Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Patti, You make me laugh! My husband (no GD) does the same thing all the time. I find him staring blankly in the refrigerator, when I know he's looking for a plate to put his sandwich on... While I think we can blame this disease for a lot, I sometimes wonder if it's not become a bit of a catch-all. Terry > > Reply-To: graves_support > Date: Wed, 13 Mar 2002 10:20:10 -0500 (EST) > To: graves_support > Subject: RE: Just Diagnosed > > One time last week I was putting the milk away and opened the cabinet > where I store our glasses & mugs instead of the fridge. Then I opened the > freezer to put the cereal away. DUH. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Patti, You make me laugh! My husband (no GD) does the same thing all the time. I find him staring blankly in the refrigerator, when I know he's looking for a plate to put his sandwich on... While I think we can blame this disease for a lot, I sometimes wonder if it's not become a bit of a catch-all. Terry > > Reply-To: graves_support > Date: Wed, 13 Mar 2002 10:20:10 -0500 (EST) > To: graves_support > Subject: RE: Just Diagnosed > > One time last week I was putting the milk away and opened the cabinet > where I store our glasses & mugs instead of the fridge. Then I opened the > freezer to put the cereal away. DUH. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Terry, What you say is a good point. I now find myself continually questioning myself on how I feel. Is this part of the Graves Disease or is it something else ? I have always had headaches, as does all my family... now I am thinking perhaps this was Graves all along. But then maybe they were because of stress like all my doctors have said. Is it or isn't it.....? Who knows. I am feeling tired... is this your every day worn out ? or is it because I am going hypo ? I am feeling hungry and shaky... is this because I am hyper ? or is it merely because I haven't eaten lunch ? This whole disease thing makes you look at everything in a totally different light. Katy. RE: Just Diagnosed > > One time last week I was putting the milk away and opened the cabinet > where I store our glasses & mugs instead of the fridge. Then I opened the > freezer to put the cereal away. DUH. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Peggy, I see you have gotten lots of good responses. The only thing I can add, is that I have seen more people here lately, started on the smaller dose. I find it very interesting. It seems to me, the theory is that this will not put you quickly into hypo hell, and cause the horrible symptoms that you then have to wait until your dose is changed after many phone calls and much begging on your part, then waiting for the symptoms to go away...after you dose is reduced. This lower dose would greatly reduce your chances of allergic reactions to the drug. Personally I find my mental abilities DIRECTLY correspond to my thyroid levels. Up and down. When I can stay in the middle, I actually know where I am going as I drive down the road, or why I walked to this room. :-) Sounds like you are off to a good start. -Pam- who uses penmanship as a good test of my hyper / hypo state...(thanks Terry) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Peggy, I see you have gotten lots of good responses. The only thing I can add, is that I have seen more people here lately, started on the smaller dose. I find it very interesting. It seems to me, the theory is that this will not put you quickly into hypo hell, and cause the horrible symptoms that you then have to wait until your dose is changed after many phone calls and much begging on your part, then waiting for the symptoms to go away...after you dose is reduced. This lower dose would greatly reduce your chances of allergic reactions to the drug. Personally I find my mental abilities DIRECTLY correspond to my thyroid levels. Up and down. When I can stay in the middle, I actually know where I am going as I drive down the road, or why I walked to this room. :-) Sounds like you are off to a good start. -Pam- who uses penmanship as a good test of my hyper / hypo state...(thanks Terry) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Peggy, I see you have gotten lots of good responses. The only thing I can add, is that I have seen more people here lately, started on the smaller dose. I find it very interesting. It seems to me, the theory is that this will not put you quickly into hypo hell, and cause the horrible symptoms that you then have to wait until your dose is changed after many phone calls and much begging on your part, then waiting for the symptoms to go away...after you dose is reduced. This lower dose would greatly reduce your chances of allergic reactions to the drug. Personally I find my mental abilities DIRECTLY correspond to my thyroid levels. Up and down. When I can stay in the middle, I actually know where I am going as I drive down the road, or why I walked to this room. :-) Sounds like you are off to a good start. -Pam- who uses penmanship as a good test of my hyper / hypo state...