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Toronto Or Sw Ontario - Are There Any Actual N Specialists To Be Found Nearby?

Neurologist Toronto ontario

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#1 stevey275

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Posted 13 February 2013 - 12:45 PM

So I see that this board doesn't get a ton of use, but I was hoping perhaps there were some folks out there who perhaps know of neurologists specializing in narcolepsy preferably in Toronto, but frankly anywhere in Southwestern Ontario (or frankly, Ottawa - I don't really mind having to travel further afield). 

 

I was just diagnosed in the fall and am working on developing a good regime of medications/scheduling to get this all managed, but at present am being overseen by a Respirologist (the head of the sleep clinic at my local hospital) and a psychiatrist. Basically the respirologist deals with the day (modafinil), the psychiatrist deals with the night (sleeping medications), and meanwhile my family doctor deals with everything else (birth control pills, migraines). 

 

None of the above are extraordinarily knowledgable about narcolepsy (especially the psychiatrist and my GP), and I really don't like that the treatments have been subdivided into multiple doctors. However, I have not found any listings anywhere for someone actually promoting the fact that they specialize in Narcolepsy in my area.

 

If anyone knows of any good doctors for N in the Toronto area, I would be very appreciative.  



#2 canadian

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Posted 14 February 2013 - 09:39 PM

Dr Brian Murray at Sunnybrook Health Science Centre is extremely knowledgeable.
He is a neurologist and sleep disorders specialist.

Let me know if you need any further assistance. I am from the GTA.

#3 mdTO

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Posted 16 February 2013 - 08:22 PM

Dr Colin Shapiro is head of Neuropsychiatry and the Sleep and Alertness clinic at Toronto Western Hospital. He treats narcolepsy. There are several other doctors at the clinic that also have experience treating narcolepsy. 



#4 Tracey

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Posted 29 July 2013 - 11:59 AM

Hey There Fellow Canadians and our American friends,

I'm a resident in Innisfil, Ontario (slightly south of Barrie)  My 17 year old was diagnosed with N&C on Wednesday, (classic textbook case with all symptoms present).  My 15 year old Kendall and I were diagnosed with Delayed Sleep Phase Disorder (with about 21 involuntary wake ups each hour of sleep) about four months ago - all with Dr. Colin Shapiro, see his info and link at www.sleepontario.com   He diagnosis but does not get too involved in providing a lot of supports and direction from that point other than medication and simple letters to school and other treating physicians that I am aware of at this time.

 

I'm in the process of getting IEPs for both daughters and I am not aware yet of any kids in Ontario or Canada for that matter that have high school IEP's for DSPD and am still trying to determine this for a Narcolepsy diagnosis.  With respect to N&C, The Ontario Ministry of Education referred our Learning Disabilities Association of Simcoe County Advocate back to the school for direction (ha ha).  I have taken matters into my own hands and secured a neuropsychologist in Ottawa by the name of Dr. Christina Fiedorowicz who appears to be a real whipper snapper and is not aware of Delayed Sleep Phase Disorder nor any  Canadian IEPs for such a condition at this time.  It's standard practice in the U.S. under the Americans with Disabilities Act .  She has agreed to do the necessary research etc. to take this on.  I just heard again from her today and she will do report for Mallory too regarding her N&C.  She has a neuropsych. private practice and does educational assessments for the purpose of Identification and IEP accommodations as well as being a member of The Professional Advisory Council of the Learning Disabilities Association of Canada.  She was an Expert Witness who appeared before the British Columbia Human Rights Tribunal on Jeffrey Moore's behalf.  As you may be aware, the Moore vs. British Columbia School Board case made it to the Supreme Court of Canada and made a landmark ruling for kids with disabilities in the Canadian school system in November, 2012.  The link for Dr. Fiedorowicz summary of the case is found on the Learning Disabilities Association of Canada website at  www.ldac-acta.ca/downloads/pdf/advocacy/Education%20-%20Moore%20Decision.pdf   and is really worth a read at 3.5 pages.  She is taking the position that DSPD and now likely N is a physical disability that does not effect intellect but that the fatigue etc. does make learning and performing more difficult.

 

Is there anyone out there that has secured an Identification and IEP for N and DSPD in Canada?  I sure would like to share information with you.  It would seem that organization around N is about 30 years ahead of Delayed Sleep Phase Disorder.  I have become  a member of the Circadian Rhythm Disorder Network based in the U.S. that was established just a few years ago and they have provided a good deal of information on DSPD along with folks on their blog forum.

 

I have sent an email to Sick Kids Hospital regarding support/info regarding N and have not heard from them yet.  It seems they are affiliated with the Wake Up Narcolepsy organization that has a connection to Canada. 

