Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Welcome Ruth! My baby had issues with her big toenail curling up at the end but this has resolved. Her big toenails are kind of a funny shape (as are her big toes) and they don't seem to get very long before you can see the white part. Hope that makes sense. In a month we will be reducing our brace hours so I am currently coming up with a plan on that. Carol and , bcf, 10-27-05, s 23/7 My son My son was born on 04 November 2005 with bilateral talipes. He started treatment at 10 days old in Musgrave Park Hospital in Belfast as we live in Northern Ireland. We are very lucky in that the hospital uses the Ponseti method as we would really have had no alternative if it hadn't been this. The talipes was not picked up during my pregnancy, so I have only been able to do all my research on the topic after was born. We have now reached the stage of reducing the hours from 23/24 and I have read with interest the messages that recommend that you don't reduce too quickly as our doctor has said that we can now go to just night time and nap time. I would appreciate any advice from more experienced parents and would also ask if anyone has had problems with their babies' toenails, particularly the big toe. My son is gorgeous & like everyone his dad & I want to do the best we can. I look forward to some good advice! Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Ruth! I am at the same point as you with my son Hayden. He is about to have his hours reduced from 23/7 to 12-14/7 and the group is advising against this. Our doctor would not have a problem with me keeping him in them longer, so that is probably what I will do. The only issue I have is that Hayden is a bit older and got into the shoes later and is now ready to be mobile. We have really early walkers in our family (9-10 months old) and I can see all of the indicators with Hayden that it is just on the horizon, so I don't want to restrict him too much. Also, because he was in casts for so long, he has trouble weight bearing and I need him to get going with that. Kori's mathematical methond of reducing the hours is an excellent idea and I will most likely investigate that myself. As well, Hayden has the funkiest toenails EVER! He had a lot of trouble with his casts because the big toenail would get squashed into the fat pad over his toes and then it would cut his flesh (see http://boyhamham.blogspot.com/2005/11/caffeine-and-ventolin.html), so I'm right there with ya! Let's see a picture of that georgeous boy! rdadej2 wrote: My son was born on 04 November 2005 with bilateral talipes. He started treatment at 10 days old in Musgrave Park Hospital in Belfast as we live in Northern Ireland. We are very lucky in that the hospital uses the Ponseti method as we would really have had no alternative if it hadn't been this. The talipes was not picked up during my pregnancy, so I have only been able to do all my research on the topic after was born. We have now reached the stage of reducing the hours from 23/24 and I have read with interest the messages that recommend that you don't reduce too quickly as our doctor has said that we can now go to just night time and nap time. I would appreciate any advice from more experienced parents and would also ask if anyone has had problems with their babies' toenails, particularly the big toe. My son is gorgeous & like everyone his dad & I want to do the best we can. I look forward to some good advice! Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Ruth. I'm so happy to hear that you were able to get the best care possible for your son. What kind of toenail problems are you referring to? My son was born a day before your little one with a left clubfoot. The toenails on that foot are a bit smaller and funkier than his right foot. The big toenail is short and wide and sticks up a bit. rdadej2 wrote: My son was born on 04 November 2005 with bilateral talipes. He started treatment at 10 days old in Musgrave Park Hospital in Belfast as we live in Northern Ireland. We are very lucky in that the hospital uses the Ponseti method as we would really have had no alternative if it hadn't been this. The talipes was not picked up during my pregnancy, so I have only been able to do all my research on the topic after was born. We have now reached the stage of reducing the hours from 23/24 and I have read with interest the messages that recommend that you don't reduce too quickly as our doctor has said that we can now go to just night time and nap time. I would appreciate any advice from more experienced parents and would also ask if anyone has had problems with their babies' toenails, particularly the big toe. My son is gorgeous & like everyone his dad & I want to do the best we can. I look forward to some good advice! Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi ! Thanks for your e-mail. I love your son's name. We thought of Hayden too, but finally decided on when we saw our wee man. 's toenails do point upwards and I thought it might be because his toes where squashed up in the casts. We had no problem with the casts and progressed through really well - 4 casts before the tenotomy, then 2 further casts for 2 weeks each. It's really hard to cut the toenails and of course daddy never volunteers! Of course it's not a major problem in the overall scheme of things. I'm a bit new to all of this, so no photo attached just yet. Good luck. Ruth My son was born on 04 November 2005 with bilateral > talipes. He started treatment at 10 days old in Musgrave Park > Hospital in Belfast as we live in Northern Ireland. We are very > lucky in that the hospital uses the Ponseti method as we would > really have had no alternative if it hadn't been this. The talipes > was not picked up during my pregnancy, so I have only been able to > do all my research on the topic after was