(thanks Terry) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Peggy - Welcome to the group! Everyone's already given you such good advice, I don't have much to add! As for dumb things, welcome to the world of GD! My memory seemed to go downhill so fast, I thought I was getting Alzheimer's. Sorry you've got to have this during midterms - good luck with them! Another common thing - go into another room to get something and forget what it was. Go to grocery store and forget the one important thing you went there for in the first place. Sigh, it does get better as your thyroid levels normalize, but it seems so long for the brain to regain normal function! Just Diagnosed >Hello. I'm new to the group. I'm 33, and was diagnosed about 2 weeks >ago with Graves. I'm now on Tapezole (10mg twice a day) and Nadalol >(20mg twice a day). I also am having some eye problems and will see an >opthamologist about that next week. I'm glad to know that there's a >reason for the crappy way I've been feeling, but I'm still saddened by >the prospect of being on some sort of drug therapy for the rest of my >life. > >I'm in school now and right in the middle of midterms, so I'm really >frustrated by all of this. There's never a good time to be sick, but >it's really affecting my schoolwork. I can tell the Tapezole dosage >isn't quite right for me, becuase I'm still hot and irritable and not >sleeping well, but my doctor won't increase the dosage until I've been >on it for a month. Is this the way this usually works? > >But I think the thing I'm most worried about at the moment is this: >I'm doing some really dumb things - forgetting to turn the stove on >when I'm trying to cook, or going out the front door when I mean to go >to my bedroom. I'm also noticing a change in my writing - sometimes >I'm thinking one word, but I write something completely different, or >spell something entirely wrong when I've never really had problems >spelling. I don't think this is a result of the Tapezole, but is it >normal for Graves? I asked my doctor about this and he said confusion >is common, but I wouldn't really call this confusion. Another >doctor I talked to said that I might just be having lapses in >concentration, but that doesn't feel true either. I'm thinking >clearly, but not always executing what I'm thinking. >I can only imagine the intersting things I'll come up with on my >written exams... >Anyone have any insight? >Thanks so much! >Peggy > > > >------------------------------------- >The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list does not have the endorsement of >the listowner. I have no input as to what ads are attached to emails. >--------------------------------------------------------------------------- ----------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Peggy - Welcome to the group! Everyone's already given you such good advice, I don't have much to add! As for dumb things, welcome to the world of GD! My memory seemed to go downhill so fast, I thought I was getting Alzheimer's. Sorry you've got to have this during midterms - good luck with them! Another common thing - go into another room to get something and forget what it was. Go to grocery store and forget the one important thing you went there for in the first place. Sigh, it does get better as your thyroid levels normalize, but it seems so long for the brain to regain normal function! Just Diagnosed >Hello. I'm new to the group. I'm 33, and was diagnosed about 2 weeks >ago with Graves. I'm now on Tapezole (10mg twice a day) and Nadalol >(20mg twice a day). I also am having some eye problems and will see an >opthamologist about that next week. I'm glad to know that there's a >reason for the crappy way I've been feeling, but I'm still saddened by >the prospect of being on some sort of drug therapy for the rest of my >life. > >I'm in school now and right in the middle of midterms, so I'm really >frustrated by all of this. There's never a good time to be sick, but >it's really affecting my schoolwork. I can tell the Tapezole dosage >isn't quite right for me, becuase I'm still hot and irritable and not >sleeping well, but my doctor won't increase the dosage until I've been >on it for a month. Is this the way this usually works? > >But I think the thing I'm most worried about at the moment is this: >I'm doing some really dumb things - forgetting to turn the stove on >when I'm trying to cook, or going out the front door when I mean to go >to my bedroom. I'm also noticing a change in my writing - sometimes >I'm thinking one word, but I write something completely different, or >spell something entirely wrong when I've never really had problems >spelling. I don't think this is a result of the Tapezole, but is it >normal for Graves? I asked my doctor about this and he said confusion >is common, but I wouldn't really call this confusion. Another >doctor I talked to said that I might just be