Is there anything i can do to help

I am currently waiting for a referral from our GP for my 11yr old daughter. That was a few weeks ago, so far we havent herd anything. In the mean time she seem s to be getting much worse and i havent a clue what i can do to help her. She is having a lot of trouble sleeping, which probably makes tics worse which then of course makes sleeping more difficult. Her tics are increasing both vocal and physical, the last few days i've noticed she is beginning to slap her forehead as well as stretching her eyes and mouth, jerking her legs, coughing and hoyking and generally being unable to keep still. Its exhausting to watch her and i feel so helpless. I tried massaging her shoulders and neck the other night but it only seemed to help while i was doing it, afterwards she went straight back to ticcing. Does anyone have ideas ? ways to get children to relax? anything!

6 Replies

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  • Does she enjoy arts, crafts, playing a musical instrument or sport? A lot of us ticcers find that our tics subside whilst we're doing an activity that requires both motor and brain power. 11 is a good age to take up an instrument, if she's in secondary school talk to her head of music about taking up an instrument, us ticcers are musical geniuses. (Is that right? Don't ask me I'm only a bass player) You're going down the right road with the massage, I find that helps me a LOT as tics can be pretty waring and it helps relax me. My aunt rekons that gardening also helps releive my tics, but this weather is a bit too unpredicable at the moment.

  • We've got a lavender & wheat bag (sort of sausage shape thing) that you heat up in the microwave (got it in Sainsburys) - we've used this with good success when my son's tics are bothering him. It's very soothing. Hot water bottle & some lavender oil/scent might have similar effect.

    He also had some CBT for a while and was taught deep breathing for calming anxiety - basically breath in and out slowly but deeply (fill all the way down to the ribs) in a steady rhythm for a count of about five. Avoid holding breath, instead imagine lying on a beach & breathing to the sound of the waves.

    You might want to download this questionnaire so that you have objective data to give to paediatrician when you get there:

    pandasnetwork.org/TIC-YGTSS-Clinician.doc

    If the link doesn't work, Google 'Yale global tic severity scale'

    Hope that helps & your referral comes through soon. Contact your surgery again if it's been more than 3 weeks - secretaries might be able to let you know whats happening.

  • Thanks very much for that questionnaire, looks like a very good idea, i have been collecting ammunition for our impending referral! Scarily i found an old diary from 2006 today where i have written about her tics even then!

  • nytol caplets - nytol.co.uk/ gives you info on the caplets works. there is lavendar spray on her pillow and aswell while sleeping play calming music like ocean waves.

  • I use a lavender and wheat pillow, it helps me a lot, a couple of drops of lavender aromatherapy oil makes it more effective. Or I use my oil burner. I'm constantly on the move due to my tics, I tic about once a sec - yep you read right once a second, I just go along with the tics, I did train in the ancient art of habit reversal training (it's not that ancient, it's pretty new actually) but it works better on teens and upwards because you need quite a deep understanding of your TS including any weird and wacky compulsions. HRT was a good way to banish tics like your daughter's head slapping. Like I said earlier us ticcers a creative, musical types so activities like drumming workshops, dance classes, zumba, piano lessons, flute/violin/guitar/any other instrumant lesson will seem like you feel that she has ability to do that rather than somebody who needs to be closeted rather than encouraged to fullfil their potential. If I had been diagnosed as a kid I know for sure my mum would have coseted me and wrapped me up in cotton wool and have very little faith in my abilities rather than show off to her friends (Catherine's got an audition at the Royal Northern ........) Yawn.....

    Some of the kids that come along to our support group meetings take part in martial arts, they find it helps them.

  • Nytol didn't work on me, when I'm off on one I need to be hit over the head with a plank - I wouldn't recomend that as it can give you a rather nasty headache in the morning.

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