Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Hello Mike, Welcome! I noticed that in the questionaire you mentioned the Snake River.....Do you live in Idaho? I am only asking because I live in Idaho. Used to live in southern Idaho most of my life but now I live in Northern Idaho. Mick Alsup rosesrafterman@...> wrote: Hi all, by way of introducing myself, I will just answer the questions in the welcome letter for now, but please feel free to contact me at any time or ask anything you want to know. Age range: I am 41 Male/female: Male What are the symptoms? Generalized pain, fatuige, muscular tremors and weakness, cramping and spasms, IBS, interrupted sleep patterns, increased susceptibility to heat, cold, humidity, short term memory loss, shortened attention span, mild dyslexia, migraines, mood swings, numbness and weakness in hands and feet, and on and on and on... Has you illness been diagnosed? I was diagnosed in March of 2000 How long did you suffer before you got help? I first started to experiance symptoms in the late 80's. a couple of years after breaking my back in a fall. They increased in severity over the years, untill I could no longer pursue my chosen profesion, and I was forced to go from DR to DR looking for answers. I should have known what was wrong with me, as both of my sisters have FM, one with CFS as well. It was not untill I mentioned my frustration to my sister that she refered me to het DR and I was diagnosed. Is there a time that you can remember when it started? The first time I can positively say was on a rafting trip down the Snake river, I suddenly ran out of steam quite early in the day, and was hit by muscle cramps in my hands, arms, neck, back and shoulders,as well as tingling in my hands. I know I had been slowly losing my endurance before that, but that was the first time I knew there was something more than just being " wimpy " ar that particular time. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? I also suffer from a lack of appititre, so becoming overweight has not been my problem, quite the oposite, in fact. Are you on disability? No, and hope to avoid that, if at all possible. I have been on short term in the past, and found it affects my mood, and thus my health more than the strain of doing minimumly physicaly demanding work. If you are any pointers for others trying to get on disability? Just one, get a lawyer who specializes in " orphan conditions " , and never give up, thats what they hope you will do - just give up and go away. What have you found that helps ease the pain, warm baths, medications etc.? tricyclic anti deppresants, for sleep and mood, mild excersice, and the love and understanding support of my family and friends, Do you have sleep problems? How do you deal with it? See above Do you have family that understands your illness? Yes, see above Some have found certain foods causes problems with CFS or Fibro, have you? Cheese or foods with live cheese culture can agravate the migraines, and excesive carbs agravate the IBS What type of Doctor have you found that has helped you the most? currently I am being treated by a Ruemy and an Internist who specialises in CF/CFS. Again, greetings to all, and hope to meet and talk to many of you soon... Mike --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Hello Mike, Welcome! I noticed that in the questionaire you mentioned the Snake River.....Do you live in Idaho? I am only asking because I live in Idaho. Used to live in southern Idaho most of my life but now I live in Northern Idaho. Mick Alsup rosesrafterman@...> wrote: Hi all, by way of introducing myself, I will just answer the questions in the welcome letter for now, but please feel free to contact me at any time or ask anything you want to know. Age range: I am 41 Male/female: Male What are the symptoms? Generalized pain, fatuige, muscular tremors and weakness, cramping and spasms, IBS, interrupted sleep patterns, increased susceptibility to heat, cold, humidity, short term memory loss, shortened attention span, mild dyslexia, migraines, mood swings, numbness and weakness in hands and feet, and on and on and on... Has you illness been diagnosed? I was diagnosed in March of 2000 How long did you suffer before you got help? I first started to experiance symptoms in the late 80's. a couple of years after breaking my back in a fall. They increased in severity over the years, untill I could no longer pursue my chosen profesion, and I was forced to go from DR to DR looking for answers. I should have known what was wrong with me, as both of my sisters have FM, one with CFS as well. It was not untill I mentioned my frustration to my sister that she refered me to het DR and I was diagnosed. Is there a time that you can remember when it started? The first time I can positively say was on a rafting trip down the Snake river, I suddenly ran out of steam quite early in the day, and was hit by muscle cramps in my hands, arms, neck, back and shoulders,as well as tingling in my hands. I know I had been slowly losing my endurance before that, but that was the first time I knew there was something more than just being " wimpy " ar that particular time. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? I also suffer from a lack of appititre, so becoming overweight has not been my problem, quite the oposite, in fact. Are you on disability? No, and hope to avoid that, if at all possible. I have been on short term in the past, and found it affects my mood, and thus my health more than the strain of doing minimumly physicaly demanding work. If you are any pointers for others trying to get on disability? Just one, get a lawyer who specializes in " orphan conditions " , and never give up, thats what they hope you will do - just give up and go away. What have you found that helps ease the pain, warm baths, medications etc.? tricyclic anti deppresants, for sleep and mood, mild excersice, and the love and understanding support of my family and friends, Do you have sleep problems? How do you deal with it? See above Do you have family that understands your illness? Yes, see above Some have found certain foods causes problems with CFS or Fibro, have you? Cheese or foods with live cheese culture can agravate the migraines, and excesive carbs agravate the IBS What type of Doctor have you found that has helped you the most? currently I am being treated by a Ruemy and an Internist who specialises in CF/CFS. Again, greetings to all, and hope to meet and talk to many of you soon... Mike --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Hello Mike, Welcome! I noticed that in the questionaire you mentioned the Snake River.....Do you live in Idaho? I am only asking because I live in Idaho. Used to live in southern Idaho most of my life but now I live in Northern Idaho. Mick Alsup rosesrafterman@...