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I've been there

Hi, just found this forum....not much action here!

I'd just like to offer advice to anyone with concerns about their child. I have a ten year old son with Tourettes and it was confirmed by paed neurologist at age 8 though started his various tics at 6. We worked out the diagnosis about half way through that time. He's brilliant and only has mild Tourettes, if anything getting better not worse, though obviously waxes and wanes.
The thing is, we went through the mill, initially devastated then guilt then frustrated and got through two or three referals before we found anyone who knew what they were talking about. I have now read many of the books and can offer some insight and advice to anyone who might find themselves where I was a few years ago.
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Avatar_n_tn
Glad to read your post. My son is six. He started signs of blinking and finger chorea at one years old. The tics seemed to come about with strep. I thought it was PANDAS even a Dr. initially said it might be but to wait and see. Finally at age six and attention issues and obsessions creeping in and tics going on pretty strong on and off for a year the neurologist called it tourettes and gave him meds called Abilify. It seemed to work well at first but wore off and we had to up it a couple times to 5 mg now. Then this fall the tics were worse and the anxiety and we added zoloft 12 mg. It doesn't seem to be working. He is more argumentive and defensive and harder to get along with. Today the Dr. said we should try to stop it and let him know Mon. If this is immune related what can we do? Did your son have temper tantrums? This is very hard. The school says he is fine and look at me like I am making it up. He keeps getting up on his bent toes and cracking his toes and fingers. This is going on for six weeks now. Can you help?
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644988_tn?1236368148
Not sure how much I can help on the medication front...we avoided it like the plague. Thankfully my son didn't have rages, I think he internalises that. Your story sounds familiar and I'd say you've done well to crack the diagnosis so quickly; though it won't have felt quick. As for the school not knowing what you're talking about...I've got the T shirt. We only managed to have the diagnosis confirmed by taking a video of son at home to the specialist. If he's ticcing at home that's because he's relaxed, if he's not ticcing at school, he's suppressing. If he's supressing, it's like needing to scratch an itch but not being allowed to; very distracting and bad for concentration.
The various tics will wax and wane but you have to consider are you medicating to make him feel better or to stop the tics. We have grown to love the tics...I know that sounds crass but it's just another part of him...we've talked in depth with our son about Tourettes (he's nine now but started at 6, like your son) and we reassure him that it's "OK to tic" and have declared the house a "free to tic zone". Had a good chat with his friends' parents too and they get it; even their kids have had it explained and I'm always really happy to see him ticcing in other peoples' houses cos it means he's feeling "at home" (and it proves I'm not making it up!)
Tourettes is a whole spectrum from minor to severe and I would place my son on the less severe end of the spectrum, but he's very talented with music and an incredibly sensitive and compassionate child and I think the whole package is part of him. The school has been less understanding; more ignorant if you like, he had a teacher two years back who took a real interest in him and the syndrome and appreciated his "non-specific" learnig difficulties and attention issues...he came on in leaps and bounds with her. Sadly others have been less understanding but he knows now that it's "OK to tic" and that, in itself, seems to have reduced the problem. The specialist was optomistic that most recent studies show that many kids grow out of Tourettes as they approach adulthood. We wait and see, but consider our role to be one of emphasing his strengths and encouraging his talents whilst doing everything in our power to build his confidence and ensure his acceptance "tics and all" everywhere he goes.

Those sound like strong medications for a six year old to be taking and are bound to affect his behaviour and moods..I guess only you and your doctor can decide how bad his tics and obsessions are...just be sure in your own mind that your treating his problem not everyone elses.

hope this helps, I'm just a mother who's been there, but, at the end of the day, "there" is a different place for each and every one of us, goodluck and feel free to PM me if you think it would help. Kx
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Avatar_n_tn
I have just had one of the worst weekends of my life.
I have just returned from visiting my parents with my beautiful 8 year old son whos behaviour was really bad at times though when he is good he is just ace, i am really confused!
He has got a tic or a twitch or whatever one is supposed to call it, he moves his jaw and kind of rolls down his bottom lip. before that he clicked his fingers and before that he twiched his neck as if flicking the hair out of his eyes(sometimes it was quite alarming) which started when he was about 6.
looking back at the times when his behaviour was at its worse is when we have been away from home, or maybe it just seems that way as it is more difficult(stressfull and unpleasent) trying to disapline your out of controle child infront of parents etc.
Things are particularly bad at the moment as any punishment for bad behaviour does not seem to bother him eg.taking away favorite toys, not allowing him his tv programs, keeping him in(grounding him) I do not know what to do! he just becomes more and more hyper.
I am not sure if i am just over reacting and its just normal naughty behaviour or if i am in denial that my son has a condition such as touretts syndrom (syndrome). Can you help in any way?
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644988_tn?1236368148
Hiya, I'll answer your qustion re Tourettes first: it sounds from what you say as though his behaviour/activity levels have always been a struggle to manage. I'm not a medical expert and can't diagnose for you but I do know that many kids with ADD and ADHD have various motor tics. The "diagnoses" are kind of hierachical; there's no logic or benefit (IMHO) to trying to label a child with Tourettes if the tics are a secondary result of other problems. The downer here is that some of the approved medical treatments for ADDH and hyperactivity will actually cause or worsen pre-existing tics!   Certainly my son's first noticeable tics occurred whilst away on holiday and many of his "new" tics appear during vacations. We've had no behavioural problems at all so I can't advise. The Tourettes diagnosis requires both motor and vocal tics which may come and go, wax and wane, but exist for more than 12 months and aren't explained by a "bigger" diagnosis.
From the point of whether this is "just normal naughty behaviour" it's hard to comment. My other son is one to challenge boundaries but is usually at his best and most self-moderated when away from home and with others (except from the "overtired" or "too many E numbers" scenarios we sometimes encounter) What do other friends and family think of his behaviour? Does he seem "different" from other kids his age and what does the school say?
Hope this helps, Kx
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