Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Margaret, There are many families here who have similar stories to yours. A few, in fact, have had some issues (a few years ago) with Sick Kids in Toronto. I'm not sure if that's the hospital you were at, but take comfort in the fact that others have dealt with similar attitude issues in every part of the world! One thing that I learned from my clubfoot ordeal is that I will never blindly trust a doctor ever again for any unusual medical condition beyond the common cold etc. I will always research, research, research! Here is the address for a Ponseti-approved doctor in London (who has been on Dr. P's list for a number of years): P. Carey, M.D. London Health Sciences Centre Campus-W London ON N6K 4BC Canada Tel: Fax: If you go to Dr. P's website: http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html You can email Dr. Carey directly also. Have you heard of/met with Dr. Carey at all? There is another fantastic doctor in Kingston, Dr. son, who actually is a member of this board and in the past has given our group lots of great input and helped us to understand many things from a doctors' perspective. The foot abduction brace is often set up incorrectly by the orthotists, even if the doctor writes the prescription correctly. It is best if the doctor has orthotists that they work very closely with. Anyway, there are instructions that you can download and lots of pictures to reference so that you can get 's brace set up correctly. Feel free to continue to ask questions and vent- we're here for you! And keep us posted on your grandbaby's arrival too! (Congrats!) Regards, & (3-16-00) left clubfoot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Margaret, congratulations on your baby! Phooey on those who think you're too old. My 2nd turned 1 a few days before I turned 39 - who cares? I think we make better mothers in these years, we're more laid back. haha You've gotten quite the run around haven't ya. Are you with a Poneti doctor now? Like others have said, you are your baby's advocate so don't settle (or be bullied) in to accepting less than perfect care for him! s. so happy I'm crying I should have found a support group MONTHS ago! Thank you so very much for responding and affirming us. was a very unexpected and welcome retirement project-born just before my 49th birthday! Our first grandchild is due in 3 weeks! and while we are completely thrilled to be experiencing all the joys of baby FIRSTHAND, all over again, I find that I am a little defensive of my mothering and almost feel like I have to justify my " right " to fuss as we have had some cavalier attitudes and negative response. As if maternal age has anything to do with coping with orthopedic deformity!!! I am a retired nurse but no experience with clubfoot. was born in a 22 bed hospital up north, transferred at day 2 to a regional centre for casting ( " non-surgical " ) He went alternate weeks for manipulation and cast changes. He squirmed out of at least 4 casts and then would be 1 week or more until next app't as they wouldn't see him in the meantime. At 4 months he was referred to nearest children's hospital (3 1/2 hours away) for splints and possible tenotomy. We waited, out of casts for 5 weeks with no response from Children's hospital. (I phoned twice a week to check on app't) Fortunately, a vacationing orthopedic surgeon from near Toronto met us up north and wanted that baby back in casts pronto, so arranged for us to see him the next week at his clinic. Baby had a casting with him - first time the foot was externally rotated and he did look strange! then this surgeon got us into Childrens Hospital closer to home within 2 weeks. They saw and decided he was ready for tenotomy even though the Ponseti surgeon thought he needed 2 or 3 more castings to recover the correction, and did him the next day! (general anesthesia) Baby was to have that cast off 2 weeks later and go into splints. However the surgeon here said he'd only wear splint at night since he was " so big " . When I protested that I had been instructed STRICTLY by Ponseti doctor that compliance was essential, 23 hours/day for first 3 months, they chuckled and seemed to think I was making a big deal out of nothing. During our 3 hour wait for our 9:30 app't there was a family with a 3 year old who needs repeat surgery and she was bitter about the casual attitude here at children's hosp. So we went back to Toronto doctor to have cast off at 3 weeks and he ordered splint. (I am sure he told me it would be 1 inch wider than hips.) Anyhow, we decided to get orthotics locally (mistake)and phoned the hospital here to know where to go. It was 2 weeks before we could be seen and then 2 weeks