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LoriLF
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HI All, I have been following the posts here from Canada for some time and unfortunately i have coverage for treatment but very little treatment options. The info and support has been very helpful but not available where I am at. My Daughters PANDAS was easily recognized/diagnosed but we have since hit a brick wall Looking for others from Canada who may have some suggestions/recommendations/referals. Very frustrated with the lack of understanding of PANDAS among the medical field here

Lori

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Hi Lori.

 

I too am from Canada and we are trying to work through many of the same problems as you - no doubt. We do have a really wonderful pediatric neurologist who even went as far as contacting 3 of the big names from the US last week. 2 of the american specialists did reply - but it seems my son's doc. was looking for more concrete evidence as to why these treatments work/their reasons behind using these treatments etc. Sadly there really is no standard protocal of treatment yet and this bothers her a little (understandably - the 2 docs gave her very different "thoughts" re: treatment options).

 

Anyhow - my son's history is long so if you are interested maybe you can PM me - then maybe we can chat on the phone to compare notes and share info etc.

 

PKM

 

 

 

HI All, I have been following the posts here from Canada for some time and unfortunately i have coverage for treatment but very little treatment options. The info and support has been very helpful but not available where I am at. My Daughters PANDAS was easily recognized/diagnosed but we have since hit a brick wall Looking for others from Canada who may have some suggestions/recommendations/referals. Very frustrated with the lack of understanding of PANDAS among the medical field here

Lori

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Hi Lori,

I am from Canada as well. I don't have alot of time to post my thoughts but, I do have to say there is not alot of help for Pandas in Canada, that I am aware of. But I am still looking. Please PM me with any questions and we'll chat. I wish there was more help in Canada!!!!! Hope to chat with you soon, Char...

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Thanks I would like to hear from you .

Hi Lori.

 

I too am from Canada and we are trying to work through many of the same problems as you - no doubt. We do have a really wonderful pediatric neurologist who even went as far as contacting 3 of the big names from the US last week. 2 of the american specialists did reply - but it seems my son's doc. was looking for more concrete evidence as to why these treatments work/their reasons behind using these treatments etc. Sadly there really is no standard protocal of treatment yet and this bothers her a little (understandably - the 2 docs gave her very different "thoughts" re: treatment options).

 

Anyhow - my son's history is long so if you are interested maybe you can PM me - then maybe we can chat on the phone to compare notes and share info etc.

 

PKM

 

 

 

HI All, I have been following the posts here from Canada for some time and unfortunately i have coverage for treatment but very little treatment options. The info and support has been very helpful but not available where I am at. My Daughters PANDAS was easily recognized/diagnosed but we have since hit a brick wall Looking for others from Canada who may have some suggestions/recommendations/referals. Very frustrated with the lack of understanding of PANDAS among the medical field here

Lori

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  • 4 months later...

Has anyone had any luck with a great family doctor, pediatrician, neurologist or psychiatrist in Canada for children who persent with PANDAS? Does anyone have any personal experience that was positive with any doctor who is in the Toronto area (including Etobicoke, North York, East York, Scarborough), or surrounding areas like Oakville, Mississauga, Burlington, Woodbridge, Barrie, Hamilton etc?

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You might want to take a look at this article : Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions : ttp://www.bloodmed.com/contentimage/guidelines/2854.pdf.

The article writen of behalf of the canadian IVIG Hematology and Neurology Expert Panels states that, "IVIG is recommended as an option for treatment of patients with PANDAS."

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ANY LUCK WITH PANDAS FRIENDLY DOCTORS IN CANADA? I AM CLOSE TO TORONTO, AND AM SEARCHING FOR SOMEONE TO PRESCRIBE PENICILLIN FOR MY SON. WHAT IS GOING ON THESE DAYS? DOCTORS SAY THAT PANDAS IS A FAD, OR IT IS CONTROVERSIAL, AND THEY WILL NOT PRESCRIBE ANTIBIOTICS. I KEEP GIVING MY KID GARLIC AND ONIONS HOPING THAT THEY WILL BE NATURAL ANTIBIOTICS UNTIL I CAN HELP HIM OUT WITH THE REAL ONES. EVEN WALK IN CLINICS ARE RELUCTANT TO PRESCRIBE ANTIBIOTICS. IT IS ABSURD!

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