Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hello , I am sorry that this has been so frustrating for you so far. I don't have any advice like many of these veteran clubfoot mommys as my baby isn't due until Dec 18 (but has a suspected right club foot). I have been trying to find info and read up on Ponseti so that I hopefully go to a qualified doctor. It can be hard to find. I live in Calgary and was just wondering, since you are in Canada, what doctor you are talking about in your post who was treating Hayden? I am seeing a female doctor for a consult in a couple of weeks so I was curious- I may cancel if this is the same one! I really hope you get some answers here. Everyone is very knowledgable and supportive and I pray that Hayden's treatment will go more smoothly and that he'll have excellent results. Take care, Halley > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: New - Introduction >Date: Thu, 13 Oct 2005 04:14:33 -0000 > >, >I just don't even know where to start. I want to say most >importantly, and without hesitation - take your child and run, run >far, far away from this doctor. I am both saddened and infuriated by >your story. I am livid to think that this doctor has put your son >through this much misery, pain and suffering, and all the while is >making you think that this is normal. This is not normal. I have >heard of a few small sores and skin yeast infections from casts, but >what you are describing and when you said that it smelled like death, >it just made my skin crawl thinking about what this so called doctor >is putting your son through. I am just so upset I can barely type! >The Ponseti method is a gentle manipulation of the feet that is >scientifically explained in the Global Help Organization booklet >which can be found here: >http://www.global-help.org/publications/cf.2.pdf > >The University of Iowa Hospitals and Clinics support a virtual >hospital website which has pages and pages of documentation and >testimonials. >http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html > >Another website with a myriad of information including links to >medical journal published articles: >http://members.tripod.com/ponseti_links-ivil/ >http://members.tripod.com/ponseti_links-ivil/id1.html >If you need more medical journal articles I will find them for you. > >I will stress again that what your son has endured is NOT normal, nor >necessary and I believe you should never ever EVER return to her >office. > >If you would like to share with us more details about your son's >treatment I would be interested to hear more about these casts, >something that might explain why he has had such horrible skin >problems. I have heard about the botox injections but don't really >know that much about them to give any input on them. I know they are >not part of the Ponseti method, and I don't believe they should be. >There are excellent Ponseti method doctors in Canada, what area are >you in? Since your son has already been casted, probably >incorrectly, I would highly recommend going to one of the best. Even >Dr. Ponseti himself if you choose. > >These doctors listed here are those in Canada who have taken the time >to submit case studies to Dr. Ponseti showing that they are using the >method correctly and with much success. I have heard from many other >parents on the group that Dr. Pirani is one of the best but I believe >all four of these are excellent physicians who will take good care of >your son's feet. > > P. Carey, M.D. >London Health Sciences Centre > Campus-W >London ON N6K 4BC Canada >Tel: >Fax: >Email Dr. Carey > >Dr. son >Queen's University >76 Stuart Street >Kingston, Ontario, Canada K7L 2V7 >Tel: >Fax: >Email Dr. son > >Dr. J. Norgrove Penny, M.D. >P.O. Box 5007 >, B.C., V8R 6N3 Canada >Tel: >Fax: >Email Dr. Penny > >Shafique Pirani, MD >205-245 East Columbia Street >New Westminster >British Columbia >Canada V3L 3W4 >Tel: >Fax: >Email Dr. Pirani > >And finally, if you need just moral support we are here. It sounds >like you may have a tough road with convincing your hubby but we are >here to tell you that you are doing the right thing. You know in >your heart that what has been happening is not right and you will do >what momma's do, and that is to get the best care possible for your >baby. Please take care and give that little baby lots of lovin' from >us, and oh, don't keep putting those shoes on him, his feet are >clearly not fully corrected and the shoes will only hurt him. The >best thing you can do at this point is to give him all the toe >kissing and affection you haven't been able to since he's been in >casts. It doesn't matter if his feet relapse a bit at this point, >honestly, the new doctor will cast him properly and begin anew. And >if your husband balks at this you can tell him that I just attended a >clubfoot symposium in which one of the doctors discussed this very >topic. > >Best wishes, > >Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16 hrs.) > > > > > > > > > Hi there, I was referred to this group by another (clubfootcanada) >in > > order to obtain some more information about the Pnseti method of > > treating clubfoot. > > > > Hello All, my name is and my son was born on June 19th , >2005 > > with bilateral clubfoot (idiopathic). We were not aware of the > > condition ahead of his birth, so it was a surprise when he came out! > > I was not freaked out, or worried as I knew right away what it was >and > > that it was treatable, although I didn't know how. We consulted with > > Children's Hospital when he was two days old and were told his were > > " moderate to severe " , which according to our Orthopedic Surgeon was > > unusual for idiopathic. We were also told his treatment would be as > > follows: > > > > 8 weeks of casts (once a week) > > Botox injection in each Achilles tendon > > Boots and bar (24/7 until he's able to stand and then night time >until > > he is 4, partnered with special Nu Balance running shoes) > > > > We left with his first set of casts on. He is now almost four months > > old, has had 12 casts and two Botox injections in each calf and > > just last week was put in the boots and bar. > > > > From the beginning he has had a very difficult time with the health >of > > his skin under the casts. His skin has been raw and weeping with >very > > dry and large patches of eczema. He's gained the reputation of being > > the " purple screamer " at the hospital because he gets so worked up > > when they are treating him. He looks at me with pain in his eyes, > > tears streaming down his face with an expression that says " do >something! " > > > > Six weeks ago, we had a week long break from the casts to heal his > > skin, and even though this was going to set us back, we welcomed >it. I > > realized what I had missed by casting him at two days old. We had > > baths together, I kissed his feet obsessively and we played with >his toes. > > > > Four weeks