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eatmoregreens

PANDAS /PANS doctors in Ontario and test questions

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Hello,

I know there have been a few threads related to this but am hoping for any updated information...

Can anyone recommend a PANDAS / PANS doctor in Ontario, Canada?

Also, if as a first step I go to our GP / ped to discuss PANDAS / PANS, what tests do i ask for?  I know a strep throat culture can be done but what about swabbing other body parts, swabbing for staph, etc, and what blood tests do I ask for?  What do I do if my GP/ped refuses to do the tests?  

Also, can test results still come back postitive even of the main sickness seems resolved / how long will a test come back positive, regardless of symptoms being present?

Thank you in advance!!

 

Edited by eatmoregreens

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Though there are reports of several doctors recognizing PANDAS, there is only one well known, Dr. Wendy Edwards of Chatham.  But, she has a very long wait list, that may even be closed right now.  There seems to be another in Port Dover, but he is not well known by a group of Ontario PANS moms and Dads.

There is supposedly a PANDAS/PANS clinic at SickKids in Toronto, but based on many others' experiences, I would not recommend going there.  The person that seems to run it (Dr. Michelle Shouldice) also has had (and presumably still has) a role in assessing/reporting child abuse.  That personally makes me uncomfortable about her motives, but I may be wrong.  The real reason to not go to Sickkids is because they have not fully embraced the diagnosis, and they are far from being experts at it, if in fact they have even diagnosed anyone with PANS in the last couple of years.  Someone at the hospital did invite Dr. Swedo for a grandrounds, but then the video of it was taken down in less than 48 hours and never put back up.  Together with the sour reports from those that have gone to SickKids, this shows to me that there seems to be an acceptance problem/struggle there.

I am afraid that other medical centers (in Hamilton, and in London) are no better.

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Thank you bobh!  I'll look into Dr. Edwards. It's pretty disheartening that there are so few doctors/resources available.  (When I read through various posts and threads and hear others say they have a PANDAS friendly doctor, I wonder how they found them!)

Thank you for your feedback on SickKids...that is really great feedback.  It really sucks overall, though.....in most cases the first place I prefer to take my kids to is SickKids so to hear that that might actually be a worse option is pretty awful. :(

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Good luck!

We are not supposed to entice people away from this group, so I will just mention that there is an Ontario facebook group which I am would think that you can find if you google (though it isn't a public group).

What I will say about this ACN Latitudes forum, is that the search function works better than facebook's, so one can better mine a rich resource of comments going back very many years (I believe that this group was setup before facebook took off).

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Hi everyone,

I’m also looking for someone to diagnose and treat my child.I contacted Dr.Edwards office last week and the waiting list is 1-11/2 years and she’s not taking anymore .There is Dr.Ayla Wilson in B.C who is a homeopathic Dr.but I was looking for someone closer to home.Its so sad and discouraging that there’s no one to treat this devastating illnes and families are forced to travel to another country for treatment.

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Thanks so much bobh.Can Dr. Wilson order ivig if it’s necessary?I know she can give antibiotics,I watched a lecture she gave on you tube.I have also recently found out that there is a pandas clinic in Saskatoon but haven’t found any contact info yet.We are seeing his pediatrician on Monday,June 25 th and I will try one last time to get her to start treating him or send us to someone who can.It makes me so upset that he was diagnosed with a psychiatric illness so quickly and there was no attempt to find any medical reason for his problems.It’s been 18 months now since this all began and all they want to do is keep increasing the Prozac,it’s just not acceptable.If we were to take our son to another province for treatment would we have to pay out of pocket?

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No, Dr. Wilson can't order IVIG because that has to be done by an MD in the province you reside (she is an ND in BC, where they have prescribing rights).

Yes, Saskatchewan and Alberta seem to be ahead of other provinces.

They will not understand your frustration (but I sure do).  If you need them in the future, you might be careful how you react to their lack of knowledge on this issue.  The real demons are the U.S. doctors that created the "controversy" on PANDAS, acting unethically in some instances, and confusing both general practioners and specialists who then backed away from the disorder.  Your doctors are where they are, and it is very difficult work budging them from their positions and biases.  It could be wasted energy.

You are only covered in your province unless you have the permission to get the province to pay for out of province care (a very rare situation I doubt any of us can get for PANS currently).

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Yes,I’m sure most of us on this forum can understand the frustration and helplessness in trying to find someone to treat this.Both of my sons doctors are extremely nice and seem to want to help but just don’t really know how or enough about it so I can’t really blame them.I’m going to ask her tomorrow if she can get us in to see an infectious disease specialist or if she can recommend anyone in the province that would be willing to treat.I have been in contact with the pandas clinic in Saskatoon but it seems as if you have to be living in the province and your doctor has to refer you to the clinic so that won’t be much help to us.Just wondering if there are any other doctors in Ontario that will treat?

