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Old 02-12-2007, 01:00 PM   #1
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plainjayne HB User
Unhappy child with tourettes??

is there anyone who has a child with tourettes or tourettes symptoms? i have a 7 year old who is showing signs of tourettes, i have tourettes myself but even i have never seen anyone else with it. i think i will be a good support to him as i suffer myself but i would welcome any new suggestions for either myself or my child to make life a little happier for both of us

 
Old 02-12-2007, 06:11 PM   #2
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calgarygirl HB User
Re: child with tourettes??

I have an almost 16 year old son with tourettes, he was dx with "tics" when he was 9 and has been on medication since he was 10. He has both the vocal and motor tics. The decision was made to treat him with medication as his vocal tics were disturbing the classroom. The medication has helped tremendously and his neurologist monitors his weight to adjust the medication as needed. As far as we know, there is no family history of tourettes or tics but I do think there is some ocd. He no longer has any vocal tics and any motor tics are very minor now-the tics seem to lessen as he gets older. Good luck to you and your child.

 
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Old 02-13-2007, 11:29 AM   #3
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Re: child with tourettes??

Hi I have two children with tourette syndrome we do have a family history of tic disorders but noone ever diagnosed with tourettes, my boys are now 10 they first started with tics at the age of 4 and 5 which were mild shrugging shoulders, throat clearing and so on by the time they reached 8 one of the twins had got quite bad and this was the first time I took him for any help, he and his twin were diagnosed last year and at the moment are doing well, have you spoken to anyone about your sons tics? I'm sure having a mum who fully understands will be a great support to him

 
Old 02-14-2007, 07:24 AM   #4
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Re: child with tourettes??

loopyloo, do you give your children medication? i wouldnt want to give mine medication as i know how horrible it is. i also dont know if im being overly concerned because i have it myself and im just guilty that i might have passed it on i dont even know if he has it, he is forever shouting and making noises but not the same ones and i never went through that. i wasnt vocal until puberty then it just got less and less until now im very good at controling that part of my tourettes did your children have so many different tics? mine come and go or all at once but i rarely get new ones but that is also to do with my age.

 
Old 02-15-2007, 06:09 AM   #5
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mitpatsmom HB User
Re: child with tourettes??

I have an 11-y-o son with tics (first dx at 8). His are all facial, no vocal and he's slightly OCD. The tics were getting pretty bad, so the ped referred us to a neurologist that suggested medication.

We were really hesitant to medicate, but worried that he would be starting middle school soon and didn't want him to get picked on. We put him on guanfacine (worked up to 2 mg/ day), and it really hasn't been as bad as expected. At first (and anytime we increased dosage), he was tired a lot and often fell asleep in the middle of the day, but that stopped after a few weeks.

The good news, most of the tics have stopped, except for when he gets really excited or anxious about something. We never thought he had a concentration problem, but since going on the meds, his grades have improved dramatically, making straight A's on all but two report cards in the last 2 years (and when he didn't make straight A's, he was bumped off by only one B.) He had never come close to principals list until he went on the medication.

All in all, I think the medication has improved his life. I know what you're going through. We debated and stressed and prayed to make the right decision. (Before we put him on, we had never had either of our kids on anything other than antibiotics before, and that was only once or twice. We were really terrified of long-term medication.) We are glad that we did chose the medication. He's happy, well adjusted and has made lots of new friends in middle school. It sure beats worrying about kids making fun of him because he's different.

 
Old 03-11-2007, 10:42 AM   #6
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Re: child with tourettes??

mitpatsmum, thanks that has really helped i might mention that medication to my doctor for myself as all the meds i have tried have been awful i suppose the good thing is that i can use myself as a guinea pig and try stuff on his behalf 1st! x

 
Old 03-12-2007, 11:10 AM   #7
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hebrew HB User
Re: child with tourettes??

I have an 18 year old son who has mild tourettes usually head shaking, but also compolsive, and needs routeen. My youngest son has had a real bad time with tourettes from the age of about 5, he is now 12. I also have suffered myself when in my teens with eye blinking and grunting. My youngest son goes through extremes, he can be swearing, and spitting which is embarrasing when out, to not being able to walk without haveing to rub his foot on his leg or bend down and touch the ground, even when crossing a buisy road. He was always worse when he came home from school, he was able to supress alot of his ticks when in school, or go somewhere quite to let them out. It did effect his concentration and work at school because he was trying to controll himself. School were good that they would give him breaks from work and give him errands to do so that he could get out of the classroom situation and release his tentions. I found that keeping a routeen for him and alerting him of any change well in advance helped him. Makeing sure that he ate no addatives, ate small amounts and often, keeping his blood sugar levels constant, and put him on eye q fish oil tablets helped. On days that he was very stressed and his tourettes over took him i would phone school and tell them i would be keeping him home, because making sure he was relaxed was the key to my Jack, i would take him iceskating or something where he had to concentrate for a while gave him some relief from the condition. He is so much better now, they also do seem to grow out of it, but are more able to hide it, anxiety and stress is the key issue that turns on my sons tourettes. His latest ones has been rubbing his thumb and finger together like he is clicking them, they change and they come and go. i feel it is good to talk to them about it and explain to them what is happening, as they are embarrased by it, and do not realize others suffer from it, and do not know why it is happening to them. Also it is good to let them know they will come and go and will change, they have to learn to exept it and not be embarrased, they will as time goes on learn to discard it, or like my sons now tell people when they say why are you doing that. They say i have tourettes, some say no more, others ask questions, it helps others to understand too. i passed a lot of information into my sons school, and to his grandparents to help them understand the conditions, and i gave them information from my own experience with living with it on stratagies to help, both my sons are confident and understand tourettes themselfs which is half the battle.