ago, we had a trial run with the boots and bar because >the > > doctor was concerned about his skin as it was bad right away again. >I > > struggled for two days with them and he kicked them off about a > > jillion times, until I took him back to the hospital and had him > > re-casted. The following appointment he had " two week " casts put on > > and when I took them off last week I was appalled. I had noticed >that > > they were getting smelly, but the backs of both knees and the tops >of > > both feet were raw, weeping, scaly and looked like they had been > > burned. I could not believe the smell - it smelled like death. I was > > reassured by the doctor that it was okay and we are trying the boots > > again. As relieved as I was to make the switch, initially I was not > > finding them any less painful in terms of him screaming his head off > > when I put them on. One of his heels still isn't really dropped down > > enough for the boot and I find that even though I seem to get them >on > > okay, his feet slip below the marks they made on them for me. It has > > been frustrating to say the least. He was very upset the next > > morning, crying a lot and that is unusual behaviour for him as he is > > generally sunny most of the time. There has been improvement in >that > > area, but he still kicks them off, his feet slip inside of them and >he > > has devised a way to kick that loosens the nut on one of the boots! > > > > Yesterday I went for a follow up and watched as the doctor reefed >his > > bad (left) foot up to get the number reading she wanted. He was > > screaming and I was trying to keep it together. In addition to >that, > > when I mentioned that I co-sleep with him the doctor started >lecturing > > me about sleeping in the same bed with him because of the hardware > > maybe not allowing him to move under blankets, blah blah blah. I > > found myself having to justify my lifestyle to her and I was very > > irked. I didn't bother to tell her that when he does sleep in his > > crib, he tummy sleeps as I probably would have been criticized for > > that too! I feel very often that she talks down to me and on the >rare > > occasions that my husband accompanies me to the appointments, she >will > > talk directly to him and over me. This is perhaps because he has a > > degree and I don't. > > > > It has been recommended to me by others in the Clubfoot Canada group > > that I go and see the local doctor that practices the Ponseti >Method. > > My biggest obstacle will be my husband in this endeavour because he > > feels the Botox is cutting edge and is happy with the way things are > > going (of course he is, he's not there holding down his son while he > > screams every week!) I approached him last night about this issue >and > > he agreed that I could look into it, but what he wants to see is > > documentation on this method - and seriously, the more " medical > > journal " it is, the better as he understands numbers and statistics > > better than testimonials. I presented to him that since I am the >one > > who is largely dealing with this issue why would it matter which > > doctor I took Hayden to if it meant a more gentle treatment for >him? > > I haven't fully convinced him, but I am determined to stand my >ground > > on this. > > > > Please, if anyone can help me, either by directing me to medical > > articles, websites or your own stories on this group, I would really > > appreciate it! I am feeling very lost and alone, relatively > > unsupported (emotionally) by my husband and am just looking for some > > " been there " testimonials. Please feel free to email me privately >if > > you like, because misery sure loves company. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hello Halley, I have been chatting with on the cfcanada site and Hayden has been treated at BC Childrens in Vancouver. I am not sure if there is a doc using Ponseti in Calgary yet, I would be suprised if there isn't. You should post your question on the cfcanada board, the add is below. If you don't get a name, I have an appt with a great Ponseti doctor - Dr. Pirani - on the 25th, I will ask him if he knows anyone practicing Ponseti. Like I said I would be suprised if there isn't, the word is spreading, people are demanding Ponseti treatment more and more and with good reason!!! Congrats on your pregnancy! & Grace http://health.groups.yahoo.com/group/clubfootcanada/ > > > > > > Hi there, I was referred to this group by another (clubfootcanada) > >in > > > order to obtain some more information about the Pnseti method of > > > treating clubfoot. > > > > > > Hello All, my name is and my son was born on June 19th , > >2005 > > > with bilateral clubfoot (idiopathic). We were not aware of the > > > condition ahead of his birth, so it was a surprise when he came out! > > > I was not freaked out, or worried as I knew right away what it was > >and > > > that it was treatable, although I didn't know how. We consulted with > > > Children's Hospital when he was two days old and were told his were > > > " moderate to severe " , which according to our Orthopedic Surgeon was > > > unusual for idiopathic. We were also told his treatment would be as > > > follows: > > > > > > 8 weeks of casts (once a week) > > > Botox injection in each Achilles tendon > > > Boots and bar (24/7 until he's able to stand and then night time > >until > > > he is 4, partnered with special Nu Balance running shoes) > > > > > > We left with his first set of casts on. He is now almost four months > > > old, has had 12 casts and two Botox injections in each calf and > > > just last week was put in the boots and bar. > > > > > > From the beginning he has had a very difficult time with the health > >of > > > his skin under the casts. His skin has been raw and weeping with > >very > > > dry and large patches of eczema. He's gained the reputation of being > > > the " purple screamer " at the hospital because he gets so worked up > > > when they are treating him. He looks at me with pain in his eyes, > > > tears streaming down his face with an expression that says " do > >something! " > > > > > > Six weeks ago, we had a week long break from the casts to heal his > > > skin, and even though this was going to set us back, we welcomed > >it. I > > > realized what I had missed by casting him at two days old. We had > > > baths together, I kissed his feet obsessively and we played with > >his toes. > > > > > > Four weeks ago, we had a trial run with the boots and bar because > >the > > > doctor was concerned about his skin as it was bad right away again. > >I > > > struggled for two days with them and he kicked them off about a > > > jillion times, until I took him back to the hospital and had him > > > re-casted. The following appointment he had " two week " casts put on > > > and when I took them off last week I was appalled. I had noticed > >that > > > they were getting smelly, but the