Denata Posted November 19, 2009 Report Share Posted November 19, 2009 Hello I really need to find a hospital in Canada where they will perform IVIG on patients who have PANDAS. The PANDAS diagnosis seems fairly new in Canada therefore most hospitals don't seem to be offering IVIG for PANDAS patients yet. Does anyone know where I can go so I can help my son who has been suffering for 7 years now. I'm not waiting anymore, he is losing his childhood. Thank you, Denata Link to comment Share on other sites More sharing options...
bubbasmom Posted November 19, 2009 Report Share Posted November 19, 2009 I live in St. Louis Missouri, you may not be familiar, we're no metropolis but it is a big city. We have 15 major hospitals just within the actual city limits and that's not even counting the surrounding counties. Yet I had NO ONE to treat my son. I ended up going to Chicago, then Dr. K in Chicago 'walked' our regular pediatrician through it. My regular pediatrician found a HEMOTOLOGIST to do it. This guy does IVIG for other diseases. It was actually at a cancer treatment center where we had it done. So if your pediatrician is on board, see if he can talk someone he knows into it. Pediatric cancer doctors are very compassionate. Dr. K in Chicago does phone consultations, then he could walk your regular doctor through it. Hello I really need to find a hospital in Canada where they will perform IVIG on patients who have PANDAS. The PANDAS diagnosis seems fairly new in Canada therefore most hospitals don't seem to be offering IVIG for PANDAS patients yet. Does anyone know where I can go so I can help my son who has been suffering for 7 years now. I'm not waiting anymore, he is losing his childhood. Thank you, Denata Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted November 19, 2009 Report Share Posted November 19, 2009 I just want to ditto what bubbasmom had to say.... We also found a pediatric oncologist/hematologist to treat us based on Dr. K's recommendations. They usually either have their own in office IVIG rooms or easy access to IVIG since they often administer IVIG for their pediatric cancer patients. Dr. K was amazing in terms of corresponding with the doctor in terms of dosage level and antibiotics. We did do the phone consult with Dr. K prior to finding a local doctor. I then got on the phone and called nearby immunologists and neurologists and hematologists/oncologists to find someone willing to work with us. Good Luck and keep us updated on how you are doing. Elizabeth Link to comment Share on other sites More sharing options...
Denata Posted November 19, 2009 Author Report Share Posted November 19, 2009 Thank you both (Bubbasmom and Elizabeth)! I have been in contact with Dr. K. He seems to be the Dr. to help us all my only problem is that I can't get the Doctors here to work with him. They are so cowardly. They are waiting for the US to do all the procedures. We are about to cash in our RRSP's to pay for it to be done in Chicago because we just can't wait anymore. I have an appointment with a Neurologist on Monday, I'll let you know how it goes. I have a whole bunch of supporting evidence that I will be bringing with me but I already know that his opinion is that IVIG isn't the answer. I plan to fight for my son on Monday and I'm not leaving the appointment until I feel that I've done everything possible to try to get it done in Canada. Wish me luck! Denata Link to comment Share on other sites More sharing options...
PKM Posted November 19, 2009 Report Share Posted November 19, 2009 I too am a fellow Canadian (Winnipeg). I'm always looking for fellow Canadians on here because our experience with our health care system is so different than in the US. I'm just wondering where abouts you live and if someone has actually given you a formal PANDAS diagnosis here?? Also did you ever do the Cunningham tests and if yes did you have the blood drawn by someone in Canada or did you cross the border to do it?? Hello I really need to find a hospital in Canada where they will perform IVIG on patients who have PANDAS. The PANDAS diagnosis seems fairly new in Canada therefore most hospitals don't seem to be offering IVIG for PANDAS patients yet. Does anyone know where I can go so I can help my son who has been suffering for 7 years now. I'm not waiting anymore, he is losing his childhood. Thank you, Denata Link to comment Share on other sites More sharing options...
EAMom Posted November 19, 2009 Report Share Posted November 19, 2009 Hi, I got this off of Beth Maloney's FB list of docs: CANADA Dr. Rob Nicolson, Chair & DDD UGE Director rnicolso@uwo.ca Phone: 519-685-8427 Address: Children's Hospital of Western Ontario, Dept. of Psychiatry, Professional Block, Room 201, 800 Commissioner's Road East, London, Ontario N6C 2V5 Link to comment Share on other sites More sharing options...
PKM Posted November 19, 2009 Report Share Posted November 19, 2009 Thanks so much. I really appreciate it and it is hopeful to see at least one doctor listed there!! When I reach the "brick wall" in Winnipeg (which I no doubt will at some point!) I will contact him for sure. Thanks again! Hi,I got this off of Beth Maloney's FB list of docs: CANADA Dr. Rob Nicolson, Chair & DDD UGE Director rnicolso@uwo.ca Phone: 519-685-8427 Address: Children's Hospital of Western Ontario, Dept. of Psychiatry, Professional Block, Room 201, 800 Commissioner's Road East, London, Ontario N6C 2V5 Link to comment Share on other sites More sharing options...
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