having lapses in >concentration, but that doesn't feel true either. I'm thinking >clearly, but not always executing what I'm thinking. >I can only imagine the intersting things I'll come up with on my >written exams... >Anyone have any insight? >Thanks so much! >Peggy > > > >------------------------------------- >The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list does not have the endorsement of >the listowner. I have no input as to what ads are attached to emails. >--------------------------------------------------------------------------- ----------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hey Peggy, I just have to add to this! At 53 I just finished my BA and did so in the midst of two RAI treatments and a negligent doctor. Nontraditional students have something to prove anyway, and we are already type A's by nature, or at least a great many of us are. My major was Cognitive Science and we deal with how to remember stuff. Or rather how the brain can be induced to remember. Rehearsal is one techinique as well as re-creation of the conditions under which you learned the material. Associations work well as well. If you are interested I'll try to get you some stuff chapter and verse. Of course you might also be left handed, which happens more frequently with people who have autoimmune problems (or vice versa) which would impact the style you should use when trying to learn. Personally, I was the index card queen of the Universe. Still am. Using all those leftover index cards to prepare for the GRE. Laurel Just Diagnosed >Hello. I'm new to the group. I'm 33, and was diagnosed about 2 weeks >ago with Graves. I'm now on Tapezole (10mg twice a day) and Nadalol >(20mg twice a day). I also am having some eye problems and will see an >opthamologist about that next week. I'm glad to know that there's a >reason for the crappy way I've been feeling, but I'm still saddened by >the prospect of being on some sort of drug therapy for the rest of my >life. > >I'm in school now and right in the middle of midterms, so I'm really >frustrated by all of this. There's never a good time to be sick, but >it's really affecting my schoolwork. I can tell the Tapezole dosage >isn't quite right for me, becuase I'm still hot and irritable and not >sleeping well, but my doctor won't increase the dosage until I've been >on it for a month. Is this the way this usually works? > >But I think the thing I'm most worried about at the moment is this: >I'm doing some really dumb things - forgetting to turn the stove on >when I'm trying to cook, or going out the front door when I mean to go >to my bedroom. I'm also noticing a change in my writing - sometimes >I'm thinking one word, but I write something completely different, or >spell something entirely wrong when I've never really had problems >spelling. I don't think this is a result of the Tapezole, but is it >normal for Graves? I asked my doctor about this and he said confusion >is common, but I wouldn't really call this confusion. Another >doctor I talked to said that I might just be having lapses in >concentration, but that doesn't feel true either. I'm thinking >clearly, but not always executing what I'm thinking. >I can only imagine the intersting things I'll come up with on my >written exams... >Anyone have any insight? >Thanks so much! >Peggy > > > >------------------------------------- >The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list does not have the endorsement of >the listowner. I have no input as to what ads are attached to emails. >--------------------------------------------------------------------------- ----------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hey Peggy, I just have to add to this! At 53 I just finished my BA and did so in the midst of two RAI treatments and a negligent doctor. Nontraditional students have something to prove anyway, and we are already type A's by nature, or at least a great many of us are. My major was Cognitive Science and we deal with how to remember stuff. Or rather how the brain can be induced to remember. Rehearsal is one techinique as well as re-creation of the conditions under which you learned the material. Associations work well as well. If you are interested I'll try to get you some stuff chapter and verse. Of course you might also be left handed, which happens more frequently with people who have autoimmune problems (or vice versa) which would impact the style you should use when trying to learn. Personally, I was the index card queen of the Universe. Still am. Using all those leftover index cards to prepare for the GRE. Laurel Just Diagnosed >Hello. I'm new to the group. I'm 33, and was diagnosed about 2 weeks >ago with Graves. I'm now on Tapezole (10mg twice a day) and Nadalol >(20mg twice a day). I also am having some eye problems and will see an >opthamologist about that next week. I'm glad to know that there's a >reason for the crappy way I've been feeling, but I'm still saddened by >the prospect of being on some sort