 
Old 03-13-2007, 02:37 PM   #8
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Re: child with tourettes??

hebrew what a great parent you sound!i have mentioned it to my sons school an dthey say they havent noticed anything with him so maybe im just over reacting to things he does i think im a bit paranoid but i just want what is best i have had tourettes since i was 5 and feel i have to hide my face as the tics that stay all the time are facial i have always had long hair so i can hide a bit im having it cut short tommorrow as i need to stop hiding myself if i need to show my children its nothing to be embarrassed about!

 
Old 03-15-2007, 04:17 AM   #9
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Wink Re: child with tourettes??

Quote:
Originally Posted by plainjayne View Post
hebrew what a great parent you sound!i have mentioned it to my sons school an dthey say they havent noticed anything with him so maybe im just over reacting to things he does i think im a bit paranoid but i just want what is best i have had tourettes since i was 5 and feel i have to hide my face as the tics that stay all the time are facial i have always had long hair so i can hide a bit im having it cut short tommorrow as i need to stop hiding myself if i need to show my children its nothing to be embarrassed about!
It good that you feel strong enouth to come out from behind the curtain, you will know you have good and bad days, but is something that is always with you, you have to face up to it at some point. So what if some stranger is looking at you for a breif moment, their not being personal, it something we all do, look when something is not the norm. You are the one that is thinking they are thinking bad things about you, they will turn and get on with their day, and your will be forgotten, how many people do you see in a day, do you remember any of them. As for your friends, if they understand that what you are going through is involatary they will see past the ticks and understand how hard it is for you.

You are always aware that they are happening, and when you are in unfamiliar surroundings or with people you dont know they become worse, mainly because you know they are going to get worse, the stress puts them into overdrive. You need to acept this is who you are, and stuff the ones that are rude enough to stare or make coments, show your family their is nothing to be ashamed off, the younger they are and the more information they have the better they are at shrugging it off. As for your boys school, they proberbly only see mild tics, if none at all. Children can supress them at school which makes it hard for them to understand, and they say no they are fine, or they behave well, but the child you receive home is completely different, thats because thay have the ability to suppress it and hide it, that is a sign that they too are feeling embarrassed about what they are doing, you too are a good parent, you are takling the school, the more people that understand the more at ease the child feels that they can relax in their company and not supress their ticks. Their is a lot of people out their with tourettes, some very mild and they hide it so well. good luck, new hair style new and confident you, think of some funny comments your boys can throw back at people if they are not understanding, they will be wonting someone to say something in the end, as they get confident, let them know just because their mum has not grown out of the ticks, chances they could, because they will learn not to be ashamed and hide, you are just begining, dont let it run your life anymore. You are GREAT, beleive it

 
Old 03-24-2007, 12:39 AM   #10
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MarkTS HB User
Re: child with tourettes??

I have TS so I believe I can give some good help and information. I also know that my nephew also has TS but thus far its quite minor which is a good thing so I'm not complaining. I would also advise against meds as long as you can. If you must go with meds start with meds that "aren't" mind altering meds. Mind altering meds (ie anti-psyc meds) are the most powerful and tend to have the worst side effects too. Also if you do look for a doc I'd suggest trying to find a Neuro that has current TS patients and "not" a psychiatrist. Also in my experience you tend to find some of the better TS docs in hospitals and children's hospitals are the best place to find them. Also if you can find a doc that is specialized in both Psychiatry and Neurology that would be my first choice. I had a great doc growing up that worked in All Children's Hospital in St. Petersburg, Florida who had specific TS experience. I believe his name was Steven Cohen. He was amazing at balancing the TS side of things from the ADHD, anxiety and OCD because I had it all. Ever since I left him for insurance reasons (when I was 15 and mom switched insurance) things went downhill as the new doc just couldn't balance the meds as my issues changed.

I really wished we had a database of docs that have experience with TS because it would sure make our lives much easier.

 
Old 03-25-2007, 09:00 AM   #11
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mitpatsmom HB User
Re: child with tourettes??

