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Hi,

I've been reading the posts on this forum for a while but this is my first time posting. My daughter had an abrupt onset of tics Sep 29, 2016. Multiple tics showed up at once. The most visible was one that I haven't seen on the many lists of typical tics I've read. She would tap her face many times repeatedly. Over the last 10 months we've seen many tics at the same time; sniffing, shoulder shrugging, pulling clothes, lip licking, lip pinching, tongue side to side and more. After googling the first few weeks, I was convinced she was classic PANDAS. I found an immunologist who ran pet scan and blood tests and diagnosed her. Put her on abx for 6 months and one treatment of IVIG. I don't believe the treatments had much effect and the tics keep waxing and waning, although we never saw them as bad as the initial onset (first 4 weeks). The new one now is she touches her chin with one had and then the other. Everything is in doubles. She'll scratch her face (gently) one side and then the other. Pass her finger up her forehead twice etc. We saw a neurologist who disagrees with the PANDAS dx. We've had her on magnesium (150mg) since we finished abx for the last 3 months. It seemed calmer but the last 3 weeks or so the frequency has picked up. I've read so much about diet, casein free, gluten free, supplements. All the info is so overwhelming. For every post that says natural treatments help, there is another that says there is nothing to do about tics. I can really use some guidance as to where to go from. I've gone from a lively, optimistic, energetic mom/person to what feels lifeless. Like everyone, I just have hope every day that it'll just stop spontaneously. I just feel like doctors can't help me. Thanks for any advice I can get:)

 

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  • 2 weeks later...

Hi Hope36

How is your daughter now?

I am new here because my 8 yr-old son developed Tics about 1 1/2 months ago. On the worst days, he was ticcing every second. As a dad, I worry so much with tons of anxiety myself.

I gave my son Fish Oil and some Cod Liver Oil. We also give my son herbal medicine. So far, the situation has improved some what.  Tics frequency improved from every second to 2 or 3 tics a minute. Sometimes we see 10 minute tic free intervals.

Following Dr. DeMare's book on Natural treatment for TS and tics, I am now doing detective work to figure out the triggers for my son's tics. I do believe that my son's tics was epigenetic and brought onset by environmental/dietary triggers. It will take time to slowly identify the triggers and then hope that there is ways to address each of the triggers.

Hope that your daughter's situation has improved.

 

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  • 1 year later...
On 8/24/2017 at 3:11 AM, lwei66 said:

Hi Hope36

How is your daughter now?

I am new here because my 8 yr-old son developed Tics about 1 1/2 months ago. On the worst days, he was ticcing every second. As a dad, I worry so much with tons of anxiety myself.

I gave my son Fish Oil and some Cod Liver Oil. We also give my son herbal medicine. So far, the situation has improved some what.  Tics frequency improved from every second to 2 or 3 tics a minute. Sometimes we see 10 minute tic free intervals.

Following Dr. DeMare's book on Natural treatment for TS and tics, I am now doing detective work to figure out the triggers for my son's tics. I do believe that my son's tics was epigenetic and brought onset by environmental/dietary triggers. It will take time to slowly identify the triggers and then hope that there is ways to address each of the triggers.

Hope that your daughter's situation has improved.

 

Which fish oil and cod liver oil have you found helpful ?

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Hi Iwei66,

somehow I just saw this post from 2 years ago. It’s been almost 3 years since tics began for my daughter. Tics are still there waxing and waning. We went through a 6 months period with barely any noticeable tics and I actually thought that was the end of the road. But this past June, about 8 different tics showed up and still going.

i haven’t really given the nutrition or vitamins a fair chance probably because I’ve personally met a few parents who’s kids have TS and they told that in time (their kids are in late teens now) the tics have greatly diminished if not stopped all together and that they hadn’t found much that helped over the years. I’m praying for that but in the meantime it is extremely scary to watch my daughter ticcing. The unpredictability of the type and frequency is what scares me. That being said she is a very happy confident girl and that helps her a lot. We are going for an evaluation at the end of September. The dx, if given, will get her extra help in school.

i know it’s hard to watch and as parents we suffer in silence over this but it is so important that they don’t feel it from us. I would say spend quality time with your son and enjoy him. He’s still the same with tics. Sorry I can’t be if more help. Wishing you all the best:))

 

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It’s been horrible.  He always had little tics.  But then during adolescence suddenly he developed ocd after an injury.  Then a few weeks later antibiotics brought out tics in combination w an injury.  Each dose of antibiotic brought out more tics.  Always when the dose completed.  They would mostly subside eventually.  The last time the tics came on w a vengeance and never went away. The tics can be every second, four seconds, eight seconds or eleven seconds.  It’s horrible.   I’m so down. People stare.  I see them staring. It’s so sad.  Now he holds them in around me because I’m so obsessed w them.  

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I feel the same as you. My daughter is 9 and I like you just can’t stomach to see the tics. It’s really hard to accept. I can’t handle anything , can’t eat or function properly. My husband is stronger than me and holding down the fort here. For now, here’s what I’m doing even though it’s killing me...I’m taking her to the neurologist who saw her a few years ago and who told me to come back in a few years were if tics were still there. He will send us to the Tourette’s dept in the hospital. I’ve been dreading going there for the last 3 years. I’ve been lucky to meet another mom of a 15 yr old who’s had T.S. since she was little. She comforts me a lot by showing me that her kid is doing ok now. We have a cousin who’s son had bad bad tics as a kid and he was on meds, which didn’t work, and suddenly the tics stopped at about 13-14. 

Im really trying to think that this is not forever but I worry about how it will be socially and academically until it gets better.

I'm trying to shift my mind to get help. Help for my child and for me. It’s not easy to do this on our own.

you're not alone. This will make us stronger. Your son needs you like my daughter needs me. We have to be strong and positive. Work on ourselves too to be strong for them to give them the confidence they need to get through this. Because in the end they will be fine. Prognosis is good for TS. They will have a full life. I’m told by the 2 moms I know who’s kids have TS, to be patient. It’s hard but we keep trying. 

Im here if you want to vent, chat or anything.

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The thing is that his started at 14.  Sudden onset.  Severe.  Had tics when young.  Small.  Barely noticeable.  But after taking antibiotics ...tics happened.  Eating is a challenge now since he has entered the teen years.  I don’t think he believes there is a connection w food and tics or environment and tics.  Teens just want to be able to do things and not be different even though tics make them different.  

The hospital you are going to with your daughter, what do you think they will or can do? 

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