of drug therapy for the rest of my >life. > >I'm in school now and right in the middle of midterms, so I'm really >frustrated by all of this. There's never a good time to be sick, but >it's really affecting my schoolwork. I can tell the Tapezole dosage >isn't quite right for me, becuase I'm still hot and irritable and not >sleeping well, but my doctor won't increase the dosage until I've been >on it for a month. Is this the way this usually works? > >But I think the thing I'm most worried about at the moment is this: >I'm doing some really dumb things - forgetting to turn the stove on >when I'm trying to cook, or going out the front door when I mean to go >to my bedroom. I'm also noticing a change in my writing - sometimes >I'm thinking one word, but I write something completely different, or >spell something entirely wrong when I've never really had problems >spelling. I don't think this is a result of the Tapezole, but is it >normal for Graves? I asked my doctor about this and he said confusion >is common, but I wouldn't really call this confusion. Another >doctor I talked to said that I might just be having lapses in >concentration, but that doesn't feel true either. I'm thinking >clearly, but not always executing what I'm thinking. >I can only imagine the intersting things I'll come up with on my >written exams... >Anyone have any insight? >Thanks so much! >Peggy > > > >------------------------------------- >The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list does not have the endorsement of >the listowner. I have no input as to what ads are attached to emails. >--------------------------------------------------------------------------- ----------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hey Peggy, I just have to add to this! At 53 I just finished my BA and did so in the midst of two RAI treatments and a negligent doctor. Nontraditional students have something to prove anyway, and we are already type A's by nature, or at least a great many of us are. My major was Cognitive Science and we deal with how to remember stuff. Or rather how the brain can be induced to remember. Rehearsal is one techinique as well as re-creation of the conditions under which you learned the material. Associations work well as well. If you are interested I'll try to get you some stuff chapter and verse. Of course you might also be left handed, which happens more frequently with people who have autoimmune problems (or vice versa) which would impact the style you should use when trying to learn. Personally, I was the index card queen of the Universe. Still am. Using all those leftover index cards to prepare for the GRE. Laurel Just Diagnosed >Hello. I'm new to the group. I'm 33, and was diagnosed about 2 weeks >ago with Graves. I'm now on Tapezole (10mg twice a day) and Nadalol >(20mg twice a day). I also am having some eye problems and will see an >opthamologist about that next week. I'm glad to know that there's a >reason for the crappy way I've been feeling, but I'm still saddened by >the prospect of being on some sort of drug therapy for the rest of my >life. > >I'm in school now and right in the middle of midterms, so I'm really >frustrated by all of this. There's never a good time to be sick, but >it's really affecting my schoolwork. I can tell the Tapezole dosage >isn't quite right for me, becuase I'm still hot and irritable and not >sleeping well, but my doctor won't increase the dosage until I've been >on it for a month. Is this the way this usually works? > >But I think the thing I'm most worried about at the moment is this: >I'm doing some really dumb things - forgetting to turn the stove on >when I'm trying to cook, or going out the front door when I mean to go >to my bedroom. I'm also noticing a change in my writing - sometimes >I'm thinking one word, but I write something completely different, or >spell something entirely wrong when I've never really had problems >spelling. I don't think this is a result of the Tapezole, but is it >normal for Graves? I asked my doctor about this and he said confusion >is common, but I wouldn't really call this confusion. Another >doctor I talked to said that I might just be having lapses in >concentration, but that doesn't feel true either. I'm thinking >clearly, but not always executing what I'm thinking. >I can only imagine the intersting things I'll come up with on my >written exams... >Anyone have any insight? >Thanks so much! >Peggy > > > >------------------------------------- >The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list does not have the endorsement of >the listowner. I have no input as to what ads are attached to emails. >--------------------------------------------------------------------------- ----------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 Hello and welcome. My daughter was born in october with bilateral clubbed feet. I was told at my 16 week and 25 week ultrasound. I was very glad that they found it in the ultrasound so i could learn about