cobygurl Posted July 6, 2013 Report Share Posted July 6, 2013 Hi, I was curious if there were any Candians on the forum? I am in Nova Scotia and so far have needed to travel to the States for much of everything. In fact, trying to follow up on titres for DS to see if they've moved and they won't do the test here (i orginally had the blood drawn in NJ eith Dr. T.). Just curious if any of you have found any paediatricians or doctors who are versed in Pandas/Pans here in Canada and willing to help. Thank you cobygurl 1 Link to comment Share on other sites More sharing options...
rowingmom Posted July 6, 2013 Report Share Posted July 6, 2013 (edited) Sorry, but I don't think there is much in the way of help. One of the Moms (momcap) who used to post here when we started out had a helpful PCP. She was so lucky to find someone who understood. Her son was responding well with treatment, but her PCP was eventually unable to continue. I'm not sure how her son is doing, but I don't think he was able to get the treatment he needed. Four doctors I spoke to in the Niagara area (PCP, ped psych, pediatrician, walk-in clinic dr) all said they couldn't requisition tests or prescribe meds for conditions they were not treating for. They were unable to treat DD because she required long term abx and Ontario doctors are constrained by the College of Physicians and Surgeons from doing so (not to mention they all laughed me out of the office when I showed up with DD's Igenex results, even with positive bartonella). The last couple of lyme treating doctors here were forced to stop practicing in June 2010 or 2011. Although our ped psychologist suggested PANDAS might be DD's problem (she was flaring with strep) the dr refused to run titers (she said they would be high from the previous infection) and that IVIG is only allowed if there is complete incapacitation. I didn't feel like waiting until that happened. You are one of the lucky ones if: 1) you are close enough to travel and 2) can afford the out-of-pocket payments. We took out a new mortgage on the house. Purchase everything with a dividend card. Your benefits may pay for some abx dispensed in Canada. CanadaDrugs dispenses Canadian sourced abx with valid US prescriptions. We were at least able to get that back, but actually the abx were not half as expensive as testing, dr visits, and supplements. While DD was on multilple abx we ran CBC, CMP, ALT, AST monthly. Canadian doctors don't even know what these tests comprise, especially the multiple tests run for the CBC and CMP. They certainly don't know about lyme/coinfection tests. There are more LLNDs starting to pop up, but they can't treat with abx either. Don't you just love our FREE Health Care System? Edited July 7, 2013 by rowingmom Link to comment Share on other sites More sharing options...
lfran Posted July 6, 2013 Report Share Posted July 6, 2013 Wow-- how can an MD not know about a CBC and CMP??!!! Link to comment Share on other sites More sharing options...
rowingmom Posted July 7, 2013 Report Share Posted July 7, 2013 They don't use the same acronyms and codes in Canada, and when I showed one doctor the list of different tests, I was told Canada doesn't have any equivalent. I guess they order each one separately. The doctor certainly wasn't going to take the time to figure it all out for me. Link to comment Share on other sites More sharing options...
momcap Posted July 7, 2013 Report Share Posted July 7, 2013 One of the Moms (momcap) who used to post here when we started out had a helpful PCP. She was so lucky to find someone who understood. Her son was responding well with treatment, but her PCP was eventually unable to continue. I'm not sure how her son is doing, but I don't think he was able to get the treatment he needed. I'm still here! I only peek in once a week or so now. We're not in a good place and I don't have much to say most days now. I don't think you will find any docs to help in Canada. If you do, please please please share! We tried all the major medical centres around us - MacMaster, London, Sick Kids. No luck. We ran Cunningham's (positive) and then worked briefly with Dr. T, starting Augmentin and then Biaxin. Things went from bad to worse and it was practically impossible to get a response from Dr. T, so we moved on to look at lyme. My entire family tests positive for lyme (IgeneX). And I test CDC positive. My PANDAS DS had so many strange lyme symptoms that could not be explained by PANDAS. So we went to an LLMD/ND in the U.S. Ya, our GP was supportive and helpful, in that he supported us going to the U.S. for treatment, and tried to keep an open mind about what we were doing. He even re-wrote some of our U.S. scripts so we could fill them at our regular pharmacy. He ran bloodwork every month. We did 12 months of multiple long-term high-dose antibiotics along with a supplement program to treat chronic strep infection, lyme disease, and suspected bartonella. Results were nothing short of miraculous, but could never be sustained. 24 hours off antibiotics and DS would go berserk. After 12 months our GP would no longer support our journey. His attitude was - well you tried and you can't keep doing this forever, it's time to stop. He knew DS was non-functional off antibiotics, but he still refused to support us any longer. He sent us to a pediatrician who is following PANDAS in Canada with great interest, but unfortunately she is unwilling to actually DO anything until there is an established protocol. She referred us to a pdoc at Sick Kids who is supposedly PANDAS-friendly, whatever that means. We're still waiting for that appointment. Meanwhile, DS went back to a non-functioning mess. He's currently in a short term psych residential stay, trying to sort out what on earth we can do to help him. He's paralyzed by OCD, anxiety, mood disorder, and sensory processing disorder. He can't change clothes, brush teeth, go to school, or even behave in a civil manner anymore. He is not even the same kid he was 12 months ago. But he's exactly the same kid he was before lyme treatment. You should be able to get an ASO-t in Canada. Our docs run one every time DS needs bloodwork. He's down in the 200s now (was in the 500s), 4 years post-Scarlet fever. There is a Canadian PANDAS FB page, with some people from the East. They might have an idea of docs out your way. I don't know how you can get on the group though, because they moved it to "secret". If you are interested I will try to find out. Link to comment Share on other sites More sharing options...