before they could get the shoes/splint. I can't understand this since if we had gone ahead and done this in Toronto it would have all been done the very next day! I really appreciate the encouragement that it is important for me as 's mom to push for correct treatment. The Doctor wrote a prescription for the shoes/bar so you would think they could do it correctly? $180.00 later, I am very unhappy that I accepted the shoes as I knew when I saw them that it wasn't as the Dr described. The baby and I have moved back down here (London) with his older siblings as there are some in the University here and his daddy commutes 4 hours each way every w/e. We thought we should be where he could get consistant care, and I wanted to be closer to my other kids. I can see that we will still be on the road as the only doctor we have confidence in is 2 1/2 hours away in Toronto! Thank you so much for responding (and reading this loooong response) Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Margaret - You are only as old as you feel. My father turns 54 at the end of December, he and his wife just welcomed their 3rd child together. He has a 6 year old granddaughter and my 2 year old son. My second son was born after my baby sister.. It just enriches you and I agree......PHOOEY on those who have adverse opinions. I am sure that they would look at me and wonder....humph I wonder what she did to cause this in her child. I just look and laugh! Dawn CHristopher 9/14/02 7/20/04, bcf dbb23/24 Number23 number23@...> wrote: Margaret, congratulations on your baby! Phooey on those who think you're too old. My 2nd turned 1 a few days before I turned 39 - who cares? I think we make better mothers in these years, we're more laid back. haha You've gotten quite the run around haven't ya. Are you with a Poneti doctor now? Like others have said, you are your baby's advocate so don't settle (or be bullied) in to accepting less than perfect care for him! s. so happy I'm crying I should have found a support group MONTHS ago! Thank you so very much for responding and affirming us. was a very unexpected and welcome retirement project-born just before my 49th birthday! Our first grandchild is due in 3 weeks! and while we are completely thrilled to be experiencing all the joys of baby FIRSTHAND, all over again, I find that I am a little defensive of my mothering and almost feel like I have to justify my " right " to fuss as we have had some cavalier attitudes and negative response. As if maternal age has anything to do with coping with orthopedic deformity!!! I am a retired nurse but no experience with clubfoot. was born in a 22 bed hospital up north, transferred at day 2 to a regional centre for casting ( " non-surgical " ) He went alternate weeks for manipulation and cast changes. He squirmed out of at least 4 casts and then would be 1 week or more until next app't as they wouldn't see him in the meantime. At 4 months he was referred to nearest children's hospital (3 1/2 hours away) for splints and possible tenotomy. We waited, out of casts for 5 weeks with no response from Children's hospital. (I phoned twice a week to check on app't) Fortunately, a vacationing orthopedic surgeon from near Toronto met us up north and wanted that baby back in casts pronto, so arranged for us to see him the next week at his clinic. Baby had a casting with him - first time the foot was externally rotated and he did look strange! then this surgeon got us into Childrens Hospital closer to home within 2 weeks. They saw and decided he was ready for tenotomy even though the Ponseti surgeon thought he needed 2 or 3 more castings to recover the correction, and did him the next day! (general anesthesia) Baby was to have that cast off 2 weeks later and go into splints. However the surgeon here said he'd only wear splint at night since he was " so big " . When I protested that I had been instructed STRICTLY by Ponseti doctor that compliance was essential, 23 hours/day for first 3 months, they chuckled and seemed to think I was making a big deal out of nothing. During our 3 hour wait for our 9:30 app't there was a family with a 3 year old who needs repeat surgery and she was bitter about the casual attitude here at children's hosp. So we went back to Toronto doctor to have cast off at 3 weeks and he ordered splint. (I am sure he told me it would be 1 inch wider than hips.) Anyhow, we decided to get orthotics locally (mistake)and phoned the hospital here to know where to go. It was 2 weeks before we could be seen and then 2 weeks before they could get the shoes/splint. I can't understand this since if we had gone ahead and done this in Toronto it would have all been done the very next day! I really appreciate the encouragement that