backs of both knees and the tops > >of > > > both feet were raw, weeping, scaly and looked like they had been > > > burned. I could not believe the smell - it smelled like death. I was > > > reassured by the doctor that it was okay and we are trying the boots > > > again. As relieved as I was to make the switch, initially I was not > > > finding them any less painful in terms of him screaming his head off > > > when I put them on. One of his heels still isn't really dropped down > > > enough for the boot and I find that even though I seem to get them > >on > > > okay, his feet slip below the marks they made on them for me. It has > > > been frustrating to say the least. He was very upset the next > > > morning, crying a lot and that is unusual behaviour for him as he is > > > generally sunny most of the time. There has been improvement in > >that > > > area, but he still kicks them off, his feet slip inside of them and > >he > > > has devised a way to kick that loosens the nut on one of the boots! > > > > > > Yesterday I went for a follow up and watched as the doctor reefed > >his > > > bad (left) foot up to get the number reading she wanted. He was > > > screaming and I was trying to keep it together. In addition to > >that, > > > when I mentioned that I co-sleep with him the doctor started > >lecturing > > > me about sleeping in the same bed with him because of the hardware > > > maybe not allowing him to move under blankets, blah blah blah. I > > > found myself having to justify my lifestyle to her and I was very > > > irked. I didn't bother to tell her that when he does sleep in his > > > crib, he tummy sleeps as I probably would have been criticized for > > > that too! I feel very often that she talks down to me and on the > >rare > > > occasions that my husband accompanies me to the appointments, she > >will > > > talk directly to him and over me. This is perhaps because he has a > > > degree and I don't. > > > > > > It has been recommended to me by others in the Clubfoot Canada group > > > that I go and see the local doctor that practices the Ponseti > >Method. > > > My biggest obstacle will be my husband in this endeavour because he > > > feels the Botox is cutting edge and is happy with the way things are > > > going (of course he is, he's not there holding down his son while he > > > screams every week!) I approached him last night about this issue > >and > > > he agreed that I could look into it, but what he wants to see is > > > documentation on this method - and seriously, the more " medical > > > journal " it is, the better as he understands numbers and statistics > > > better than testimonials. I presented to him that since I am the > >one > > > who is largely dealing with this issue why would it matter which > > > doctor I took Hayden to if it meant a more gentle treatment for > >him? > > > I haven't fully convinced him, but I am determined to stand my > >ground > > > on this. > > > > > > Please, if anyone can help me, either by directing me to medical > > > articles, websites or your own stories on this group, I would really > > > appreciate it! I am feeling very lost and alone, relatively > > > unsupported (emotionally) by my husband and am just looking for some > > > " been there " testimonials. Please feel free to email me privately > >if > > > you like, because misery sure loves company. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hello Halley, I have been chatting with on the cfcanada site and Hayden has been treated at BC Childrens in Vancouver. I am not sure if there is a doc using Ponseti in Calgary yet, I would be suprised if there isn't. You should post your question on the cfcanada board, the add is below. If you don't get a name, I have an appt with a great Ponseti doctor - Dr. Pirani - on the 25th, I will ask him if he knows anyone practicing Ponseti. Like I said I would be suprised if there isn't, the word is spreading, people are demanding Ponseti treatment more and more and with good reason!!! Congrats on your pregnancy! & Grace http://health.groups.yahoo.com/group/clubfootcanada/ > > > > > > Hi there, I was referred to this group by another (clubfootcanada) > >in > > > order to obtain some more information about the Pnseti method of > > > treating clubfoot. > > > > > > Hello All, my name is and my son was born on June 19th , > >2005 > > > with bilateral clubfoot (idiopathic). We were not aware of the > > > condition ahead of his birth, so it was a surprise when he came out! > > > I was not freaked out, or worried as I knew right away what it was > >and > > > that it was treatable, although I didn't know how. We consulted with > > > Children's Hospital when he was two days old and were told his were > > > " moderate to severe " , which according to our Orthopedic Surgeon was > > > unusual for idiopathic. We were also told his treatment would be as > > > follows: > > > > > > 8 weeks of casts (once a week) > > > Botox injection in each Achilles tendon > > > Boots and bar (24/7 until he's able to stand and then night time > >until > > > he is 4, partnered with special Nu Balance running shoes) > > > > > > We left with his first set of casts on. He is now almost four months > > > old, has had 12 casts and two Botox injections in each calf and > > > just last week was put in the boots and bar. > > > > > > From the beginning he has had a very difficult time with the health > >of > > > his skin under the casts. His skin has been raw and weeping with > >very > > > dry and large patches of eczema. He's gained the reputation of being > > > the " purple screamer " at the hospital because he gets so worked up > > > when they are treating him. He looks at me with pain in his eyes, > > > tears streaming down his face with an expression that says " do > >something! " > > > > > > Six weeks ago, we had a week long break from the casts to heal his > > > skin, and even though this was going to set us back, we welcomed > >it. I > > > realized what I had missed by casting him at two days old. We had > > > baths together, I kissed his feet obsessively and we played with > >his toes. > > > > > > Four weeks ago, we had a trial run with the boots and bar because > >the > > > doctor was concerned about his skin as it was bad right away again. > >I > > > struggled for two days with them and he kicked them off about a > > > jillion times, until I took him back to the hospital and had him > > > re-casted. The following appointment he had " two week " casts put on > > > and when I took them off last week I was appalled. I had noticed > >that > > > they were getting smelly, but the backs of both knees and the tops > >of > > > both feet were raw, weeping, scaly and looked like they had been > > > burned. I could not believe the smell - it smelled like death. I was > > > reassured by the doctor that it was okay and we are trying the boots > > > again. As relieved as I was to make the switch, initially I was not > > > finding them any less painful in terms of him screaming his head off > > > when I put them on. One of his heels still isn't really dropped down > > > enough for the boot and I find that even though I seem to get them > >on > > > okay, his feet slip below the marks they made on them for me. It has > > > been frustrating to say the least. He was very upset the next > > > morning, crying a lot and that is unusual behaviour for him as he is > > > generally sunny most of the time. There has been improvement in > >that > > > area, but he still kicks them off, his feet slip inside of them and > >he > > > has devised a way to kick that loosens the nut on one of the boots! > > > > > > Yesterday I went for a follow up and watched as the doctor reefed > >his > > > bad (left) foot up to get the number reading she wanted. He was > > > screaming and I was trying to keep it together. In addition to > >that, > > > when I mentioned that I co-sleep with him the doctor started > >lecturing > > > me about sleeping in the same bed with him because of the hardware > > > maybe not allowing him to move under blankets, blah blah blah. I > > > found myself having to justify my lifestyle to her and I was very > > > irked. I didn't bother to tell her that when he does sleep in his > > > crib, he tummy sleeps as I probably would have been criticized for > > > that too! I feel very often that she talks down to me and on the > >rare > > > occasions that my husband accompanies me to the appointments, she > >will > > > talk directly to him and over me. This is perhaps because he has a > > > degree and I don't. > > > > > > It has been recommended to me by others in the Clubfoot Canada group > > > that I go and see the local doctor that practices the Ponseti > >Method. > > > My biggest obstacle will be my husband in this endeavour because he > > > feels the Botox is cutting edge and is happy with the way things are > > > going (of course he is, he's not there holding down his son while he > > > screams every week!) I approached him last night about this issue > >and > > > he agreed that I could look into it, but what he wants to see is > > > documentation on this method - and seriously, the more " medical > > > journal " it is, the better as he understands numbers and statistics > > > better than testimonials. I presented to him that since I am the > >one > > > who is largely dealing with this issue why would it matter which > > > doctor I took Hayden to if it meant a more gentle treatment for > >him? > > > I haven't fully convinced him, but I am determined to stand my > >ground > > > on this. > > > > > > Please, if anyone can help me, either by directing me to medical > > > articles, websites or your own stories on this group, I would really > > > appreciate it! I am feeling very lost and alone, relatively > > > unsupported (emotionally) by my husband and am just looking for some > > > " been there " testimonials. Please feel free to email me privately > >if > > > you like, because misery sure loves company. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , Thanks for the information! Actually I talked to Dr. Pirani a week or so ago and he recommended two doctors here in Calgary. He said he doesn't know how closely they are following the Ponseti method, how many feet they've treated, and success rates etc but to go and speak with both of them and find out. The one doctor, Dr. Kiefer, was trained by Dr. Pirani and he did say the other doctor, Dr.Joughin, is very conscientious but said to be sure to ask all pertinent questions. I was just hoping that wasn't referring to her! We may just go straight to Dr.Pirani anyway if we have any hesitation at all about these doctors. D.r Pirani was so nice and I know I would feel completely comfortable with him. He was funny too he said in referring to choosing a doctor " Lots of people have drivers licenses, but that doesn't mean they are good drivers! " Isn't that the truth, especially after reading the experiences of some of the parents here. Anyway, thanks again and I hope Grace is doing well. I was also wondering, where do you get the shoes and bar in Vancouver? I always hear about the Markells and s but wasn't sure what is available closer to home. Take care, Halley > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: New - Introduction >Date: Thu, 13 Oct 2005 05:52:28 -0000 > >Hello Halley, > >I have been chatting with on the cfcanada site and Hayden has >been treated at BC Childrens in Vancouver. I am not sure if there is >a doc using Ponseti in Calgary yet, I would be suprised if there >isn't. > >You should post your question on the cfcanada board, the add is >below. If you don't get a name, I have an appt with a great Ponseti >doctor - Dr. Pirani - on the 25th, I will ask him if he knows anyone >practicing Ponseti. Like I said I would be suprised if there isn't, >the word is spreading, people are demanding Ponseti treatment more >and more and with good reason!!! > >Congrats on your pregnancy! > > & Grace > > > > > >http://health.groups.yahoo.com/group/clubfootcanada/ > > > > > > > > > > > > Hi there, I was referred to this group by another >(clubfootcanada) > > >in > > > > order to obtain some more information about the Pnseti method of > > > > treating clubfoot. > > > > > > > > Hello All, my name is and my son was born on June 19th , > > >2005 > > > > with bilateral clubfoot (idiopathic). We were not aware of the > > > > condition ahead of his birth, so it was a surprise when he came >out! > > > > I was not freaked out, or worried as I knew right away what it >was > > >and > > > > that it was treatable, although I didn't know how. We consulted >with > > > > Children's Hospital when he was two days old and were told his >were > > > > " moderate to severe " , which according to our Orthopedic Surgeon >was > > > > unusual for idiopathic. We were also told his treatment would >be as > > > > follows: > > > > > > > > 8 weeks of casts (once a week) > > > > Botox injection in each Achilles tendon > > > > Boots and bar (24/7 until he's able to stand and then night time > > >until > > > > he is 4, partnered with special Nu Balance running shoes) > > > > > > > > We left with his first set of casts on. He is now almost four >months > > > > old, has had 12 casts and two Botox injections in each calf and > > > > just last week was put in the boots and bar. > > > > > > > > From the beginning he has had a very difficult time with the >health > > >of > > > > his skin under the casts. His skin has been raw and weeping with > > >very > > > > dry and large patches of eczema. He's gained the reputation of >being > > > > the " purple screamer " at the hospital because he gets so worked >up > > > > when they are treating him. He looks at me with pain in his >eyes, > > > > tears streaming down his face with an expression that says " do > > >something! " > > > > > > > > Six weeks ago, we had a week long break from the casts