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Only one that I would recommend, Dr. Edwards of Chatham.  You will need your doctor to refer you child to her.  But because she is known as the only one that properly recognizes and treats PANS/PANDAS, she has a very long waiting list - over a year now, I think.  She has started to prescribe IVIG lately, but I think she has only done about 3 so far.

While folks wait for Dr. E, they use Dr. W., the ND in BC - though she is also booking up (probably a month or more wait these days?).  Actually, I think she is on her honeymoon this month.

There are other doctors in Ontario that apparently recognize PANS/PANDAS, but their recognition may be partial (there are so many ways to do that), or their experience lacking.  I would not recommend SickKids, which claims to have a "PANDAS Clinic", but are secretive about who makes up that clinic.  Most of us in Ontario that have gone there, or to McMaster, or to London, have had bad experiences.  As an example, Dr. Swedo did a grand rounds at SickKids in Oct. 2015 (I think), but in less than 48 hours, the video was taken down - indicating some kind of internal politics in the hospital - someone invited her, someone else doesn't recognize PANDAS/PANS.  There may be slow change coming.  I don't expect that you will find any infectious disease specialist in Ontario knowledge enough to be confident in prescribing IVIG, for example.  Dr. E herself was treating without publicizing it a few years ago, for fear of backlash from experts and the existing medical establishment.  She went public with the W5 program a few years back.

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Thanks again for your reply.Had an appt.today with my sons pediatrician and she told me that I’m wasting my time.I should be focusing on treating his symptoms which she meant an increase in his Prozac and clonidine versus searching for the cause of this.I asked her if she would do that if it were her own child and she said yes if her child was suffering from psychiatric issues.But,I told her I don’t believe his symptoms are being caused by a psychiatric problem.She also said that trying another antibiotic is pointless when there is no evidence of an active infection.I spent a full hour trying to explain to her about how fits a clinical diagnosis perfectly, he’s genetically predisposed because of my hypothyroidism and my dads history if rheumatic fever but it didn’t make any difference.I told her we were thinking of taking him to the states.She said to be very careful because these doctors are making a lot of money from people like us and to be sure of what they are offering.I’m not sure what she meant by this.Did she mean that perhaps these doctors are over diagnosing this .Anyway,she did say she would refer him to a neurologist and an infection control specialist but I’m not holding out too much hope.I did call Dr.Edwards clinic last week and her waiting list is closed.

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So sorry about Dr. E's waitlist being closed.

I am afraid that the waste of time was not pursuing PANS, but probably the hour you spent explaining to your pediatrician.  Once their mind is made up, they can't seem to take a fresh look.  But you may still need her, so it is important to not burn bridges.

The market-driven private paying system in the U.S. is very different, and it is possible to be spending a lot on something that might not help much.  But if you stay with the well-known PANS/PANDAS docs that went through the controversial times (as opposed to someone that might look like they are jumping on a bandwagon for commercial gain), you will be fine.

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Thank you so much bobh for replying.You are so knowledgeable and I’m sure you have helped so many of us on this forum.How is your child doing?Yes,I certainly don’t want to burn bridges with the pediatrician but it’s just so disappointing when all the signs are so obvious that it’s pans but they’re only willing to increase the Prozac to help him.How does it work with the phone consult with Dr. Wilson.Do you tell her all your child’s symptoms and she’ll tell you whether or not she feels it’s pandas/pans?I’m assuming she can’t provide any treatment such as antibiotics if it’s just a phone consult or can she?Would you know the cost of a consult with her?I did watch a lecture on you tube that she gave,I think it was in Ontario and she seemed like a lovely lady and the lecture was very informative.Sometimes I just feel like maybe I should forget about all this research I’m doing and just go along with what his Dr.s are saying and just treat the symptoms.I know they don’t really know the long term effects of pans on children if it’s left untreated but I’m scared to take the chance.A lifetime of psyc meds is not what I want for my child.I often wonder if there are many children seeing these Dr.s in the states that they diagnose as not having it.I’ve also read too that they do give a lot of ivig treatments so it is a little scary to think about possibly having to go there and then perhaps the expensive treatment not working.I was so hoping that there were other physicians in Ontario that were diagnosing and treating this.

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Sorry to butt into Eatmoregreens and Newfie's thread, but @bobh what do you mean by "dcotors in London"?  Anybody I ought to know about?  Always on the lookout for more UK doctors to add to my mental list.

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