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I’ve been reading these forums for the past year now (without ever registering to post) and I’d like to say thank you to everyone who has posted valuable information on this site. It is such a great resource.

 

My ds developed a tic (opening his mouth really wide) in mid 11/08. I started researching online after Thanksgiving of ’08 and came across a site that said it could be a tic. The docs assumed it was transient and would go away (if it was even a tic). We decided to go ahead and get his school vaccinations done during that visit. (Wish we hadn’t.) About 1.5 - 2 weeks later, the tic was off the chart... many times a minute. That severity only lasted a week or so, but he has had this same tic ever since he started ticcing over a year ago now. He had a grimace tic for a few weeks in February and a breathing tic in August, in addition to the mouth tic. So, we are now expecting a diagnosis of Tourette’s when we see the neurologist in a month.

 

I did consider PANDAS because his tic followed an illness, but his tics are not episodic and he has had strep (10/09) with no exacerbation of symptoms. I convinced the doc to do a titer test in late Dec. ’08 (approx. 6 weeks after the tic started) and it was normal, though I’m not sure the timing was right. (It was an ASO.)

 

I’ve read that some kids have tic free periods. He hasn’t. I’m curious how many others have the same tic continuously with no remission. The severity has waxed and waned a little (from every 2 minutes to every 10 minutes... sometimes 15 minutes), but that's about it. Other than the period in December, it has remained fairly constant. Is this normal for some?

 

This was really out of the blue for me and my dh, as neither of us has any family history of tics or TS, though there is other related stuff …anxiety and some OCD-like tendencies (very mild though… not sure they would officially qualify as OCD). Thankfully, we haven’t seen any OCD in my ds.

 

Thanks for any feedback.

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Hi and welcome

 

usually with TS the tics wax and wane and different tics come and go, so it would be unusual IMHO for a TS diagnosis for just one continuous tic? Do be very cautious if the neuro suggests meds for the tic!

 

you may also want to post on our PANDAS forum as the parents there are best to answer those questions for you

 

the anecdotal reports we have here definitely suggest that for some kids, vaccinations can be a big tic trigger!

 

I have a link in my signature below on what has helped my son

 

 

not sure if you already have Sheila's book, but I would highly recommend it

http://www.latitudes.org/book.html

 

hope you find the answers you need to help your son

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Hi and welcome

 

usually with TS the tics wax and wane and different tics come and go, so it would be unusual IMHO for a TS diagnosis for just one continuous tic? Do be very cautious if the neuro suggests meds for the tic!

 

you may also want to post on our PANDAS forum as the parents there are best to answer those questions for you

 

the anecdotal reports we have here definitely suggest that for some kids, vaccinations can be a big tic trigger!

 

I have a link in my signature below on what has helped my son

 

 

not sure if you already have Sheila's book, but I would highly recommend it

http://www.latitudes.org/book.html

 

hope you find the answers you need to help your son

 

Cheri - Thanks for your reply! I do plan to order Sheila's book. We have already changed diet (gone organic, avoid HFCS and MSG). We also started a multi vitamin and mag taurate supplement, plus occasional probiotics.

 

The reason I suspect TS is because he has had 2 other tics that have come and gone (one motor, one vocal) in addition to the mouth opening tic (the one that has been constant). He had a grimace tic in Feb. that lasted about 2-3 weeks and a breathing tic in Aug. that lasted approx. 6 weeks. I just thought it was odd that he has the one tic that is constant while the others have come and gone.

 

Has anyone else had this experience with one tic persisting while others come and go?

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Hi and welcome

 

usually with TS the tics wax and wane and different tics come and go, so it would be unusual IMHO for a TS diagnosis for just one continuous tic? Do be very cautious if the neuro suggests meds for the tic!

 

you may also want to post on our PANDAS forum as the parents there are best to answer those questions for you

 

the anecdotal reports we have here definitely suggest that for some kids, vaccinations can be a big tic trigger!

 

I have a link in my signature below on what has helped my son

 

 

not sure if you already have Sheila's book, but I would highly recommend it

http://www.latitudes.org/book.html

 

hope you find the answers you need to help your son

 

Cheri - Thanks for your reply! I do plan to order Sheila's book. We have already changed diet (gone organic, avoid HFCS and MSG). We also started a multi vitamin and mag taurate supplement, plus occasional probiotics.

 

The reason I suspect TS is because he has had 2 other tics that have come and gone (one motor, one vocal) in addition to the mouth opening tic (the one that has been constant). He had a grimace tic in Feb. that lasted about 2-3 weeks and a breathing tic in Aug. that lasted approx. 6 weeks. I just thought it was odd that he has the one tic that is constant while the others have come and gone.

 

Has anyone else had this experience with one tic persisting while others come and go?

 

 

I can say that my son pretty much always has the vocal that began as a "mmm" at about 4 or 5? before and after this, most motor tics are eye/head/neck, they seem to shift around, resolve for a while and come back....but the vocal stays and has changed in the sound going from mild to pretty much at its worst right now. he is currently 10 1/2. ( I will add that I am currently exploring the PANDAS route myself, but cannot attest to any results on antibiotics as yet.).

 

Faith

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Hello,

 

My theory regarding the vaccination, seeming to increase tics, is due to the liver not being able to process out the toxins in the vaccination. The liver has something called sulfate ions in it to help process out the toxins in foods, environmental things, and also vaccinations. When the liver is not able to keep up with it, due to this lack of sulfate ions, then you will get reactions in someone who is prone to tics. This is only a theory but I have done quite a bit of research on this and realize this has to be at least part of the issue going on after the vaccination has occured and tics then increase. I am sure it is much more complex then this in the long run but I do think this is at the basic level on of the things going on. A while back I put my theory on the forum. Here is the link http://www.latitudes.org/forums/index.php?showtopic=2946 .

 

Have a great week!

 

Carolyn

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Carolyn --

 

Wow, I think that was the most impressive post I have read on a forum in my life. I never thought about Histamine before. I know my son has developed a very strong allergy to cats over the last year and alot of those histamine foods from your link are big on his diet. I will have to ask my wife if she noticed Zack's tics dropping if he had benadryl for allergies. I read your post less than 5 minutes ago and I know I am probably going to have to go over it a few more times yet to take it in!

 

Thanks,

 

Craig

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Hello,

 

My theory regarding the vaccination, seeming to increase tics, is due to the liver not being able to process out the toxins in the vaccination. The liver has something called sulfate ions in it to help process out the toxins in foods, environmental things, and also vaccinations. When the liver is not able to keep up with it, due to this lack of sulfate ions, then you will get reactions in someone who is prone to tics. This is only a theory but I have done quite a bit of research on this and realize this has to be at least part of the issue going on after the vaccination has occured and tics then increase. I am sure it is much more complex then this in the long run but I do think this is at the basic level on of the things going on. A while back I put my theory on the forum. Here is the link http://www.latitudes.org/forums/index.php?showtopic=2946 .

 

Have a great week!

 

Carolyn

 

I read your previous thread and it's a very interesting theory. My ds has had allergies since 2 (he's now 5.5) and we've used Zyrtec periodically. I haven't noticed much effect on his tics, but I'm wondering if it would help to up his dose a little. Did the No-Phenol help? Are you still using it?

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