVER knew he had it until he told me!! After he told me i noticed tiny little things that he did with his fingers and his neck muscles but no one else would ever no the difference!!! I guess it gives me a little hope bc according to his mother, my daughter started off almost identicle to her father. Now that her tics are started to involve her adorable little face I think it's time i try the Catapres (Clonidine) patch, too. I hope this helps anyone looking for meds to try. Also - most importantly she told me that the patch had NO side effects at all!! I know every case is different, but i just thought i would share.
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640345_tn?1223118922
Try changing your sons diet,NOW!my son was diagnosed when was 8,and he is now 31 years old.I use to cry myself to sleep,almost every night when he was young.They told us that out of 300 cases at that time (1985),Randy was the worse one @ Childrens Hospital,Cincinnati.Randy had every tic that TS had to offer,not to mention the OCD,ADH,and on and on.God love his heart,the only peace he got was when he slept.i use to pray that God would  take it from him and give it to me.I know how helpless you are feeling,as a mother.If only I could go back in time and know what I know now,about how diet effects everything! Try to take away all the yeast in his diet.Also,limit his carb intake,and add lots of veggies and fruit and lean meats.Above ALL,push him into the world,do not let him feel different!And DO NOT "poor little him",as that is where I mad emy mistakes.It is so easy to do when you see the hell they live in,but stay strong and push,push!The day will come where he will question every decision  that you make for him,today.Pleas efeel free to visit my profile,its all about Randy today.Hes lead vocalist in his own band and is doing well.I believe the TS help make him the man he is today!God bless you and your son,be strong,and he WILL make it!
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