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Hello,

I am writing from Italy - I have purchased the hardback copy of your wonderful work.

My 7 year old son has started with tics. The motor tics are moving from neck, hands, face, tongue. This has been ongoing for 2 months. The Strep cultures are negative and does not look like a PANDAS. I have met a neuro psychiatrist and a neurologist next week. I'm having so many sleepless nights since this has started. The content in the book and site is overwhelming but fantastic. In Italy there is resistance from the medical world in approaching TICS with these methods.

So far I've changed to organic food.

Trying to start some vitamin supplements possibly B and then next week ill try to get tests for the IgG food sensitivities.

The TICS that move from one muscle group to another is expected could this the transient tics - or do we have to wait for 1 year etc?

Thanks

Vittorio

 

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Hello Vittorio

So sorry that your post took a while to show on the forum! We just went through a software update and I am still getting used to the new moderator panel!

It's good you have Sheila's book and I do hope you will take a look at some of our Helpful; Threads pinned to the top of this forum.

Does your son have any vocal tics or only motor ones?

 

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Hi Chemar,

thanks for replying. My son did have vocal tics back in Feb/Mar - they appear to have gone even when he's watching the TV they have possibly disappeared.

I will monitor this with more attention - what do you think the vocal tic could indicate Chemar?

Last night the neurologist basically said "they are tics we don't know where they come from, they will wax and wane and will disappear - to wait 1 year" - basically he told me what I expected he'd say.

Next add multivitamin/nutrients and see if that helps.

Thanks

Vittorio

 

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Usually, before an "official" Tourette Syndrome diagnosis is given, there must be both vocal and motor tics present, with characteristic waxing & waning, for a year.

However, as we and many others discovered, there do appear to also be "triggers" for tics that can be noted and eliminated as best possible, to help reduce the frequency, duration and intensity of those waxing times.

Sadly, most conventional physicians are not well informed beyond the standard textbook views on TS, so it really is a case of equipping yourself with as much information as possible in order to find the best ways to help your child.

If you do have any Integrative physicians there, that is a big plus, as they are usually able to guide one on alternative treatments, while having conventional training as well.

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  • 2 weeks later...

Thanks again for the reply. I have had also Amino Acid urine analysis work completed however not too sure who would be best equipped in reading the results the paediatrician was not sure what to do with them and gave me the name of a Genetics professor - do you know if such a professional would be able to help?

 Referring to some US websites, I think I am seeing some values in this amino acid results for Gastro Intestine too high. I will have to go see a gastroenterologist probably next, maybe we have a leaky gut. Do you know of anyone I could contact in the US who could help understand these results ?

Thanks

Vittorio

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Vittorio,

Sono una mamma Italiana che vive in America. Non ho ancora avuto una diagnosi ufficiale, ma la mia bambina di 6 anni sembra appartenere alle caratteristiche PANDAS (tic improvvisi + Infezione da streptococco). Non ho ancora abbastanza informazione da condividere (i sintomi sono cominciati recentemente), ma se hai bisogno di aiuto con supplementi, traduzioni, o qualsiasi altra informazione che non puoi reperire in Italia, sono a tua disposizione.

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Hello Mammina

Thanks for offering to help Vittorio

I am going to post the translation of your message here as well:

Quote

Vittorio,

I am an Italian mother living in America. 
I have not yet had an official diagnosis, 
but my 6 year old girl seems to belong to PANDAS (sudden tic + Streptococcal infection)
 features. I still do not have enough information to share 
(the symptoms have started recently), 
but if you need help with supplements, translations, 
or any other information that you can not find in Italy, I am at your disposal.

 

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  • 3 weeks later...

Hello, thanks for the information. I am actually bi-lingual ;) was raised in UK and now live in Italy.

Mammina, Appreciate your assistance - in Italy as you know it's the most forward thinking

We performed some blood tests before starting antibiotics, looking for anti dnas-B , looking for any strep infections both the culture and bloods all turned up negative, whilst waiting for results phase, we administered anti biotic augmentin as suggested by the neurologist.

We are supplementing with multivitamins solgar cangurini and for omega 3 solgar pesciolini

Saw neurologist yesterday he agreed to an EEG - being performed in a couple of weeks

He was also opened to the idea of testing for "leaky gut" or partially , more so than the Gastroenterologist I saw last week.

Making arrangements for the natrixlab flora scan privately..

http://www.natrixlab.com/range-of-diagnostic-tests/intestinal-health/flora-scan/

The neurologist will be offering an alternative via the "hospital" route.

The urine amino acids I'm still not sure if they are ok or out of range values I'm pretty surprised that the "specialists" whom I shared with are not able to tell me what these values mean :(

Beta-alanine - son has 20.8 - normal value is 0-4

Alpha-amino-N-butyric acid (A-ANB)  son has a value of 1 normal values less < 0.01

1-Methylhistidine - son has a value of 483 - normal should be 0-40

 

Thanks

Vittorio

 

 

 

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  • 9 months later...

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