 

Do any of you folks meet?  Is there groups that you go to in Canada? (I know, I'm really showing my newbie status here).  A group that meets from time to time in Toronto?  Are there any events regarding raising awareness and learning about N in Canada other than the event at Sick Kids earlier this year?  Do you folks organize a Walk like they do in Washington during National Sleep Week?  Would anyone be interested in do so in Ottawa in 2014 to raise awareness here in Canada regarding N and other such sleep disorders like DSPD?  Any thoughts?

 

Thank you all and I look forward to getting to know everyone.

 

Tracey

Innisfil, Ontario

 

 

 



#5 Tracey

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Posted 29 July 2013 - 11:59 AM

Hey There Fellow Canadians and our American friends,

I'm a resident in Innisfil, Ontario (slightly south of Barrie)  My 17 year old was diagnosed with N&C on Wednesday, (classic textbook case with all symptoms present).  My 15 year old Kendall and I were diagnosed with Delayed Sleep Phase Disorder (with about 21 involuntary wake ups each hour of sleep) about four months ago - all with Dr. Colin Shapiro, see his info and link at www.sleepontario.com   He diagnosis but does not get too involved in providing a lot of supports and direction from that point other than medication and simple letters to school and other treating physicians that I am aware of at this time.

 

I'm in the process of getting IEPs for both daughters and I am not aware yet of any kids in Ontario or Canada for that matter that have high school IEP's for DSPD and am still trying to determine this for a Narcolepsy diagnosis.  With respect to N&C, The Ontario Ministry of Education referred our Learning Disabilities Association of Simcoe County Advocate back to the school for direction (ha ha).  I have taken matters into my own hands and secured a neuropsychologist in Ottawa by the name of Dr. Christina Fiedorowicz who appears to be a real whipper snapper and is not aware of Delayed Sleep Phase Disorder nor any  Canadian IEPs for such a condition at this time.  It's standard practice in the U.S. under the Americans with Disabilities Act .  She has agreed to do the necessary research etc. to take this on.  I just heard again from her today and she will do report for Mallory too regarding her N&C.  She has a neuropsych. private practice and does educational assessments for the purpose of Identification and IEP accommodations as well as being a member of The Professional Advisory Council of the Learning Disabilities Association of Canada.  She was an Expert Witness who appeared before the British Columbia Human Rights Tribunal on Jeffrey Moore's behalf.  As you may be aware, the Moore vs. British Columbia School Board case made it to the Supreme Court of Canada and made a landmark ruling for kids with disabilities in the Canadian school system in November, 2012.  The link for Dr. Fiedorowicz summary of the case is found on the Learning Disabilities Association of Canada website at  www.ldac-acta.ca/downloads/pdf/advocacy/Education%20-%20Moore%20Decision.pdf   and is really worth a read at 3.5 pages.  She is taking the position that DSPD and now likely N is a physical disability that does not effect intellect but that the fatigue etc. does make learning and performing more difficult.

 

Is there anyone out there that has secured an Identification and IEP for N and DSPD in Canada?  I sure would like to share information with you.  It would seem that organization around N is about 30 years ahead of Delayed Sleep Phase Disorder.  I have become  a member of the Circadian Rhythm Disorder Network based in the U.S. that was established just a few years ago and they have provided a good deal of information on DSPD along with folks on their blog forum.

 

I have sent an email to Sick Kids Hospital regarding support/info regarding N and have not heard from them yet.  It seems they are affiliated with the Wake Up Narcolepsy organization that has a connection to Canada. 

 

Do any of you folks meet?  Is there groups that you go to in Canada? (I know, I'm really showing my newbie status here).  A group that meets from time to time in Toronto?  Are there any events regarding raising awareness and learning about N in Canada other than the event at Sick Kids earlier this year?  Do you folks organize a Walk like they do in Washington during National Sleep Week?  Would anyone be interested in do so in Ottawa in 2014 to raise awareness here in Canada regarding N and other such sleep disorders like DSPD?  Any thoughts?

 

Thank you all and I look forward to getting to know everyone.

 

Tracey

Innisfil, Ontario

 

 

 



#6 carrieannburns

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Posted 07 September 2013 - 03:35 PM

I am glad to have helped you with this, (even before actually seeing this post Stevey!)... 

 

 

Dr. Neal Parekh, MD, FRCPC

Neurology & Sleep Medicine

Head, Division of Neurology

Lecturer, Faculty of Medicine, University of Toronto

Phone Number - 416-289-0185

www.tsh.to

Scarborough, Ontario, Canada.

 

 

 

Is the best Neurologist, and Sleep Study Specialist (that's right a two-in-one!), is the best i have come across, for anyone else who is in the same search should definitely contact him. He can be both your sleep study specialist and neurologist, and that is his specialty, he is very informed, and knowledged about Narcolepsy, and its symptoms, treatments, and behaviour... In my opinion he is the best, and i have yet to hear otherwise... I suggest anyone and everyone in the Ontario area, if important enough to see him.  :)   :excl: 







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