it is important for me as 's mom to push for correct treatment. The Doctor wrote a prescription for the shoes/bar so you would think they could do it correctly? $180.00 later, I am very unhappy that I accepted the shoes as I knew when I saw them that it wasn't as the Dr described. The baby and I have moved back down here (London) with his older siblings as there are some in the University here and his daddy commutes 4 hours each way every w/e. We thought we should be where he could get consistant care, and I wanted to be closer to my other kids. I can see that we will still be on the road as the only doctor we have confidence in is 2 1/2 hours away in Toronto! Thank you so much for responding (and reading this loooong response) Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Congratulations!! Don't let anyone rain on your parade. Enjoy your Baby Moon time. Life is wonderful and amazing! A baby moon is what many cultures call the first couple of week with your baby. It like the honeymoon phase of a marriage. LaRena Dillon R CF, AP mom, EC, homebirther. margaretdoner margaretdoner@...> wrote: I should have found a support group MONTHS ago! Thank you so very much for responding and affirming us. was a very unexpected and welcome retirement project-born just before my 49th birthday! Our first grandchild is due in 3 weeks! and while we are completely thrilled to be experiencing all the joys of baby FIRSTHAND, all over again, I find that I am a little defensive of my mothering and almost feel like I have to justify my " right " to fuss as we have had some cavalier attitudes and negative response. As if maternal age has anything to do with coping with orthopedic deformity!!! I am a retired nurse but no experience with clubfoot. was born in a 22 bed hospital up north, transferred at day 2 to a regional centre for casting ( " non-surgical " ) He went alternate weeks for manipulation and cast changes. He squirmed out of at least 4 casts and then would be 1 week or more until next app't as they wouldn't see him in the meantime. At 4 months he was referred to nearest children's hospital (3 1/2 hours away) for splints and possible tenotomy. We waited, out of casts for 5 weeks with no response from Children's hospital. (I phoned twice a week to check on app't) Fortunately, a vacationing orthopedic surgeon from near Toronto met us up north and wanted that baby back in casts pronto, so arranged for us to see him the next week at his clinic. Baby had a casting with him - first time the foot was externally rotated and he did look strange! then this surgeon got us into Childrens Hospital closer to home within 2 weeks. They saw and decided he was ready for tenotomy even though the Ponseti surgeon thought he needed 2 or 3 more castings to recover the correction, and did him the next day! (general anesthesia) Baby was to have that cast off 2 weeks later and go into splints. However the surgeon here said he'd only wear splint at night since he was " so big " . When I protested that I had been instructed STRICTLY by Ponseti doctor that compliance was essential, 23 hours/day for first 3 months, they chuckled and seemed to think I was making a big deal out of nothing. During our 3 hour wait for our 9:30 app't there was a family with a 3 year old who needs repeat surgery and she was bitter about the casual attitude here at children's hosp. So we went back to Toronto doctor to have cast off at 3 weeks and he ordered splint. (I am sure he told me it would be 1 inch wider than hips.) Anyhow, we decided to get orthotics locally (mistake)and phoned the hospital here to know where to go. It was 2 weeks before we could be seen and then 2 weeks before they could get the shoes/splint. I can't understand this since if we had gone ahead and done this in Toronto it would have all been done the very next day! I really appreciate the encouragement that it is important for me as 's mom to push for correct treatment. The Doctor wrote a prescription for the shoes/bar so you would think they could do it correctly? $180.00 later, I am very unhappy that I accepted the shoes as I knew when I saw them that it wasn't as the Dr described. The baby and I have moved back down here (London) with his older siblings as there are some in the University here and his daddy commutes 4 hours each way every w/e. We thought we should be where he could get consistant care, and I wanted to be closer to my other kids. I can see that we will still be on the road as the only doctor we have confidence in is 2 1/2 hours away in Toronto! Thank you so much for responding (and reading this loooong response) Margaret Quote Link to comment Share on other sites More sharing options...
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