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kokopele

Greetings from Toronto, Canada

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Hello out there! I am a mother of twin girls, 7.5 both of whom we suspect have Tourette's.

Both girls began to present with a variety of symptoms last June including motor, vocal tics, moderate anxiety and mood swings.

Those were very difficult weeks as we processed our new reality and just tried our best to support them without

calling much attention to what was happening. We decided to wait to see a neurologist, fearing it would be too much

too soon for them and have spent the year learning as much as we can. I think it was the right decision.

I am pleased to say that they have had a good year. Both girls have some good friends, many interests, and are doing well at school.

They have been gluten free since January and it seems to have helped a lot. It has been a quiet and calm 6 months in relation to their

tics and anxiety but things seem to be ramping up again for one daughter especially just in the last two weeks. We are going to try cutting out dairy when the

last bag of milk is done to see if it makes any difference. We have also just begun some supplementation with Magnesium.

I am wondering if there is anyone in Toronto on the forum who has had a positive experience with any professionals (environmental physician, allergist, naturopath...)

as we are feeling a bit overwhelmed and do want to seek natural treatments for the children.

Another thing I am wondering is if anyone has some insight/experience with regards to an increase in tics while reading or being read to?

I am looking forward to being in touch with other parents and sharing experiences on the journey ahead.

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Hi,

 

I definitely see an increase in tics when reading to my 5 year old son. I honestly have no idea why. it went away for awhile but then resurfaced about a month ago.

 

His tics also started last June.

 

We are from Nova Scotia but originally from Toronto. We have actually flown out there twice since then to see Dr Jaconello who is an environmental physician. He is great.

 

He has put our DS on several supplements that have helped. If you'd like to talk more about the specific protocol you can PM me.

 

Some of the recommendations have helped, others not so much.

 

We are still trying to figure everything out and it looks like our little one could have PANS but let me know if you have any other questions.

 

It's been quite the year for us but even talking to other people who understand what we are going through helps!

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We are from the Niagara area and are seeking help in Buffalo, NY. Ticcing (both motor and vocal) were one of DD11's PANS presentations. Her ticcing started in Sept of the year that she had an unidentified rash from an insect bite (non-EM) (in August) and her MMR booster, also August of that year. She had the full contingent of PANS symptoms, except for noticable OCD. She did have a little OCD, but only I would really notice (drawing the same picture over and over).

 

Our LLMD said that DD's PANS symptoms were caused by her bartonella infection and that lyme/bartonella treatment would resolve the PANS. It has. We have weaned off combination abx after 2 years and are continuing with herbal protocols. During treatment, DD's herx reactions (toxins released by bacterial (especially gram negative) die-off can produce or increase symptoms) was emotional lability and ticcing. At times when her ticcing became quite bad, she was unable to speak in sentences or read aloud. At other times she was unable to read to herself because the eye-blinking and head jerking made it impossible.

 

When we started treatment 2 years ago, I began charting using an Excel stacked bar chart (thanks to one of the Moms here for the suggestion) plotting symptoms on the y-axis against date on the x-axis, with notations on changes in abx/herbal protocols or other illnesses whenever they occurred. This charting made it obvious to me that motor/vocal ticcing was the result of toxin release during bacterial die-off (whether caused by abx or by the immune system itself). IE - 1-2 days after changing or increasing abx protocols, ticcing and emotional lability would increase significantly, and then gradually resolve while the protocol remained unchanged.

 

DD's ticcing became quite significant during abx treatment and I am sure that if we had chosen to go that route, her dx of motor tic disorder would have become a Tourette's dx, as she had both motor and vocal ticcing for 2 years. Our pediatric psychologist suggested the Tourette's Clinic in TO, but shortly after that we were headed in another direction :) .

 

Our LLMD does suggest a gf/cf diet to decrease inflammation, so we do that. I'm not sure we saw a real difference, but continue with it anyway.

Edited by rowingmom

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