> wrote: Hi all, by way of introducing myself, I will just answer the questions in the welcome letter for now, but please feel free to contact me at any time or ask anything you want to know. Age range: I am 41 Male/female: Male What are the symptoms? Generalized pain, fatuige, muscular tremors and weakness, cramping and spasms, IBS, interrupted sleep patterns, increased susceptibility to heat, cold, humidity, short term memory loss, shortened attention span, mild dyslexia, migraines, mood swings, numbness and weakness in hands and feet, and on and on and on... Has you illness been diagnosed? I was diagnosed in March of 2000 How long did you suffer before you got help? I first started to experiance symptoms in the late 80's. a couple of years after breaking my back in a fall. They increased in severity over the years, untill I could no longer pursue my chosen profesion, and I was forced to go from DR to DR looking for answers. I should have known what was wrong with me, as both of my sisters have FM, one with CFS as well. It was not untill I mentioned my frustration to my sister that she refered me to het DR and I was diagnosed. Is there a time that you can remember when it started? The first time I can positively say was on a rafting trip down the Snake river, I suddenly ran out of steam quite early in the day, and was hit by muscle cramps in my hands, arms, neck, back and shoulders,as well as tingling in my hands. I know I had been slowly losing my endurance before that, but that was the first time I knew there was something more than just being " wimpy " ar that particular time. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? I also suffer from a lack of appititre, so becoming overweight has not been my problem, quite the oposite, in fact. Are you on disability? No, and hope to avoid that, if at all possible. I have been on short term in the past, and found it affects my mood, and thus my health more than the strain of doing minimumly physicaly demanding work. If you are any pointers for others trying to get on disability? Just one, get a lawyer who specializes in " orphan conditions " , and never give up, thats what they hope you will do - just give up and go away. What have you found that helps ease the pain, warm baths, medications etc.? tricyclic anti deppresants, for sleep and mood, mild excersice, and the love and understanding support of my family and friends, Do you have sleep problems? How do you deal with it? See above Do you have family that understands your illness? Yes, see above Some have found certain foods causes problems with CFS or Fibro, have you? Cheese or foods with live cheese culture can agravate the migraines, and excesive carbs agravate the IBS What type of Doctor have you found that has helped you the most? currently I am being treated by a Ruemy and an Internist who specialises in CF/CFS. Again, greetings to all, and hope to meet and talk to many of you soon... Mike --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 Nisha, Hello and welcome to the group! Congratulations on your little boy! Aren't little boys great?!?!! Anyway, I was just wondering what you meant when you said his foot curved upward? From everything I've learned & read, Dr. Ponseti is firm that the casts should correct the feet, and the shoes/bar only hold the correction. So if the feet aren't completely corrected when you put the shoes on, it may cause issues. I just wasn't clear on what you mean by curving upward. Anyway, we can't wait to hear more about you & ! , mommy of: Guinevere, on, Ava 8/4/04 right CF DBB 23/7 > > > Hello everyone, > Im new to this group and just wanted to say hello. We are in Sydney, > Australia and this is my first baby. My husband was also born with > clubfoot 26 years ago and we picked up the talipes in the baby on my > 18wk ultrasound. > > My son was born with bi-lateral talipes and is currently > 14wks old (3 months. He was put into his first plaster cast at 3 > days old and had them changed every week till he was 11 weeks. Just > before Xmas he had his Heel release surgery done and yesterday he > got his final plasters removed. > > There is a great improvement in his right foot but his left is still > showing a bit of a curve upwards. The specialist, Dr Bellemore, is > happy with the results and has instructed us to do some daytime > streches with his feet and to wear the open-toed boots and bar at > nights only. > > We are waiting on getting the boots in. Due to the xmas hilodays the > specialist shoe places arent open till next week so we have t wait > it out. Im really anxious to get him into those shoes at night - i > really want to get that left foot to improve! > > Anyway, i look forward to sharing more experiences with you all and > wish you all good health and a safe New Year. > > Nisha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Nisha, Welcome to the group. You have come to the right place to get answers. I don't want to startle you in anyway, but I am concerned in several areas. I too don't quite understand what you mean about the foot going up. Secondly, the shoes (DBB) should be worn 23 hours a day, 7 days a week after the casts are removed for at least 3 months. If the shoes aren't used immediately, there is high risk of relapse. Also, 14 hours per day just isn't enough. The feet should be completely corrected after the casts treatment. Then the shoes hold the correction as they grow. I don't know the crudentials of the doctor you are seeing. I think there are others on this board from Sydney as well who might know him. Please read more information about the Ponseti Method on his website. Can someone please give the web address? I don't have it handy. Please, I don't want to make you panic, but there are some red flags from your treatment you may want to look into further. There are many of us on this site who started with bad doctors and had to start treatment over further down the road. You don't want that to happen, and neither does . Please let us know how things go. Congrats on your little one! Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Welcome, Nisha & ! I, too, am very concerned about your description of ' foot and the fact that the brace was not already prepared for you when his last cast came off. I realize that Dr. Bellemore is on Dr. Ponseti's qualified physician's list, but from what you've described, many things certainly don't sound appropriate to me per standard Ponseti protocol. Were ' feet particularly difficult to correct, or are there any complications that Dr. Bellemore has mentioned? Eleven weeks of casting prior to a tenotomy is quite a bit. Usually, correction is achieved in 5-7 casts changed weekly, up to 9 for the most severe cases per Dr. Ponseti's documentation. Perhaps you can join the cfpics group- http://groups.yahoo.com/group/cfpics and share photographs of ' feet with us. Take a look at the pictures in the photos and files sections on this website and the cfpics website (this site's photo section is full) so you can refer to what some of the other children's castings, braces and bare feet look like during and after treatment. It sounds like you could really use another doctor's opinion on ' feet and perhaps one or two more casts to complete the correction. The brace should be worn full time (23 hours/day) for the first 3 months after full correction is achieved. Just a few hours without casting or bracing initially could cause his foot/feet to lose some of the correction that was just obtained. (this is the reason that casts aren't removed the night before appointments also) I want to reiterate what the others have posted- the brace is meant to maintain correction and won't help to achieve any more correction. If ' foot is not corrected, you could have a hard time keeping the shoe on his foot and the brace could be uncomfortable for him as well. Here is a website with quite a bit of information that might help you: http://pages.ivillage.com/ponseti_links Here is Dr. P's website: http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html I hope this information doesn't upset you- we just want the best for you and your baby and will answer any questions and get you whatever information you need to help you make decisions about his treatment. Regards, & (3-16-00) left clubfoot http://ponseticlubfoot.freeservers.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Welcome Nisha and Nicolas. I hope you enjoyed your first Christmas with your little one! The previous posts are very informative. Please ask questions if you have them! Louisa 6-27-99 Zoe 2-22-04 RCF FAB 16/7 > > > Hello everyone, > Im new to this group and just wanted to say hello. We are in Sydney, > Australia and this is my first baby. My husband was also born with > clubfoot 26 years ago and we picked up the talipes in the baby on my > 18wk ultrasound. > > My son was born with bi-lateral talipes and is currently > 14wks old (3 months. He was put into his first plaster cast at 3 > days old and had them changed every week till he was 11 weeks. Just > before Xmas he had his Heel release surgery done and yesterday he > got his final plasters removed. > > There is a great improvement in his right foot but his left is still > showing a bit of a curve upwards. The specialist, Dr Bellemore, is > happy with the results and has instructed us to do some daytime > streches with his feet and to wear the open-toed boots and bar at > nights only. > > We are waiting on getting the boots in. Due to the xmas hilodays the > specialist shoe places arent open till next week so we have t wait > it out. Im really anxious to get him into those shoes at night - i > really want to get that left foot to improve! > > Anyway, i look forward to sharing more experiences with you all and > wish you all good health and a safe New Year. > > Nisha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Nisha, Welcome to the group!! Is your doctor Ponsetti-trained? As others have posted, it is recommended that cf children wear the bar and shoes for 3 months 23 hours per day to avoid relapse. We just saw our ortho surgeon this week and he gave us the statistic that 80% of childen who do not comply with the 23/7 will need further sugery later on. Hope that helps! Lori -------------- Original message -------------- Hello everyone, Im new to this group and just wanted to say hello. We are in Sydney, Australia and this is my first baby. My husband was also born with clubfoot 26 years ago and we picked up the talipes in the baby on my 18wk ultrasound. My son was born with bi-lateral talipes and is currently 14wks old (3 months. He was put into his first plaster cast at 3 days old and had them changed every week till he was 11 weeks. Just before Xmas he had his Heel release surgery done and yesterday he got his final plasters removed. There is a great improvement in his right foot but his left is still showing a bit of a curve upwards. The specialist, Dr Bellemore, is happy with the results and has instructed us to do some daytime streches with his feet and to wear the open-toed boots and bar at nights only. We are waiting on getting the boots in. Due to the xmas hilodays the specialist shoe places arent open till next week so we have t wait it out. Im really anxious to get him into those shoes at night - i really want to get that left foot to improve! Anyway, i look forward to sharing more experiences with you all and wish you all good health and a safe New Year. Nisha Quote Link to comment Share on other sites More sharing options...
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