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Updated March 19, 2010
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Updated March 19, 2010
I feel like we may be experiencing a bit of an increase in tics too, but I'm just wondering if we can work through it and come out the other side with a decrease. I'm currently giving her 2 tsps of the children's mag/calcium liquid and 25mg/day of b6. I'm wondering if it's enough b6 though. She's small, only 6, and about 50 lbs. I was nervous to give her more than that. I'm so impressed with her! She's never taken a pill by mouth before last week and it took 2 days and she got it down and has no issues now.
Hi there, I don't have a lot of experience or advice to share, as we're new to this community, but just wanted to reach out because I know how hard it is to suddenly be handed a diagnosis that will change the rest of your and your child's life. My 6 y/o daughter began with her tics when she was just 4 years old. I knew in my heart once they began that this was what it was, but I kept hoping it was just a transient situation. We kept track of the kinds of tics and frequency as well as the waxing and waning of the tics for over a year so that when we saw the doctor we had grounds for a referral to a neurologist. I also made sure I mentioned them and my concern to the doctor every time we saw them. As far as I know, to be diagnosed you need a year of vocal and motor tics, or at least we did. Once we hit that year mark we had had relatively no tic-free time periods and our ped was happy to send us over to a neurologist. I hate when I hear that people have to fight for it. You know your child and your gut instinct is usually correct. We took it pretty hard in the beginning. I would cry constantly watching my small child taken over by the tics. But I quickly learned that educating both yourself and your child about the disorder helps. And helping them to understand that it's not something they can control and not something they should be ashamed of is important. I'm still terrified about what the future will hold for her, as I would say her motor tics are fairly severe at this point and have come to this point from being fairly mild just a year ago. But she doesn't seem to be bothered by them right now, it's really just myself and my husband who are bothered by them. As long as she's okay, I should be okay too. I can't imagine what it must be like having them suddenly appear in a teenager. I'd definitely push to have him evaluated and try to get some answers as soon as possible. Good luck to you!
Hi everyone, I joined the forums a while back but have mostly been just lurking and reading up on everyone's experiences. Background for me - my daughter is 6 years old and was diagnosed at 5 with TS. At the time of her diagnosis she had some very noticeable tics but they were pretty stable and not really...I don't know...not really prohibitive for her. But just in the last 4 months they have increased quite a bit to some very complex motor tics. She only has one small vocal tic at this point. Of course the complex motor tics have me quite concerned about the severity of her TS and whether or not this is something that will continue increasing or whether she'll be lucky and have it calm down after adolescence. Currently she's a bit of a mess of tics. Jumping, some facial twitches, clearing throat, she's got one where she throws her hand in the air (accompanied by a vocal tic), and she's twisting her body in a weird way (doing something with her stomach I guess), snapping her teeth together, and one where she stares off (looks like she's completely checking out). Anyways, earlier this week after speaking with her doctor, I got a mag/calcium supplement and B6. Currently she's taking 2 tsps of the mag/calcium each day and half of a 50mg B6 tablet. First, I'm wondering if this is enough. We're also doing epsom salt baths but not regularly because she has eczema and can't bathe every day. Also wondering how long it might take to see improvement IF we'll see any at all. She's had 3 doses so far. I'm guessing it might take some time but I don't know. We're new to this! I'm just hoping something will help calm her body down. I hate to see her little body in such turmoil and can't imagine that focusing in school is easy with all that's going on with her.
We're definitely interested in a more natural approach to things. She's too young, in my opinion to explore medication. Also, anything that I've read about medication so far has sounded scary to me. We are dealing with some hyperactivity, OCD, and behavioral issues as well, but it's not affecting her too much in school so far and I guess that's what's most important. I think when she comes home and is awful and emotional/angry it may be in part because she's holding her tics back a bit in school for hours. I know she tics a bit in public but not to the degree that she does at home because her tics currently involve humming/singing, and being able to stand. It's got to be hard for her.
Hi there, My 5 year old was just diagnosed (on Monday) with Tourette Syndrome and I'm feeling a little lost. Lost, sad, frustrated, scared, nervous, etc. I know my emotions will settle down eventually and we will start to work towards acceptance and treatments. We have been suspecting this for quite some time. Tics began in January of 2016 when she was just 4 years old. But hearing the diagnosis confirmed has been hard. I want her to be proud of who she is and understand that she's not weird or bad or anything, so I've been trying to speak positively about the diagnosis while being honest with her. She says the tics don't bother her and she isn't getting picked on for it in school (yet). I just wanted to find a place to reach out and connect with others who have experience with this. Thanks for listening!