born. We have > now reached the stage of reducing the hours from 23/24 and I have > read with interest the messages that recommend that you don't reduce > too quickly as our doctor has said that we can now go to just night > time and nap time. > > I would appreciate any advice from more experienced parents and > would also ask if anyone has had problems with their babies' > toenails, particularly the big toe. > > My son is gorgeous & like everyone his dad & I want to do the best > we can. > > I look forward to some good advice! > > Ruth > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Ruth, Welcome to the group . Glad to hear that you were able to find Ponseti treatment for your son and that it is going so well! As for the toe thing, many kiddo's here have funny lookin toes. We (as well as most parents methinks) have been told that they will straighten out over time and our daughters are better already. The big toes still curl upwards and her toenails are weapons lol, but it is improving. A new list was started by one of the mom's here (CFPics) that supports pics as this site dosen't so that we can all share pics of our kids feet and sweet faces. There is a pic of graces toes under the photo's section (file name 'toes')on this site if you would like to join and take a look and share some pics of . Here is the link: http://health.groups.yahoo.com/group/CFPics/ There is a short survery that needs to be filled out first and Kori (the list owner) or one of the other moderators should approve you right away. Glad to have you on board! & Grace 20mos urcf FAB 13hrs > > My son was born on 04 November 2005 with bilateral > talipes. He started treatment at 10 days old in Musgrave Park > Hospital in Belfast as we live in Northern Ireland. We are very > lucky in that the hospital uses the Ponseti method as we would > really have had no alternative if it hadn't been this. The talipes > was not picked up during my pregnancy, so I have only been able to > do all my research on the topic after was born. We have > now reached the stage of reducing the hours from 23/24 and I have > read with interest the messages that recommend that you don't reduce > too quickly as our doctor has said that we can now go to just night > time and nap time. > > I would appreciate any advice from more experienced parents and > would also ask if anyone has had problems with their babies' > toenails, particularly the big toe. > > My son is gorgeous & like everyone his dad & I want to do the best > we can. > > I look forward to some good advice! > > Ruth > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Ruth Good to see you found this site. Our son Josh was born 4 years ago with bilateral talipes and we live in Northern Ireland. Unfortunately for us at that time there were no trained Ponsetti practitioners within Northern Ireland. A couple of consultants were considering it at the time, Duffy (RVH) and Mr Laverick (Ulster) but had never actually treated any kids. We took the decision to go and see Gavin De Kiewiet (Sunderland) who was one of only two Consultants in UK recommended by Dr Ponsetti on his web site. We travelled weekly for castings to Sunderland for 4 months, he then had a tenotomy, needed an Achilles lengthening procedure and was wearing boots and bar for 3 years. He is now out of the boots and bar and we now travel for reviews every 3-6 months. Josh is doing very well and it is unlikely you could tell that there was ever anything wrong with his feet. We were fortunate enough to attend a Ponsetti Conference in Manchester last year were Fred Dietz (Iowa) was speaking, he examined Josh's feet and was very encouraging in his assessment of how Josh was doing. I would say it was probably nearer 10 months or so before we had Josh out most of the day. We started off letting him out of the brace for 1 or 2 hours, then he only wore it at nights and sleeps when he was commencing to try and walk. If I could give you any advice it would be to ensure that the bar is the correct length as we had some problems at the beginning but once we had the bar at the correct length Josh was more than hapy and didn't cause many problems even when crawling around. He did have really strong tummy muscles and big strong legs due to the casts and bar. More than happy to answer any other questions, we know how hard it can be. Philip & a-Anne My son My son was born on 04 November 2005 with bilateral talipes. He started treatment at 10 days old in Musgrave Park Hospital in Belfast as we live in Northern Ireland. We are very lucky in that the hospital uses the Ponseti method as we would really have had no alternative if it hadn't been this. The talipes was not picked up during my pregnancy, so I have only been able to do all my research on the topic after was born. We have now reached the stage of reducing the hours from 23/24 and I have read with interest the messages that recommend that you don't reduce too quickly as our doctor has said that we can now go to just night time and nap time. I would appreciate any advice from more experienced parents and would also ask if anyone has had problems with their babies' toenails, particularly the big toe. My son is gorgeous & like everyone his dad & I want to do the best we can. I look forward to some good advice! Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Many thanks for your message Philip. Duffy is now in Musgrave and is our consultant. She is very good and the care has been great. You know how it is in the beginning when you feel totally overwhelmed with the news that you're talking years to " fix " instead of the quick fix that we're all used to nowadays. But we are so lucky that we do have the Ponsetti method here now and I believe Miss Duffy is also training some docs in Dublin. You both were so brave to head off to Sunderland, but I'm sure it has been well worth it. I got the most recent newsletter from the Steps charity the other day, I don't know if you know about it, and there was a story on the front about a dad doing the New York marathon for Steps. His son was born in 1992 with bilateral talipes and has had 7 operations to correct his feet. We were very lucky with . He had 4 sets of plaster casts, then the bilateral tenotomy and 2 sets of further casts for 2 weeks each and then into the boots and bar on 10 January. He has had no problems tolerating either the casts or the boots and bar. I'm just concerned about reducing the hours and think we will do as you did and go down gradually. The mums on this site would seem to back up this theory too. It's good to hear from people at all different stages. It makes us feel that the end is in sight. Is there some kind of group in Northern Ireland? Thanks again and good luck to Josh and your family. Ruth > > Ruth > > Good to see you found this site. Our son Josh was born 4 years ago with > bilateral talipes and we live in Northern Ireland. Unfortunately for us at > that time there were no trained Ponsetti practitioners within Northern > Ireland. A couple of consultants were considering it at the time, > Duffy (RVH) and Mr Laverick (Ulster) but had never actually treated any > kids. We took the decision to go and see Gavin De Kiewiet (Sunderland) who > was one of only two Consultants in UK recommended by Dr Ponsetti on his web > site. We travelled weekly for castings to Sunderland for 4 months, he then > had a tenotomy, needed an Achilles lengthening procedure and was wearing > boots and bar for 3 years. He is now out of the boots and bar and we now > travel for reviews every 3-6 months. Josh is doing very well and it is > unlikely you could tell that there was ever anything wrong with his feet. > We were fortunate enough to attend a Ponsetti Conference in Manchester last > year were Fred Dietz (Iowa) was speaking, he examined Josh's feet and was > very encouraging in his assessment of how Josh was doing. > > I would say it was probably nearer 10 months or so before we had Josh out > most of the day. We started off letting him out of the brace for 1 or 2 > hours, then he only wore it at nights and sleeps when he was commencing to > try and walk. If I could give you any advice it would be to ensure that the > bar is the correct length as we had some problems at the beginning but once > we had the bar at the correct length Josh was more than hapy and didn't > cause many problems even when crawling around. He did have really strong > tummy muscles and big strong legs due to the casts and bar. > > More than happy to answer any other questions, we know how hard it can be. > > Philip & a-Anne > > My son > > My son was born on 04 November 2005 with bilateral > talipes. He started treatment at 10 days old in Musgrave Park > Hospital in Belfast as we live in Northern Ireland. We are very > lucky in that the hospital uses the Ponseti method as we would > really have had no alternative if it hadn't been this. The talipes > was not picked up during my pregnancy, so I have only been able to > do all my research on the topic after was born. We have > now reached the stage of reducing the hours from 23/24 and I have > read with interest the messages that recommend that you don't reduce > too quickly as our doctor has said that we can now go to just night > time and nap time. > > I would appreciate any advice from more experienced parents and > would also ask if anyone has had problems with their babies' > toenails, particularly the big toe. > > My son is gorgeous & like everyone his dad & I want to do the best > we can. > > I look forward to some good advice! > > Ruth > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Ruth No official group but we have some friends who we actually met in Sunderland who had also travelled to have treatment and with whom we keep contact. My wife says if you'd like to meet up for a coffee some time she'll bring Josh along and you's can have a chat - we live in Bangor. Duffy visited Gavin De Kiewiet in Sunderland to watch his clinic when we were being treated. I am glad that things have now progressed to effective Ponsetti treatment now taking place here. At the time did tell me that she thought the method was the best way forward but she said it was too early to say how things were going in Northern Ireland. I'm sure you can appreciate we wanted what was best for our son and at that time the best options were in England. I am aware of the Steps website and there are plenty of parents in NI who also have had go through quite traumatic surgical routes. We were very fortunate to have found out about the Ponsetti method prior to Josh's birth and make the appropriate arrangements to proceed as soon as he was born. Philip My son > > My son was born on 04 November 2005 with bilateral > talipes. He started treatment at 10 days old in Musgrave Park > Hospital in Belfast as we live in Northern Ireland. We are very > lucky in that the hospital uses the Ponseti method as we would > really have had no alternative if it hadn't been this. The talipes > was not picked up during my pregnancy, so I have only been able to > do all my research on the topic after was born. We have > now reached the stage of reducing the hours from 23/24 and I have > read with interest the messages that recommend that you don't reduce > too quickly as our doctor has said that we can now go to just night > time and nap time. > > I would appreciate any advice from more experienced parents and > would also ask if anyone has had problems with their babies' > toenails, particularly the big toe. > > My son is gorgeous & like everyone his dad & I want to do the best > we can. > > I look forward to some good advice! > > Ruth > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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