Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 and , I'm so sorry to hear that your son is going through this...especially at his age. I don't have any experience in this matter but I wanted to wish you all the best. Perhaps with our collective prayers, the tenotomy will be all that he needs to get him back on the right track. All the best, Daiga and Owen, 02/04/03 Unilateral LCF, FAB 14/24 P.S. - Just out of curiousity, at what age was your son released from the FAB? > > > We are in S.C. and have been treated with the Ponseti method since > 1999, when our first son was born with severe bilateral clubfeet. > The treatments were very effective and the feet were corrected in > the normal time, using the normal Ponseti means. About one year > ago, he began walking on his toes from time to time and continued to > do this more and more. Finally, at our last check up, he was > walking exclusively on his toes. The Ponseti surgeon says that this > is a clear relapse and needs to be addressed. We do agree, as our > son cannot continue to walk on his toes without significant damage. > Right now, it looks like he will have a heel cord release, but that > is not definite. More may be needed. > > Our question is has anyone on the list had a relapse this late in > the game. We understand whatever procedure is done, our son will be > in casts for some 5-6 weeks. We wanted to make contact with someone > who may have gone through this at this age to know what to expect. > Any response and encouragement would be greatly appreciated. > > and Driggers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Hi and , I'm so sorry that your son is having problems.. I have a daughter age 4 1/2, so I can relate.. I don't have any direct personal experience to help advise you, but here are some links to articles on relapses and how they are handled which may be of help.. from the " Ponseti Links " site (http://pages.ivillage.com/ponseti_links/): Text about Dr. Ponseti's 2001 article regarding relapses: http://groups.yahoo.com/group/nosurgery4clubfoot/message/13223 Another post on relapses, including info from Global Health booklet: http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/20810 I hope it might be helpful. Has your son's doctor talked about trying any casting? I know that often an ATTT (tendon transfer) is considered, if the foot is turning in, and perhaps a repeat tenotomy.. In the Ponseti method the least amount of surgery is always the aim. Are you content with the opinion and care that you have at this point? Do you know of Dr. Frick in Charlotte? He has a son himself born with clubfoot.. I have heard uniformly good things about him.. (I am in N.C.) if you should find yourself wanting another opinion, it could be well worth the drive up.. Let us know what happens, and I hope you get some good help and support here.. we're glad you posted.. and are concerned and eager to help, and Claire > > > We are in S.C. and have been treated with the Ponseti method since > 1999, when our first son was born with severe bilateral clubfeet. > The treatments were very effective and the feet were corrected in > the normal time, using the normal Ponseti means. About one year > ago, he began walking on his toes from time to time and continued to > do this more and more. Finally, at our last check up, he was > walking exclusively on his toes. The Ponseti surgeon says that this > is a clear relapse and needs to be addressed. We do agree, as our > son cannot continue to walk on his toes without significant damage. > Right now, it looks like he will have a heel cord release, but that > is not definite. More may be needed. > > Our question is has anyone on the list had a relapse this late in > the game. We understand whatever procedure is done, our son will be > in casts for some 5-6 weeks. We wanted to make contact with someone > who may have gone through this at this age to know what to expect. > Any response and encouragement would be greatly appreciated. > > and Driggers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Hi and , Our daughter Emma started relapsing at age three and had a tendon transfer (ATTT) on both feet in November of last year. It sounds like your son's relapse is different than hers as her whole foot was affected. It might help to get a second opinion from Dr. Ponseti. Emma has about 5° dorsiflexion on the left foot and 20° on the right. Drs. Ponseti and Morcuende said that even at 0° they would not perform a heel cord release on her but that could have just been her case. When your son is standing are his heels touching the floor? As for the time in casts, we gave Emma lots of attention. We played games, did crafts and went out to places like museums and pet stores. The pet store staff let Emma touch some of the animals that normally wouldn't be taken out during store hours. I hope this helps in some way. Best of luck to your son and please keep us updated. Dan 5 year old relapse We are in S.C. and have been treated with the Ponseti method since 1999, when our first son was born with severe bilateral clubfeet. The treatments were very effective and the feet were corrected in the normal time, using the normal Ponseti means. About one year ago, he began walking on his toes from time to time and continued to do this more and more. Finally, at our last check up, he was walking exclusively on his toes. The Ponseti surgeon says that this is a clear relapse and needs to be addressed. We do agree, as our son cannot continue to walk on his toes without significant damage. Right now, it looks like he will have a heel cord release, but that is not definite. More may be needed. Our question is has anyone on the list had a relapse this late in the game. We understand whatever procedure is done, our son will be in casts for some 5-6 weeks. We wanted to make contact with someone who may have gone through this at this age to know what to expect. Any response and encouragement would be greatly appreciated. and Driggers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 This is funny even though it's not - but talking about having an older baby/child in casts, you'll be amazed at how much the world will open up to you. When I had in his little wheel chair going places people were bending over backwards and jumping through hooops to accomodate him, it was awesome, almost embarassing at times, almost bringing me to tears at times from how much kindness we experienced from total strangers. Museums gave us a few private tours. discovered the handicap buttons that open doors automatically - he loved those!!! Great fun for a kid who is chair-bound. Pet stores, as you mentioned are great. Even shopping, trying on hats and funny things. It was like we were in some twilight zone - suddenly everything was different, obviously, yet everything was lighter, funnier, happier - I think probably because a) I was so thankful he had the treatment he needed, and we were experiencing some of the best in people that we often miss walking around on two legs. s. Our question is has anyone on the list had a relapse this late in the game. We understand whatever procedure is done, our son will be in casts for some 5-6 weeks. We wanted to make contact with someone who may have gone through this at this age to know what to expect. Any response and encouragement would be greatly appreciated. and Driggers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 This is funny even though it's not - but talking about having an older baby/child in casts, you'll be amazed at how much the world will open up to you. When I had in his little wheel chair going places people were bending over backwards and jumping through hooops to accomodate him, it was awesome, almost embarassing at times, almost bringing me to tears at times from how much kindness we experienced from total strangers. Museums gave us a few private tours. discovered the handicap buttons that open doors automatically - he loved those!!! Great fun for a kid who is chair-bound. Pet stores, as you mentioned are great. Even shopping, trying on hats and funny things. It was like we were in some twilight zone - suddenly everything was different, obviously, yet everything was lighter, funnier, happier - I think probably because a) I was so thankful he had the treatment he needed, and we were experiencing some of the best in people that we often miss walking around on two legs. s. Our question is has anyone on the list had a relapse this late in the game. We understand whatever procedure is done, our son will be in casts for some 5-6 weeks. We wanted to make contact with someone who may have gone through this at this age to know what to expect. Any response and encouragement would be greatly appreciated. and Driggers Quote Link to comment Share on other sites More sharing options...
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