Wow, Mark, what a small world! I posted earlier about my son and he sees a doctor at All children's in St. Pete, too. I don't know Dr. Cohen. Is he still practicing? Our neurologist is considered one of the best in the state (or so I've been told). We are lucky to have him so close.

We put our son on Guanfacine (Tenex) and have mostly had good side effects, other than the occasional nap and upset stomach. It's helped him concentrate, since he isn't worried about how the tics are going to be perceived by the other kids.

Our doctor also advised our son to use a sense of humor when the other kids ask why he twitches, so he says. "It's just my habit, everyone has one. It's better than picking my nose." The other kids seem to accept this explaination and he hasn't had any trouble because of it.

 
Old 03-29-2007, 01:55 AM   #12
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MarkTS HB User
Re: child with tourettes??

I believe Dr. Cohen was in a place next door called Suncoast Clinic or something like that. I just remembered that now lol. I had about five docs for other reasons at All Children's Hospital. I got bit by a rattlesnake when I was 14 (went to grap hose in front yard to water plants and got bit) so Bayflight took me to Bayfront and moved me into All Children's. For I guess two years after getting bit I needed to see five docs to deal with issues from immune system issues, heart issues, kidney issues and seizure issues. By the way you can't go wrong with that hospital that is for sure. Now beyond that I never saw any doc for TS from ACH. I have found a good TS doc at All Children's Hospital in Boston for my son. Oh my nephew is also my son but that is another topic for another time. Its driving me nuts because half the time I say son and the other half I say nephew so I tend to confuse many people including the docs lol.

I'm glad to hear your son is doing well thus far on the meds and I wish meds worked as well for me but I still managed. I never did well with drugs so I'm always happy knowing that others are doing well with them. Its one more child having an easier time so I'm always happy with that.

Oh and thanks for reminding me again that I can't get the disney world its a small world after all song out of my head. That is the most addicting song in the world and took me about six hours to fully get that song out of my head.

 
Old 04-10-2007, 12:48 PM   #13
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plainjayne HB User
Re: child with tourettes??

i have only seen a psychiatrist its impossible to get officially diagnosed here plus the docs dont see the point in being told what we already know especially as im unwilling to take medication i have tried a couple of different tablets and they have just made me ill and sleepy there was a couple of days recently when i thought of trying medication but have decided totally against it.i have tics which involve my mouth and thats what makes it worse the noises arent so bad as i can hold them back more im a good looking girl but my tics make me ugly and i dont think thats fair

 
Old 07-08-2008, 06:45 AM   #14
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23weekermom HB User
Re: child with tourettes??

Quote:
Originally Posted by hebrew View Post
It good that you feel strong enouth to come out from behind the curtain, you will know you have good and bad days, but is something that is always with you, you have to face up to it at some point. So what if some stranger is looking at you for a breif moment, their not being personal, it something we all do, look when something is not the norm. You are the one that is thinking they are thinking bad things about you, they will turn and get on with their day, and your will be forgotten, how many people do you see in a day, do you remember any of them. As for your friends, if they understand that what you are going through is involatary they will see past the ticks and understand how hard it is for you.

You are always aware that they are happening, and when you are in unfamiliar surroundings or with people you dont know they become worse, mainly because you know they are going to get worse, the stress puts them into overdrive. You need to acept this is who you are, and stuff the ones that are rude enough to stare or make coments, show your family their is nothing to be ashamed off, the younger they are and the more information they have the better they are at shrugging it off. As for your boys school, they proberbly only see mild tics, if none at all. Children can supress them at school which makes it hard for them to understand, and they say no they are fine, or they behave well, but the child you receive home is completely different, thats because thay have the ability to suppress it and hide it, that is a sign that they too are feeling embarrassed about what they are doing, you too are a good parent, you are takling the school, the more people that understand the more at ease the child feels that they can relax in their company and not supress their ticks. Their is a lot of people out their with tourettes, some very mild and they hide it so well. good luck, new hair style new and confident you, think of some funny comments your boys can throw back at people if they are not understanding, they will be wonting someone to say something in the end, as they get confident, let them know just because their mum has not grown out of the ticks, chances they could, because they will learn not to be ashamed and hide, you are just begining, dont let it run your life anymore. You are GREAT, beleive it
wow my son was just diagnosed with tourettes and adhd,,,now he start about 4 years ago with tics [the dr told me nervous tics]he stated with eye blinking then this hand thing then to the legs then he did this where he had to stand on his toes ,then grunts and throat clearing then shakes of his head ,spitting,now its crouching then up again our biggest issue is school he can,t make it through a day without some sort of issue and then sent home,,when he does come home from school hes wired due to holding it in all day and hes takes it out on his older brother any sugestions how to deal with him calm him down and refocus him ,needing more info on boys with tourettes and how to deal with them thanks

 
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