it and set up everything before she was born. I was upset but got over it when i found that she is a perfectly healthy baby with nothing else wrong with her. She started treatment 6 days after she was born and we had weekly castings. Now she is on her last set of casts and will be getting her DBB next week. I am glad that we didn't do the surgery. I have talked to many people who had clubbed feet and had surgery done and they have had problems ever since. One lady told me she had over 10 surgeries and her feet still aren't right and she is in such terrible pain. She commended me for not doing the surgery and doing the ponsetti method instead. It has been hard especially the tendonotomy, but it is well worth it because i know she will walk. I highly recommend the ponsetti method and i am sorry i can't help you with finding someone over there, i only know the united states doctors , good luck in finding a doctor, and please email dr.ponsetti personally he is a great man and will email you back right away. > Hi everyone, > > Our second child has just been diagnosed with bi lateral talipes > (clubfoot)at the 23 weeks scan. Having got over (partly) the initial > shock I have been researching the various treatment methods and am > very interested in the Ponseti method. Is anyone aware of doctors in > the United Kingdom practicing the method? Is the method to be > recommended over surgery? Are the results as good? Is it > necessary/possible to travel to Iowa for treatment? > > Any advice would be greatly appreciated. > > Kindest Regards > > Ian and Natasha Bell, London, U.K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2002 Report Share Posted November 26, 2002 Hi Ian & Natasha Our son Ben was born 19/11/01 with uni-lateral talipes. Looking at the replies to your initial posting I would imagine that you have progressed forward and will probably made your decision on the treatment you will push for when your child is born. In answer to your question specifically on the Ponseti technique in the UK, we currently travel from Glasgow to Sunderland for Ben's treatment with Gavin di Kiewiet. I would strongly recommend Mr di Kiewiet to anyone who's child has talipes. He is a very caring individual and is very open and willing to discuss all aspect of the technique. We originally attended a clinic at our local hospital who were trying to follow the Ponseti technique. I believe this only prolonged our treatment and probably did more harm than good. My advice, if you choose to have your child treated by a Doctor practising the Ponseti method, is make sure that the Doctor is one of the those listed or recommended by Dr Ponseti's office. Best wishes Tom, Corinne & Ben -- In nosurgery4clubfoot@y..., " ianb712000 " <ian.bell@e...> wrote: > Hi everyone, > > Our second child has just been diagnosed with bi lateral talipes > (clubfoot)at the 23 weeks scan. Having got over (partly) the initial > shock I have been researching the various treatment methods and am > very interested in the Ponseti method. Is anyone aware of doctors in > the United Kingdom practicing the method? Is the method to be > recommended over surgery? Are the results as good? Is it > necessary/possible to travel to Iowa for treatment? > > Any advice would be greatly appreciated. > > Kindest Regards > > Ian and Natasha Bell, London, U.K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2002 Report Share Posted November 26, 2002 Hi Ian & Natasha Our son Ben was born 19/11/01 with uni-lateral talipes. Looking at the replies to your initial posting I would imagine that you have progressed forward and will probably made your decision on the treatment you will push for when your child is born. In answer to your question specifically on the Ponseti technique in the UK, we currently travel from Glasgow to Sunderland for Ben's treatment with Gavin di Kiewiet. I would strongly recommend Mr di Kiewiet to anyone who's child has talipes. He is a very caring individual and is very open and willing to discuss all aspect of the technique. We originally attended a clinic at our local hospital who were trying to follow the Ponseti technique. I believe this only prolonged our treatment and probably did more harm than good. My advice, if you choose to have your child treated by a Doctor practising the Ponseti method, is make sure that the Doctor is one of the those listed or recommended by Dr Ponseti's office. Best wishes Tom, Corinne & Ben -- In nosurgery4clubfoot@y..., " ianb712000 " <ian.bell@e...