to heal >his > > > > skin, and even though this was going to set us back, we welcomed > > >it. I > > > > realized what I had missed by casting him at two days old. We >had > > > > baths together, I kissed his feet obsessively and we played with > > >his toes. > > > > > > > > Four weeks ago, we had a trial run with the boots and bar >because > > >the > > > > doctor was concerned about his skin as it was bad right away >again. > > >I > > > > struggled for two days with them and he kicked them off about a > > > > jillion times, until I took him back to the hospital and had him > > > > re-casted. The following appointment he had " two week " casts >put on > > > > and when I took them off last week I was appalled. I had noticed > > >that > > > > they were getting smelly, but the backs of both knees and the >tops > > >of > > > > both feet were raw, weeping, scaly and looked like they had been > > > > burned. I could not believe the smell - it smelled like death. >I was > > > > reassured by the doctor that it was okay and we are trying the >boots > > > > again. As relieved as I was to make the switch, initially I was >not > > > > finding them any less painful in terms of him screaming his >head off > > > > when I put them on. One of his heels still isn't really dropped >down > > > > enough for the boot and I find that even though I seem to get >them > > >on > > > > okay, his feet slip below the marks they made on them for me. >It has > > > > been frustrating to say the least. He was very upset the next > > > > morning, crying a lot and that is unusual behaviour for him as >he is > > > > generally sunny most of the time. There has been improvement in > > >that > > > > area, but he still kicks them off, his feet slip inside of them >and > > >he > > > > has devised a way to kick that loosens the nut on one of the >boots! > > > > > > > > Yesterday I went for a follow up and watched as the doctor >reefed > > >his > > > > bad (left) foot up to get the number reading she wanted. He was > > > > screaming and I was trying to keep it together. In addition to > > >that, > > > > when I mentioned that I co-sleep with him the doctor started > > >lecturing > > > > me about sleeping in the same bed with him because of the >hardware > > > > maybe not allowing him to move under blankets, blah blah blah. >I > > > > found myself having to justify my lifestyle to her and I was >very > > > > irked. I didn't bother to tell her that when he does sleep in >his > > > > crib, he tummy sleeps as I probably would have been criticized >for > > > > that too! I feel very often that she talks down to me and on >the > > >rare > > > > occasions that my husband accompanies me to the appointments, >she > > >will > > > > talk directly to him and over me. This is perhaps because he >has a > > > > degree and I don't. > > > > > > > > It has been recommended to me by others in the Clubfoot Canada >group > > > > that I go and see the local doctor that practices the Ponseti > > >Method. > > > > My biggest obstacle will be my husband in this endeavour >because he > > > > feels the Botox is cutting edge and is happy with the way >things are > > > > going (of course he is, he's not there holding down his son >while he > > > > screams every week!) I approached him last night about this >issue > > >and > > > > he agreed that I could look into it, but what he wants to see is > > > > documentation on this method - and seriously, the more " medical > > > > journal " it is, the better as he understands numbers and >statistics > > > > better than testimonials. I presented to him that since I am >the > > >one > > > > who is largely dealing with this issue why would it matter which > > > > doctor I took Hayden to if it meant a more gentle treatment for > > >him? > > > > I haven't fully convinced him, but I am determined to stand my > > >ground > > > > on this. > > > > > > > > Please, if anyone can help me, either by directing me to medical > > > > articles, websites or your own stories on this group, I would >really > > > > appreciate it! I am feeling very lost and alone, relatively > > > > unsupported (emotionally) by my husband and am just looking for >some > > > > " been there " testimonials. Please feel free to email me >privately > > >if > > > > you like, because misery sure loves company. > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi , Thanks for the information! Actually I talked to Dr. Pirani a week or so ago and he recommended two doctors here in Calgary. He said he doesn't know how closely they are following the Ponseti method, how many feet they've treated, and success rates etc but to go and speak with both of them and find out. The one doctor, Dr. Kiefer, was trained by Dr. Pirani and he did say the other doctor, Dr.Joughin, is very conscientious but said to be sure to ask all pertinent questions. I was just hoping that wasn't referring to her! We may just go straight to Dr.Pirani anyway if we have any hesitation at all about these doctors. D.r Pirani was so nice and I know I would feel completely comfortable with him. He was funny too he said in referring to choosing a doctor " Lots of people have drivers licenses, but that doesn't mean they are good drivers! " Isn't that the truth, especially after reading the experiences of some of the parents here. Anyway, thanks again and I hope Grace is doing well. I was also wondering, where do you get the shoes and bar in Vancouver? I always hear about the Markells and s but wasn't sure what is available closer to home. Take care, Halley > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: New - Introduction >Date: Thu, 13 Oct 2005 05:52:28 -0000 > >Hello Halley, > >I have been chatting with on the cfcanada site and Hayden has >been treated at BC Childrens in Vancouver. I am not sure if there is >a doc using Ponseti in Calgary yet, I would be suprised if there >isn't. > >You should post your question on the cfcanada board, the add is >below. If you don't get a name, I have an appt with a great Ponseti >doctor - Dr. Pirani - on the 25th, I will ask him if he knows anyone >practicing Ponseti. Like I said I would be suprised if there isn't, >the word is spreading, people are demanding Ponseti treatment more >and more and with good reason!!! > >Congrats on your pregnancy! > > & Grace > > > > > >http://health.groups.yahoo.com/group/clubfootcanada/ > > > > > > > > > > > > Hi there, I was referred to this group by another >(clubfootcanada) > > >in > > > > order to obtain some more information about the Pnseti method of > > > > treating clubfoot. > > > > > > > > Hello All, my name is and my son was born on June 19th , > > >2005 > > > > with bilateral clubfoot (idiopathic). We were not aware of the > > > > condition ahead of his birth, so it was a surprise when he came >out! > > > > I was not freaked out, or worried as I knew right away what it >was > > >and > > > > that it was treatable, although I didn't know how. We