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Old 01-08-2011, 01:49 PM #1
cudybug cudybug is offline
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Default New to TS

My 5 year old was just diagnosted with TS last week. Im feeling relieved abit that its not something severe however Im still alittle overwhelmed by this. In the words of my sister "it seems to random". No one we know has TS and although I guess I could think back to when she was younger and a few , what I though were quirks, could very well be the TS. She just started with the facial tics and it gradually got worse and worse and now is a hmmmm sound a clicking noise and a pppfffff (which she has said she likes that one). She has no idea other then the one sound that shes doing it. I become extremely concerned when I asked her to stop humming over and over and I said "stop it" and her exact words were "stop what?" with a look on her face of 'your an idiot im doing nothing'. Now I guess its bad on my bad that I didnt ask more questions but I was feeling alittle overwhelmed with hearing that she does infact have TS. My sister asked how or why she has it and I thought wow that is a good question. Can anyone here give me some kind of answer? We go back in 7 weeks to her neurologist (who I might add we love already) and Im planning on bringing a list of questions. He does not put kids on meds for TS usually and I asked what we could do for it and he said to just ignore it because right now she doesnt know shes doing it and it will cause more anxiety and will make it worse. I do not want to put her on meds so that was perfectly fine with me but I wonder if there is other relaxation things I could do to help her out. I mean I can't believe completely that she has no clue its going on. She has the grimace, eye blinking (thats become really bad lately), shoulder shruging and eye brows go up and down. He also lately has been rubbing her nose really hard and I thought she was just doing it on her own and at bed time I told her to stop rubbing (she was rubbing her eyes and nose really hard) and she wouldnt stop so I tried moving her hands away and she seemed to struggle and fightback to keep them on her face. I just now read that rubbing the nose can be from TS and I feel bad trying to make her stop. Shes been a completely healthy kid and honestly has never even had the flu. Other then a few years ago we battled several UTI's (from holding in BM), thats all health wise. Shes not overwieght or anything either. So this is why my sister says its so random. We homeschool right now (for my own reasons) and I was planning sending her to our local public school (across the street literally) next year to make some friends but now Im afraid to send her for fear she will be picked on but how else will she learn to deal wtih that if she doesnt go to school. Shes already on the smaller side so I know she will be picked on for that. Im thinking maybe waiting untill she's fully aware of her Tics before sending her but when should we talk to her about it? Her dr wants us to ignore it and I was all for it untill reading more things online about kids disgising tics (which might I say is brilliant). Acedemically she is very bright and has no problems in school other then normal 5 year old tears and such. Shes reading 3-4 sound words and knows about 20 sight words. Wizzing by in math and can add subtract and compare with no problems. Any insight would be great.
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Old 01-19-2011, 09:20 AM #2
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Hi cudybug

sorry your post was not replied to before now

It sounds like you have a good neurologist and good that he is not suggesting medications yet! as most people with TS do not need them

You may want to also look into allergies as I am hearing from more and more people whose children seem to tic because of these, especially allergy to dairy as well as gluten.

has your child ever had strep? Do you live in a Lyme disease area and do you know if your child has ever had a tick bite?
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Jaspar (01-19-2011)
Old 01-19-2011, 09:35 AM #3
Jaspar Jaspar is offline
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Chemar certainly said some useful information. Food sensitivities (like dairy and gluten) can certainly exacerbate tics. And not to worry - tics and Tourettes can lessen over time. Many kids have transient tics but even with Tourettes, which is more long-term, it can diminish after puberty or in adulthood (sometimes get worse).

Have you read the book "Saving Sammy"? You might look into that.

TS runs in our family tree.

You might also look into http://www.greatplainslaboratory.com/home/ which is loaded with information. You might also, perhaps get some ideas from http://www.itsnotmental.com and perhaps even Bock and Stauth's book on Healing the Childhood Epidemics although not specifically about TS. There are so many books on TS!

Our latest family members with TS and tics are all 3 young adults now. Handsome/beautiful, smart, kind, and successful in love and in life.
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