> wrote: > Hi everyone, > > Our second child has just been diagnosed with bi lateral talipes > (clubfoot)at the 23 weeks scan. Having got over (partly) the initial > shock I have been researching the various treatment methods and am > very interested in the Ponseti method. Is anyone aware of doctors in > the United Kingdom practicing the method? Is the method to be > recommended over surgery? Are the results as good? Is it > necessary/possible to travel to Iowa for treatment? > > Any advice would be greatly appreciated. > > Kindest Regards > > Ian and Natasha Bell, London, U.K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2002 Report Share Posted November 26, 2002 Hi Ian & Natasha Our son Ben was born 19/11/01 with uni-lateral talipes. Looking at the replies to your initial posting I would imagine that you have progressed forward and will probably made your decision on the treatment you will push for when your child is born. In answer to your question specifically on the Ponseti technique in the UK, we currently travel from Glasgow to Sunderland for Ben's treatment with Gavin di Kiewiet. I would strongly recommend Mr di Kiewiet to anyone who's child has talipes. He is a very caring individual and is very open and willing to discuss all aspect of the technique. We originally attended a clinic at our local hospital who were trying to follow the Ponseti technique. I believe this only prolonged our treatment and probably did more harm than good. My advice, if you choose to have your child treated by a Doctor practising the Ponseti method, is make sure that the Doctor is one of the those listed or recommended by Dr Ponseti's office. Best wishes Tom, Corinne & Ben -- In nosurgery4clubfoot@y..., " ianb712000 " <ian.bell@e...> wrote: > Hi everyone, > > Our second child has just been diagnosed with bi lateral talipes > (clubfoot)at the 23 weeks scan. Having got over (partly) the initial > shock I have been researching the various treatment methods and am > very interested in the Ponseti method. Is anyone aware of doctors in > the United Kingdom practicing the method? Is the method to be > recommended over surgery? Are the results as good? Is it > necessary/possible to travel to Iowa for treatment? > > Any advice would be greatly appreciated. > > Kindest Regards > > Ian and Natasha Bell, London, U.K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 Ian and Natasha Sorry for not replying sooner but I have just returned from holiday. Our second child was also diagnosed with bilateral talipes following a 20 week scan, it was quite a shock as we already had a perfectly healthy daughter and neither my wife nor I had any experience of the condition. After months of research and questioning we decided to opt for the Ponseti method of treatment and to travel to England for treatment with Mr De Kiewiet ( we live in Northern Ireland and received very little help from the health professionals here). It was initially very difficult as we had to travel to Sunderland weekly for castings but in my view it has been worth it. We now travel with Josh very 3 months for checkups ( he is now 7 months) and he is wearing a DB bar and boots 23 hours a day. I can only reiterate everything that Tom has already posted re Gavin De Kiewiet, he has been understanding and very, very helpful. He was willing to discuss the various issues with us by phone before we were referred or Josh was born so you may like to give his secretary a ring. There are various parents on this group who have followed a similar path and at least one from the London area that I know of. If you have any other questions please do not hesitate to write back as we have all been through what you are now facing. Philip, a-Anne and Josh Just diagnosed > Hi everyone, > > Our second child has just been diagnosed with bi lateral talipes > (clubfoot)at the 23 weeks scan. Having got over (partly) the initial > shock I have been researching the various treatment methods and am > very interested in the Ponseti method. Is anyone aware of doctors in > the United Kingdom practicing the method? Is the method to be > recommended over surgery? Are the results as good? Is it > necessary/possible to travel to Iowa for treatment? > > Any advice would be greatly appreciated. > > Kindest Regards > > Ian and Natasha Bell, London, U.K. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 Ian and Natasha Sorry for not replying sooner but I have just returned from holiday. Our second child was also diagnosed with bilateral talipes following a 20 week scan, it was quite a shock as we already had a perfectly healthy daughter and neither my wife nor I had any experience of the condition. After months of research and questioning we decided to opt for the Ponseti method of treatment and to travel to England for treatment with Mr De Kiewiet ( we live in Northern Ireland and received very little help from the health professionals here). It was initially very difficult as we had to travel to Sunderland weekly for castings but in my view it has been worth it. We now travel with Josh very 3 months for checkups ( he is now 7 months) and he is wearing a DB bar and boots 23 hours a day. I can only reiterate everything that Tom has already posted re Gavin De Kiewiet, he has been understanding and very, very helpful. He was willing to discuss the various issues with us by phone before we were referred or Josh was born so you may like to give his secretary a ring. There are various parents on this group who have followed a