rowingmom Posted July 7, 2013 Report Share Posted July 7, 2013 Sorry to hijack the thread but.... @ momcap - I'm PMing you. Link to comment Share on other sites More sharing options...
rowingmom Posted July 7, 2013 Report Share Posted July 7, 2013 That didn't work, momcap, can I PM you? Link to comment Share on other sites More sharing options...
cobygurl Posted July 7, 2013 Author Report Share Posted July 7, 2013 (edited) Thank you so much for replying! Yes, I would love to know about the secret Canadian group here on FB. I am working with a naturopath here in NS who is very supportive of what we are dealing with and a GP who at this point is willing to rewrite the script for blood draws ( I do suspect though that it may be starting to get to her as she always asks why the doctor in the US asks for these!) One of my biggest problems is they wont run the tests for Coxsackie, AntibNase and a few others that I desperately need - apparently they just aren't done here unless someone high up okays this from infectious diseases or something. We are also seeing an environmental physician in TO (we flew there once) and have done phone consults for the rest of our appts. He ran several tests, doesn't know that much about pandas/pans but has been helping with DS nutritional deficiencies. It's been a slow road and the only time we have seen some relief and confirmed a pans diagnosis (at least to us) is that he gets markedly better when you give him ibuprofen. He has just finished a MAJOR FLARE tht lasted this while week. He has been given shelves of supplements, some have worked (Zinc, Vit C...) others not, but I still don't think we have found everything, I suspect he has more than one infection... We are currently working with Dr. T. but have a hard time being the go between with all these doctors and piecing it together. We have also consulted with Dr. Wojcik an allergist in NYC who we first heard of in Sheila Rodgers book "natural Treatment for Tics and Tourettes" when all we could think was that thi was TS. Dr. Wojcik is wondeful and caring but we ate not currently doing immunotherapy. I am now thinking that my best option would be to drive the 8 hours to Maine to get blood drawn. Do you know if they would except a blood requisition from our of State doctors? By the way if either of you would be interested in the EP name, I believe you might both be near TO please let me know. He had been helpful in identifying nutritional deficiencies and although we haven't been able to address al his findings, it's good information to have. Thank you so much for the insight! Edited July 7, 2013 by cobygurl Link to comment Share on other sites More sharing options...
momcap Posted July 7, 2013 Report Share Posted July 7, 2013 That didn't work, momcap, can I PM you? Weird. I haven't used the PM since the changes on the forum, but I used it quite a bit before. Do I have to do something or set something to allow you to PM me? IDK? Link to comment Share on other sites More sharing options...
momcap Posted July 7, 2013 Report Share Posted July 7, 2013 Thank you so much for replying! Yes, I would love to know about the secret Canadian group here on FB. By the way if either of you would be interested in the EP name, I believe you might both be near TO please let me know. He had been helpful in identifying nutritional deficiencies and although we haven't been able to address al his findings, it's good information to have. I think I can invite you to the FB group, but it would have to be approved by the admins. I would need your facebook contact to do this. I was going to say PM me if you want me to try this, but it sounds like PM might not be working. If we can get through on PM I would love to know the name of the EP in Toronto. Link to comment Share on other sites More sharing options...
lfran Posted July 7, 2013 Report Share Posted July 7, 2013 I'm also trying to PM you. You may have to go in and delete some old messages. That's what I had to do. Link to comment Share on other sites More sharing options...
rowingmom Posted July 7, 2013 Report Share Posted July 7, 2013 That didn't work, momcap, can I PM you? Weird. I haven't used the PM since the changes on the forum, but I used it quite a bit before. Do I have to do something or set something to allow you to PM me? IDK? I got a red! message saying you were not accepting PMs. If you have time, maybe try to PM me to see if yours is functioning. Link to comment Share on other sites More sharing options...
cobygurl Posted July 7, 2013 Author Report Share Posted July 7, 2013 Hi Momcap, I tried PMing you as well but it said you couldn't accept messages. Could you please PM me as well. Thank you! Link to comment Share on other sites More sharing options...
rowingmom Posted July 7, 2013 Report Share Posted July 7, 2013 @momcap. Perhaps your mailbox is full. When the change was made to the new forum we lost a lot of storage space. Link to comment Share on other sites More sharing options...
momcap Posted July 7, 2013 Report Share Posted July 7, 2013 Okay, I deleted a bunch of old stuff. I think my PM should work now! Link to comment Share on other sites More sharing options...
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