lisamac Posted April 11, 2011 Report Share Posted April 11, 2011 Hello, I was wondering if anyone knows of a good doctor in Canada for a child who is 12. I believe my son my have POTS and NCS. My son starting having abnormal breath holding spells at 7 months old and when he was 2 1/2 he received a pacemaker for the spells as his heart was pausing from 7 to 15 seconds with each spell. He was having up to 10 spells a day, for those 2 years. Not only did he have the breath holding spells, he had episodes of vision loss , central apnea ,stomach issues , heart rate going for 80 beats to 170 beats when he went from sitting to standing and low blood pressure. He complained of gallops in his heart, dizziness and chest pains. He also had learning difficulties and delays. He also has issues taking meds and be under anaesthesia. As he has gotten older he now complains of shortness of breath, tingling in his legs, dizziness, exercise intolerance, his body doesn’t regulate to heat very well especially when playing sports on a warm day. I have not checked his heart rate in the last couple of years as the cardio doctors said he was fine and it would cause any problems. I don’t really believe him, but I stopped checking it because it scared me. I kind have had my head buried in the sand the last few years as I knew he had is pacemaker and a least his heart would be okay and I he never really complained much about is symptoms as he has had them since he was a baby. Last week we went for a pacemaker check up and we were told the pacemaker battery is dead and that they where finish with seeing him, we are more then welcome to come back if the spells returned. My husband and I are scared to think what may happen now if he ever gets hurts, as we have seen our son start to have a spell and the pacemaker kick in. I am angry that the doctors made this decision with out even knowing how many spells he had through the last 2 year. I am also concerned that he will be hitting puberty soon and who know what changes his body will go through. We can only hope that maybe he will out grow this medical problem, but if he doesn’t we need to find a doctor who will understand what he is going through. I am so sorry for rambling on. Lisa Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 11, 2011 Report Share Posted April 11, 2011 I'm sorry to hear about the trouble your son has been having. Where are you in Canada? Quote Link to comment Share on other sites More sharing options...
lisamac Posted April 11, 2011 Author Report Share Posted April 11, 2011 We are in BC, but I am willing to go anywhere in Canada to see a doctor. I would go to the States but it is very hard to get the medication they use and for our peds doctor to work with them. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 12, 2011 Report Share Posted April 12, 2011 I don't know of any personally, but an internet search came up with a Doctor that sounds good. He has written many articles on the subject and sees children. It's a bit far for you though? Good luck. http://www.ncbi.nlm.nih.gov/pubmed/15860686http://www.ratemds.com/doctor-ratings/953705/Dr-Ronnie-Schondorf-Montreal-QC.htmlAnd this is a list from the Dinet site:CANADA Dr. Jean CussonUnite D'investigation Non-InvasiveHospital Charles LeMoyne3120 boul. TaschereauGreenfield Park, Que. J4V 2H1450-466-5000 x3106POTS (Syndrome de tachycardie Posturale), NCS (Syncope Neurocardiogenique), PAF (Bradbury Eggleston)/Secondary Autonomic Failure, MSA (Shy Drager), Subacute PandysautonomiaAutonomic LaboratoryTreats adults Dr. Ronald SchondorfNeurologySMBD Jewish General Hospital3755 chemin de la Cote Ste CatherineMontreal, QC H3T 1E2514-340-8222 ext.2399Will treat children Dr. Maxime Lamarre ClicheInstitut de Recherches Cliniques de Montreal110, Avenue des Pins QuestMontreal (Quebec) Canada H2W 1R7514-987-5600Autonomic LaboratoryPOTS, NCS, PAF/Secondary Autonomic Failure, MSAWill treat children 13 years and older Carlos A. Morillo, MD, FRCPC, FACC & Juan C. Guzman, MDAutonomic Disorders Laboratory - Syncope UnitArrhythmia Service, Cardiology Division -Department of Medicine, Faculty of Health Sciences, McMaster UniversityHealth Sciences Centre - Room 3E25-D1200 Main St. W. Hamilton, Ontario, Canada, L8N3Z5905-521-2100 Ext: 75616Autonomic LaboratoryWill treat children 13 years and older Quote Link to comment Share on other sites More sharing options...
lisamac Posted April 12, 2011 Author Report Share Posted April 12, 2011 Thank you Naomi for the information Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 12, 2011 Report Share Posted April 12, 2011 I saw Dr. Carlos Morillo in Hamilton, and it was his autonomic lab that diagnosed me. He seems like a nice man, but I have mainly been treated by his students so far. I don't know if he sees children at 12, but it might be worth calling his office to see if they can recommend anyone. At least they know what you mean when you talk about autonomic issues. His secretary seems a little disorganized though. Another idea would be to call the Hospital for Sick Children in Toronto to see if anyone there could recommend somewhere to go in BC? It's an awfully long trip for you if you have to come all the way to Ontario.I really hope you get some answers soon. Quote Link to comment Share on other sites More sharing options...
summer Posted April 17, 2011 Report Share Posted April 17, 2011 Hi, Lisa. I have not been posting much lately because I am feeling quite a bit better these days. I just dropped in to see how everyone was doing and I saw your post. I saw Dr. Schondorf in Montreal a few years ago. I traveled from the other coast of Canada, and I can tell you the the trip was worth it. He did autonomic testing, including the tilt table test, and after over a year of trying to find a doctor who A/ believed me, and B/ could help me, Dr. Schondorf finally did both. He diagnosed my automonmic disorder (POTS) right away and within two weeks of seeing him, had sent an excellent report with very specific recommendations to my doctor in my home province (Drs can only write perscrîptions in their own province). I had a lot of improvement after following his recommendations, and returned for a follow up visit later, where he fine tuned my treatment, and made some new recommendations. With his help, I have improved so much that I am hoping to return to work soon after being unable to work for over 4 years. Because we had travelled so far, he spent a lot of time with me explaining my condition and answering my questions. I have a 12 year old daughter as well who is showing some signs of OI, and the second time I was there he was very willing to answer some questions I had about her, and give me some recommendations for her. I will take her to see him in a heart beat if I ever feel her condition needs to be assessed. I certainly will not waste my time with specialists here, who have no knowledge about dysautonomia.Good luck in finding a doctor to help your son. I would certainly recommend Dr. Schondorf. He has helped me so much, and I was beginning to think that no one could.Summer Quote Link to comment Share on other sites More sharing options...
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