similar path and at least one from the London area that I know of. If you have any other questions please do not hesitate to write back as we have all been through what you are now facing. Philip, a-Anne and Josh Just diagnosed > Hi everyone, > > Our second child has just been diagnosed with bi lateral talipes > (clubfoot)at the 23 weeks scan. Having got over (partly) the initial > shock I have been researching the various treatment methods and am > very interested in the Ponseti method. Is anyone aware of doctors in > the United Kingdom practicing the method? Is the method to be > recommended over surgery? Are the results as good? Is it > necessary/possible to travel to Iowa for treatment? > > Any advice would be greatly appreciated. > > Kindest Regards > > Ian and Natasha Bell, London, U.K. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 Ian and Natasha Sorry for not replying sooner but I have just returned from holiday. Our second child was also diagnosed with bilateral talipes following a 20 week scan, it was quite a shock as we already had a perfectly healthy daughter and neither my wife nor I had any experience of the condition. After months of research and questioning we decided to opt for the Ponseti method of treatment and to travel to England for treatment with Mr De Kiewiet ( we live in Northern Ireland and received very little help from the health professionals here). It was initially very difficult as we had to travel to Sunderland weekly for castings but in my view it has been worth it. We now travel with Josh very 3 months for checkups ( he is now 7 months) and he is wearing a DB bar and boots 23 hours a day. I can only reiterate everything that Tom has already posted re Gavin De Kiewiet, he has been understanding and very, very helpful. He was willing to discuss the various issues with us by phone before we were referred or Josh was born so you may like to give his secretary a ring. There are various parents on this group who have followed a similar path and at least one from the London area that I know of. If you have any other questions please do not hesitate to write back as we have all been through what you are now facing. Philip, a-Anne and Josh Just diagnosed > Hi everyone, > > Our second child has just been diagnosed with bi lateral talipes > (clubfoot)at the 23 weeks scan. Having got over (partly) the initial > shock I have been researching the various treatment methods and am > very interested in the Ponseti method. Is anyone aware of doctors in > the United Kingdom practicing the method? Is the method to be > recommended over surgery? Are the results as good? Is it > necessary/possible to travel to Iowa for treatment? > > Any advice would be greatly appreciated. > > Kindest Regards > > Ian and Natasha Bell, London, U.K. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 so it is feb. 7 and i got diagnosed this morning at 10:30. i am 37 year old living in salt lake city and i am realing. i thought i had just injured my acetabular labrum or some such thing, and this doctor comes in after x-rays and says, " osteoarthritis. you need a new hip. or we could do this other reshaping of my pelvis operation that sounds horrific. " i said let me think about this. he did not even mention resufracing. i do not know how far along i am really. i am going to go see another doctor next week. try and find one who specializes in oa (dag! i am already talking in the language). this one was a trauma surgeon. so i spent the day google searching and learning what you can from the net. my question is, i have bcbs, i am in utah. am i intercoursed as one would say. i have not seen a doctor on their dime yet, just had some x-rays and a consultation. my pain level is getting up there. i cannot climb anymore, and it has been my passion for twenty years. i am a blue collar worker. i make my living on my back. i think ican hold on for another year before this becomes dibilitating i.e. it takes more than a half hour to get out of bed in the morning. i know i have to make a career change, but that does not frighten me as much as not being covered on insurance. i am looking for pointers on how to navigate this mess. also, how much does this doctor in belgium cost? i have some savings, and if what i read is good and aplicable for my situation, this may be the route for me. bob e-mail @ beeohbe200@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Bob: The hospital and surgeon fees in Belgium are about $10,000 US (then there is airfare and whatever time you spend at the Holiday Inn) It is a complete bargain if you have pay yourself. Pamela LBHR De Smet October 23, 02 > so it is feb. 7 and i got diagnosed this morning at 10:30. i am 37 > year old living in salt lake city and i am realing. i thought i had > just injured my acetabular labrum or some such thing, and this doctor > comes in after x-rays and says, " osteoarthritis. you need a new > hip. or we could do this other reshaping of my pelvis operation that > sounds horrific. " i