Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hi Jodie, Where in Canada are you? My son and I both have BPES and we are in the Toronto area. We see a Dr. Pashby. jodiefilewych <jodiefilewych@...> wrote: Wondering if anyone has any advice on surgeons in Canada - our son has been diagnosed with congenital BPES.appreciate any feedback!!Jodie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hi there... We live in Edmonton, and we take our daughter to see Dr Royce . I know of at least 2 other families that are currently seeing him as well. If you are anywhere near Alberta (or even if not), I would highly recommend him. I know there are families that travel a LONG way to see him. There is also a genetics clinic hear that deals specifically with genetic eye disorders. Dr. Mac at the genetics clinic has been fabulous at sorting out all of the confusion we had surrounding this syndrom. I feel truly blessed to be living where we have access to these wonderful Doctors. Hope this helps, Trish blepharophimosis BPES in Canada Wondering if anyone has any advice on surgeons in Canada - our son has been diagnosed with congenital BPES. appreciate any feedback!! Jodie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hi Trish, Thanks for the info - we live in Calgary. What if any surgery has Dr done on your daughter? We have actually had our son Ethan to see Dr who advised us that our son required surgery asap however Dr Ashenhurst in Calgary disagreed with Dr J and advised surgery at the age of 4/5. We feel we don't have alot of info to make the correct decision and have been searching for other families to hear what they are doing. Would appreciate any info you could provide. thanks and take care, JodieTrish <tganam@...> wrote: Hi there...We live in Edmonton, and we take our daughter to see Dr Royce .I know of at least 2 other families that are currently seeing him aswell. If you are anywhere near Alberta (or even if not), I would highlyrecommend him. I know there are families that travel a LONG way to seehim. There is also a genetics clinic hear that deals specifically withgenetic eye disorders. Dr. Mac at the genetics clinic has beenfabulous at sorting out all of the confusion we had surrounding thissyndrom. I feel truly blessed to be living where we have access tothese wonderful Doctors.Hope this helps,Trish-----Original Message-----From: jodiefilewych [mailto:jodiefilewych@...] Sent: Monday, February 21, 2005 12:35 AMblepharophimosis Subject: blepharophimosis BPES in CanadaWondering if anyone has any advice on surgeons in Canada - our son has been diagnosed with congenital BPES.appreciate any feedback!!Jodie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hi , We live in Calgary and have seen 3 doctors - one in Calgary who suggests we wait until Ethan our son is 4 or 5 - 2nd doctor in Edmonton Dr who told us our son needs surgery asap - 3rd doctor in New York who indicated that Ethan could likely get improved function by doing surgery on the levator muscle. What surgeries have you/your son had? We have been advised that Ethan needs a frontalis sling in Canada and in the US we have been advised surgery on the levator muscle would improve function. We are confused as to what we should do. Appreciate your info!! Thanks and take care, JodieKati Graw <katigraw@...> wrote: Hi Jodie, Where in Canada are you? My son and I both have BPES and we are in the Toronto area. We see a Dr. Pashby. jodiefilewych <jodiefilewych@...> wrote: Wondering if anyone has any advice on surgeons in Canada - our son has been diagnosed with congenital BPES.appreciate any feedback!!Jodie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Hi, WOW, I can not believe another family in Alberta! How old is your little one? When was Ethan diagnosed? Dr. did a brow lift when Caylie was a year old. It was necessary because she was not getting enough light into her eyes at the time to maintain vision. The rest of the surgeries (cosmetic) he wants to wait on until Caylie is 4/5. Dr J has been seeing Caylie since she was 6 weeks old, and he is NOT one to jump the gun on surgery. We also see Dr Drummond, he is a pediatric ophthalmologist at the Stollery Children's hospital here in Edmonton every 6 months. He has agreed with all of Dr. 's recommendations, as has her pediatrician who is also one of the Stollery Dr's. Dr J has seen many other children with BPES, and we obviously trust him implicitly, but if you are nervous, my suggestion would be to get as many opinions as you can. The first pediatrician we had for Caylie (for her 1st 6 weeks of life) was not even concerned about getting us in to see a specialist right away. When he tried to make the referral to Dr. J initially, he was satisfied with the 3 month wait period to get in. We later learned from the other pediatric ophthalmologist that had Caylie's eyes been too tight and needed surgery right away that 3 months may have made a difference in her ability to see forever. When we got in touch with the right Dr's that week and Dr.J heard about our case, we were in to see him the SAME DAY. He did not feel she needed surgery right away, and assessed her every 2 months until one day he said that was it...no more waiting. Some Dr's just don't seem to know enough about the condition. Please do not get me wrong, I am not saying the same as your Dr, I don't know his background. My husband and I shopped around for Dr's. We were willing to go ANYWHERE. We thought the best ones would be in the bigger centers....Vancouver, Toronto, New York, L.A., we were so surprised when Dr after Dr told us Dr. J was not any less skilled that anyone else we would find in North America. I'm sorry if I sound like an advertisement for Dr. J, but I really trust him, and I know what other families have gone through in their roads to getting him. As a matter of fact, one of the families from Manitoba is coming in a couple of weeks for a surgery with him. I do not know if this helps you or not, if there are any other questions I can answer for you, please do not hesitate to ask. Trish -----Original Message-----From: jodie filewych [mailto:jodiefilewych@...] Sent: Monday, February 21, 2005 4:30 PMblepharophimosis Subject: RE: blepharophimosis BPES in Canada Hi Trish, Thanks for the info - we live in Calgary. What if any surgery has Dr done on your daughter? We have actually had our son Ethan to see Dr who advised us that our son required surgery asap however Dr Ashenhurst in Calgary disagreed with Dr J and advised surgery at the age of 4/5. We feel we don't have alot of info to make the correct decision and have been searching for other families to hear what they are doing. Would appreciate any info you could provide. thanks and take care, JodieTrish <tganam@...> wrote: Hi there...We live in Edmonton, and we take our daughter to see Dr Royce .I know of at least 2 other families that are currently seeing him aswell. If you are anywhere near Alberta (or even if not), I would highlyrecommend him. I know there are families that travel a LONG way to seehim. There is also a genetics clinic hear that deals specifically withgenetic eye disorders. Dr. Mac at the genetics clinic has beenfabulous at sorting out all of the confusion we had surrounding thissyndrom. I feel truly blessed to be living where we have access tothese wonderful Doctors.Hope this helps,Trish-----Original Message-----From: jodiefilewych [mailto:jodiefilewych@...] Sent: Monday, February 21, 2005 12:35 AMblepharophimosis Subject: blepharophimosis BPES in CanadaWondering if anyone has any advice on surgeons in Canada - our son has been diagnosed with congenital BPES.appreciate any feedback!!Jodie Quote Link to comment Share on other sites More sharing options...
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