consulted >with > > > > Children's Hospital when he was two days old and were told his >were > > > > " moderate to severe " , which according to our Orthopedic Surgeon >was > > > > unusual for idiopathic. We were also told his treatment would >be as > > > > follows: > > > > > > > > 8 weeks of casts (once a week) > > > > Botox injection in each Achilles tendon > > > > Boots and bar (24/7 until he's able to stand and then night time > > >until > > > > he is 4, partnered with special Nu Balance running shoes) > > > > > > > > We left with his first set of casts on. He is now almost four >months > > > > old, has had 12 casts and two Botox injections in each calf and > > > > just last week was put in the boots and bar. > > > > > > > > From the beginning he has had a very difficult time with the >health > > >of > > > > his skin under the casts. His skin has been raw and weeping with > > >very > > > > dry and large patches of eczema. He's gained the reputation of >being > > > > the " purple screamer " at the hospital because he gets so worked >up > > > > when they are treating him. He looks at me with pain in his >eyes, > > > > tears streaming down his face with an expression that says " do > > >something! " > > > > > > > > Six weeks ago, we had a week long break from the casts to heal >his > > > > skin, and even though this was going to set us back, we welcomed > > >it. I > > > > realized what I had missed by casting him at two days old. We >had > > > > baths together, I kissed his feet obsessively and we played with > > >his toes. > > > > > > > > Four weeks ago, we had a trial run with the boots and bar >because > > >the > > > > doctor was concerned about his skin as it was bad right away >again. > > >I > > > > struggled for two days with them and he kicked them off about a > > > > jillion times, until I took him back to the hospital and had him > > > > re-casted. The following appointment he had " two week " casts >put on > > > > and when I took them off last week I was appalled. I had noticed > > >that > > > > they were getting smelly, but the backs of both knees and the >tops > > >of > > > > both feet were raw, weeping, scaly and looked like they had been > > > > burned. I could not believe the smell - it smelled like death. >I was > > > > reassured by the doctor that it was okay and we are trying the >boots > > > > again. As relieved as I was to make the switch, initially I was >not > > > > finding them any less painful in terms of him screaming his >head off > > > > when I put them on. One of his heels still isn't really dropped >down > > > > enough for the boot and I find that even though I seem to get >them > > >on > > > > okay, his feet slip below the marks they made on them for me. >It has > > > > been frustrating to say the least. He was very upset the next > > > > morning, crying a lot and that is unusual behaviour for him as >he is > > > > generally sunny most of the time. There has been improvement in > > >that > > > > area, but he still kicks them off, his feet slip inside of them >and > > >he > > > > has devised a way to kick that loosens the nut on one of the >boots! > > > > > > > > Yesterday I went for a follow up and watched as the doctor >reefed > > >his > > > > bad (left) foot up to get the number reading she wanted. He was > > > > screaming and I was trying to keep it together. In addition to > > >that, > > > > when I mentioned that I co-sleep with him the doctor started > > >lecturing > > > > me about sleeping in the same bed with him because of the >hardware > > > > maybe not allowing him to move under blankets, blah blah blah. >I > > > > found myself having to justify my lifestyle to her and I was >very > > > > irked. I didn't bother to tell her that when he does sleep in >his > > > > crib, he tummy sleeps as I probably would have been criticized >for > > > > that too! I feel very often that she talks down to me and on >the > > >rare > > > > occasions that my husband accompanies me to the appointments, >she > > >will > > > > talk directly to him and over me. This is perhaps because he >has a > > > > degree and I don't. > > > > > > > > It has been recommended to me by others in the Clubfoot Canada >group > > > > that I go and see the local doctor that practices the Ponseti > > >Method. > > > > My biggest obstacle will be my husband in this endeavour >because he > > > > feels the Botox is cutting edge and is happy with the way >things are > > > > going (of course he is, he's not there holding down his son >while he > > > > screams every week!) I approached him last night about this >issue > > >and > > > > he agreed that I could look into it, but what he wants to see is > > > > documentation on this method - and seriously, the more " medical > > > > journal " it is, the better as he understands numbers and >statistics > > > > better than testimonials. I presented to him that since I am >the > > >one > > > > who is largely dealing with this issue why would it matter which > > > > doctor I took Hayden to if it meant a more gentle treatment for > > >him? > > > > I haven't fully convinced him, but I am determined to stand my > > >ground > > > > on this. > > > > > > > > Please, if anyone can help me, either by directing me to medical > > > > articles, websites or your own stories on this group, I would >really > > > > appreciate it! I am feeling very lost and alone, relatively > > > > unsupported (emotionally) by my husband and am just looking for >some > > > > " been there " testimonials. Please feel free to email me >privately > > >if > > > > you like, because misery sure loves company. > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Right Right right, duh, now I remember, OK, it's late, I can blame my brain freeze on that. I totally remember your posts etc now. Like I had said before, I would really go with the doc that Dr. Pirani trained and If your not happy with him then come out to BC. We get our shoes from an awesome orthotist here, she used to attend Dr. Pirani's casting clinics but found a job with a new orthodics store that gives her much more opportunities. The hospital has a contract with her old orthodics co. but I wanted to continue to see her. So we go to the orthodics store and buy them there. She is soo helpful, she has right unilateral cf so is just amazing. The doc you see will have an orthotist that he works with. I am from Calgary, moved to Vancouver 16yrs ago, lots of my family are still there. My uncle is a doctor there (Dr. Kent Remington). I may ask him if he has heard anything about Ponseti, would be interesting to hear what he has heard. Hope you are feeling well, you must be getting excited!! & Grace ) > > > > > > > > > > Hi there, I was referred to this group by another > >(clubfootcanada) > > > >in > > > > > order to obtain some more information about the Pnseti method of > > > > > treating clubfoot. > > > > > > > > > > Hello All, my name is and my son was born on June 19th , > > > >2005 > > > > > with bilateral clubfoot (idiopathic). We were not aware of the > > > > > condition ahead of his birth, so it was a surprise when he came > >out! > > > > > I was not freaked out, or worried as I knew right away what it > >was > > > >and > > > > > that it was treatable, although I didn't know how. We consulted > >with > > > > > Children's Hospital when he was two days old and were told his > >were > > > > > " moderate to severe " , which according to our Orthopedic Surgeon > >was > > > > > unusual for idiopathic. We were also told his treatment would > >be as > > > > > follows: > > > > > > > > > > 8 weeks of casts (once a week) > > > > > Botox injection in each Achilles tendon > > > > > Boots and bar (24/7 until he's able to stand and then night time > > > >until > > > > > he is 4, partnered with special Nu Balance running shoes) > > > > > > > > > > We left with his first set of casts on. He is now almost four > >months > > > > > old, has had 12 casts and two Botox injections in each calf and > > > > > just last week was put in the boots and bar. > > > > > > > > > > From the beginning he has had a very difficult time with the > >health > > > >of > > > > > his skin under the casts. His skin has been raw and weeping with > > > >very > > > > > dry and large patches of eczema. He's gained the reputation of > >being > > > > > the " purple screamer " at the hospital because he gets so worked > >up > > > > > when they are treating him. He looks at me with pain in his > >eyes, > > > > > tears streaming down his face with an expression that says " do > > > >something! " > > > > > > > > > > Six weeks ago, we had a week long break from the casts to heal > >his > > > > > skin, and even though this was going to set us back, we welcomed > > > >it. I > > > > > realized what I had missed by casting him at two days old. We > >had > > > > > baths together, I kissed his feet obsessively and we played with > > > >his toes. > > > > > > > > > > Four weeks ago, we had a trial run with the boots and bar > >because > > > >the > > > > > doctor was concerned about his skin as it was bad right away > >again. > > > >I > > > > > struggled for two days with them and he kicked them off about a > > > > > jillion times, until I took him back to the hospital and had him > > > > > re-casted. The following appointment he had " two week " casts > >put on > > > > > and when I took them off last week I was appalled. I had noticed > > > >that > > > > > they were getting smelly, but the backs of both knees and the > >tops > > > >of > > > > > both feet were raw, weeping, scaly and looked like they had been > > > > > burned. I could not believe the smell - it smelled like death. > >I was > > > > > reassured by the doctor that it was okay and we are trying the > >boots > > > > > again. As relieved as I was to make the switch, initially I was > >not > > > > > finding them any less painful in terms of him screaming his > >head off > > > > > when I put them on. One of his heels still isn't really dropped > >down > > > > > enough for the boot and I find that even though I seem to get > >them > > > >on > > > > > okay, his feet slip below the marks they made on them for me. > >It has > > > > > been frustrating to say the least. He was very upset the next > > > > > morning, crying a lot and that is unusual behaviour for him as > >he is > > > > > generally sunny most of the time. There has been improvement in > > > >that > > > > > area, but he still kicks them off, his feet slip inside of them > >and > > > >he > > > > > has devised a way to kick that loosens the nut on one of the > >boots! > > > > > > > > > > Yesterday I went for a follow up and watched as the doctor > >reefed > > > >his > > > > > bad (left) foot up to get the number reading she wanted. He was > > > > > screaming and I was trying to keep it together. In addition to > > > >that, > > > > > when I mentioned that I co-sleep with him the doctor started > > > >lecturing > > > > > me about sleeping in the same bed with him because of the > >hardware > > > > > maybe not allowing him to move under blankets, blah blah blah. > >I > > > > > found myself having to justify my lifestyle to her and I was > >very > > > > > irked. I didn't bother to tell her that when he does sleep in > >his > > > > > crib, he tummy sleeps as I probably would have been criticized > >for > > > > > that too! I feel very often that she talks down to me and on > >the > > > >rare > > > > > occasions that my husband accompanies me to the appointments, > >she > > > >will > > > > > talk directly to him and over me. This is perhaps because he > >has a > > > > > degree and I don't. > > > > > > > > > > It has been recommended to me by others in the Clubfoot Canada > >group > > > > > that I go and see the local doctor that practices the Ponseti > > > >Method. > > > > > My biggest obstacle will be my husband in this endeavour > >because he > > > > > feels the Botox is cutting edge and is happy with the way > >things are > > > > > going (of course he is, he's not there holding down his son > >while he > > > > > screams every week!) I approached him last night about this > >issue > > > >and > > > > > he agreed that I could look into it, but what he wants to see is > > > > > documentation on this method - and seriously, the more " medical > > > > > journal " it is, the better as he understands numbers and > >statistics > > > > > better than testimonials. I presented to him that since I am > >the > > > >one > > > > > who is largely dealing with this issue why would it matter which > > > > > doctor I took Hayden to if it meant a more gentle treatment for > > > >him? > > > > > I haven't fully convinced him, but I am determined to stand my > > > >ground > > > > > on this. > > > > > > > > > > Please, if anyone can help me, either by directing me to medical > > > > > articles, websites or your own stories on this group, I would > >really > > > > > appreciate it! I am feeling very lost and alone, relatively > > > > > unsupported (emotionally) by my husband and am just looking for > >some > > > > > " been there " testimonials. Please feel free to email me > >privately > > > >if > > > > > you like, because misery sure loves company. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Right Right right, duh, now I remember, OK, it's late, I can blame my brain freeze on that. I totally remember your posts etc now. Like I had said before, I would really go with the doc that Dr. Pirani trained and If your not happy with him then come out to BC. We get our shoes from an awesome orthotist here, she used to attend Dr. Pirani's casting clinics but found a job with a new orthodics store that gives her much more opportunities. The hospital has a contract with her old orthodics co. but I wanted to continue to see her. So we go to the orthodics store and buy them there. She is soo helpful, she has right unilateral cf so is just amazing. The doc you see will have an orthotist that he works with. I am from Calgary, moved to Vancouver 16yrs ago, lots of my family are still there. My uncle is a doctor there (Dr. Kent Remington). I may ask him if he has heard anything about Ponseti, would be interesting to hear what he has heard. Hope you are feeling well, you must be getting excited!! & Grace ) > > > > > > > > > > Hi there, I was referred to this group by another > >(clubfootcanada) > > > >in > > > > > order to obtain some more information about the Pnseti method of > > > > > treating clubfoot. > > > > > > > > > > Hello All, my name is and my son was born on June 19th , > > > >2005 > > > > > with bilateral clubfoot (idiopathic). We were not aware of the > > > > > condition ahead of his birth, so it was a surprise when he came > >out! > > > > > I was not freaked out, or worried as I knew right away what it > >was > > > >and > > > > > that it was treatable, although I didn't know how. We consulted > >with > > > > > Children's Hospital when he was two days old and were told his > >were > > > > > " moderate to severe " , which according to our Orthopedic Surgeon > >was > > > > > unusual for idiopathic. We were also told his treatment would > >be as > > > > > follows: > > > > > > > > > > 8 weeks of casts (once a week) > > > > > Botox injection in each Achilles tendon > > > > > Boots and bar (24/7 until he's able to stand and then night time > > > >until > > > > > he is 4, partnered with special Nu Balance running shoes) > > > > > > > > > > We left with his first set of casts on. He is now almost four > >months > > > > > old, has had 12 casts and two Botox injections in each calf and > > > > > just last week was put in the boots and bar. > > > > > > > > > > From the beginning he has had a very difficult time with the > >health > > > >of > > > > > his skin under the casts. His skin has been raw and weeping with > > > >very > > > > > dry and large patches of eczema. He's gained the reputation of > >being > > > > > the " purple screamer " at the hospital because he gets so worked > >up > > > > > when they are treating him. He looks at me with pain in his > >eyes, > > > > > tears streaming down his face with an expression that says " do > > > >something! " > > > > > > > > > > Six weeks ago, we had a week long break from the casts to heal > >his > > > > > skin, and even though this was going to set us back, we welcomed > > > >it. I > > > > > realized what I had missed by casting him at two days old. We > >had > > > > > baths together, I kissed his feet obsessively and we played with > > > >his toes. > > > > > > > > > > Four weeks ago, we had a trial run with the boots and bar > >because > > > >the > > > > > doctor was concerned about his skin as it was bad right away > >again. > > > >I > > > > > struggled for two days with them and he kicked them off about a > > > > > jillion times, until I took him back to the hospital and had him > > > > > re-casted. The following appointment he had " two week " casts > >put on > > > > > and when I took them off last week I was appalled. I had noticed > > > >that > > > > > they were getting smelly, but the backs of both knees and the > >tops > > > >of > > > > > both feet were raw, weeping, scaly and looked like they had been > > > > > burned. I could not believe the smell - it smelled like death. > >I was > > > > > reassured by the doctor that it was okay and we are trying the > >boots > > > > > again. As relieved as I was to make the switch, initially I was > >not > > > > > finding them any less painful in terms of him screaming his > >head off > > > > > when I put them on. One of his heels still isn't really dropped > >down > > > > > enough for the boot and I find that even though I seem to get > >them > > > >on > > > > > okay, his feet slip below the marks they made on them for me. > >It has > > > > > been frustrating to say the least. He was very upset the next > > > > > morning, crying a lot and that is unusual behaviour for him as > >he is > > > > > generally sunny most of the time. There has been improvement in > > > >that > > > > > area, but he still kicks them off, his feet slip inside of them > >and > > > >he > > > > > has devised a way to kick that loosens the nut on one of the > >boots! > > > > > > > > > > Yesterday I went for a follow up and watched as the doctor > >reefed > > > >his > > > > > bad (left) foot up to get the number reading she wanted. He was > > > > > screaming and I was trying to keep it together. In addition to > > > >that, > > > > > when I mentioned that I co-sleep with him the doctor started > > > >lecturing > > > > > me about sleeping in the same bed with him because of the > >hardware > > > > > maybe not allowing him to move under blankets, blah blah blah. > >I > > > > > found myself having to justify my lifestyle to her and I was > >very > > > > > irked. I didn't bother to tell her that when he does sleep in > >his > > > > > crib, he tummy sleeps as I probably would have been criticized > >for > > > > > that too! I feel very often that she talks down to me and on > >the > > > >rare > > > > > occasions that my husband accompanies me to the appointments, > >she > > > >will > > > > > talk directly to him and over me. This is perhaps because he > >has a > > > > > degree and I don't. > > > > > > > > > > It has been recommended to me by others in the Clubfoot Canada > >group > > > > > that I go and see the local doctor that practices the Ponseti > > > >Method. > > > > > My biggest obstacle will be my husband in this endeavour > >because he > > > > > feels the Botox is cutting edge and is happy with the way > >things are > > > > > going (of course he is, he's not there holding down his son > >while he > > > > > screams every week!) I approached him last night about this > >issue > > > >and > > > > > he agreed that I could look into it, but what he wants to see is > > > > > documentation on this method - and seriously, the more " medical > > > > > journal " it is, the better as he understands numbers and > >statistics > > > > > better than testimonials. I presented to him that since I am > >the > > > >one > > > > > who is largely dealing with this issue why would it matter which > > > > > doctor I took Hayden to if it meant a more gentle treatment for > > > >him? > > > > > I haven't fully convinced him, but I am determined to stand my > > > >ground > > > > > on this. > > > > > > > > > > Please, if anyone can help me, either by directing me to medical > > > > > articles, websites or your own stories on this group, I would > >really > > > > > appreciate it! I am feeling very lost and alone, relatively > > > > > unsupported (emotionally) by my husband and am just looking for > >some > > > > > " been there " testimonials. Please feel free to email me > >privately > > > >if > > > > > you like, because misery sure loves company. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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