said let me think about this. he did not even > mention resufracing. i do not know how far along i am really. i am > going to go see another doctor next week. try and find one who > specializes in oa (dag! i am already talking in the language). this > one was a trauma surgeon. so i spent the day google searching and > learning what you can from the net. my question is, i have bcbs, i > am in utah. am i intercoursed as one would say. i have not seen a > doctor on their dime yet, just had some x-rays and a consultation. > my pain level is getting up there. i cannot climb anymore, and it > has been my passion for twenty years. i am a blue collar worker. i > make my living on my back. i think ican hold on for another year > before this becomes dibilitating i.e. it takes more than a half hour > to get out of bed in the morning. i know i have to make a career > change, but that does not frighten me as much as not being covered > on insurance. i am looking for pointers on how to navigate this > mess. also, how much does this doctor in belgium cost? i have some > savings, and if what i read is good and aplicable for my situation, > this may be the route for me. > bob e-mail @ beeohbe200@y... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Bob: The hospital and surgeon fees in Belgium are about $10,000 US (then there is airfare and whatever time you spend at the Holiday Inn) It is a complete bargain if you have pay yourself. Pamela LBHR De Smet October 23, 02 > so it is feb. 7 and i got diagnosed this morning at 10:30. i am 37 > year old living in salt lake city and i am realing. i thought i had > just injured my acetabular labrum or some such thing, and this doctor > comes in after x-rays and says, " osteoarthritis. you need a new > hip. or we could do this other reshaping of my pelvis operation that > sounds horrific. " i said let me think about this. he did not even > mention resufracing. i do not know how far along i am really. i am > going to go see another doctor next week. try and find one who > specializes in oa (dag! i am already talking in the language). this > one was a trauma surgeon. so i spent the day google searching and > learning what you can from the net. my question is, i have bcbs, i > am in utah. am i intercoursed as one would say. i have not seen a > doctor on their dime yet, just had some x-rays and a consultation. > my pain level is getting up there. i cannot climb anymore, and it > has been my passion for twenty years. i am a blue collar worker. i > make my living on my back. i think ican hold on for another year > before this becomes dibilitating i.e. it takes more than a half hour > to get out of bed in the morning. i know i have to make a career > change, but that does not frighten me as much as not being covered > on insurance. i am looking for pointers on how to navigate this > mess. also, how much does this doctor in belgium cost? i have some > savings, and if what i read is good and aplicable for my situation, > this may be the route for me. > bob e-mail @ beeohbe200@y... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Bob: The hospital and surgeon fees in Belgium are about $10,000 US (then there is airfare and whatever time you spend at the Holiday Inn) It is a complete bargain if you have pay yourself. Pamela LBHR De Smet October 23, 02 > so it is feb. 7 and i got diagnosed this morning at 10:30. i am 37 > year old living in salt lake city and i am realing. i thought i had > just injured my acetabular labrum or some such thing, and this doctor > comes in after x-rays and says, " osteoarthritis. you need a new > hip. or we could do this other reshaping of my pelvis operation that > sounds horrific. " i said let me think about this. he did not even > mention resufracing. i do not know how far along i am really. i am > going to go see another doctor next week. try and find one who > specializes in oa (dag! i am already talking in the language). this > one was a trauma surgeon. so i spent the day google searching and > learning what you can from the net. my question is, i have bcbs, i > am in utah. am i intercoursed as one would say. i have not seen a > doctor on their dime yet, just had some x-rays and a consultation. > my pain level is getting up there. i cannot climb anymore, and it > has been my passion for twenty years. i am a blue collar worker. i > make my living on my back. i think ican hold on for another year > before this becomes dibilitating i.e. it takes more than a half hour > to get out of bed in the morning. i know i have to make a career > change, but that does not frighten me as much as not being covered > on insurance. i am looking for pointers on how to navigate this > mess. also, how much does this doctor in belgium cost? i have some > savings, and if what i read is good and aplicable for my situation, > this may be the route for me. > bob e-mail @ beeohbe200@y... Quote Link to comment Share on other sites More sharing options...
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