Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Welcome Gareth, Tammy and sweet Brett! What a great story. That's really quite fantastic about your sister's feet. Do you know much about how her treatment went? How many casts did she need? And did she wear the FAB afterwards and for how long? I'm just curious. Good luck with the DBB - since you've been around for a while you've probably soaked up a bunch of information about how it's to be set up and getting it on right. I hope it's pain and unhappiness free for you - let us know how it goes. That has done a bang up job for people in SA - Whoohoo ! Think of where little Brett would be without you :~} Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 Gareth- Thank you for sharing your story! I'm so glad you didn't settle with the first doctor and sought out a better one for your child. Best of luck! > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Introduction >Date: Thu, 06 May 2004 10:12:14 -0000 > >Hi My name is Gareth my wife 's name is Tammy, our son, Brett was >born on 14/01/2004 with moderate to severe BL CF. I have been >watching this site for a couple of months and have finally worked up >the courage to introduce myself. We are from South Africa and have a >4 year old daughter aswell. > >Brett was also born with a very small cleft pallet which at the time >worried us more than the feet as my sister was born with club feet 27 >years ago. In those days there was one Dr in our country who did not >operate on club feet unless casting did not work. All the other Dr's >wanted to operate, needless to say my sister has played all sorts of >sport at a high level even playing for a men's roller hockey side. So >with this in mind we set off to see her Dr who was still practising, >I looked on the internet for information and found the Ponseti >method. My wife and I decided before we went in that if he mentioned >surgery we would get a second opinion. We went in and he explained >that he would cast for 4 months, may need a tenotomy and will need to >wear the FAB. We left feeling very happy and excited > >The next visit I asked the Dr about Dr Ponseti and he was impressed >that I knew quite a bit, he also told us that he was in contact with >Dr P as you all call him. his feet started to look better and week >after week we went back to be re-casted. About 5 weeks into that >castings I found a South African web site http:\\www.clubfoot.co.za >which has been designed by a lady who you all know quite well, >Moss. On the website I read that there were no Ponseti trained Dr's >in SA pre 2003, I straight away e-mailed her the story about the Dr >who had fixed my sisters feet and that we were seen him. She replied >immediately and in a round about way told us that he had been 's >firs Dr and that he may be doing the Ponseti method but he is >modifying it. I looked at the checklist on her website and 2 things >stood out, castings should be 4-6 maybe 8 if needed and the Dr should >have an assistant to cast while he holds the foot. Our Dr said 4 >months of casts +- 16, he also did the casting himself. We went to >visit and Steve and met , we watched a tape that showed Dr >Ponseti working on babies feet. Once my wife was convinced that our >Dr was doing the wrong thing we asked him if we can see another Dr >and he was very good about the whole thing and referred us to Dr Mark >Eltrigham who has studied with Dr Hartzenburg, also highly >recommended him as there are only 2 Dr's in South Africa who have had >training in the P method. (the more I research the more I can see >that my Sister was one of the very lucky 50% that did not need >surgery in those days) > >We had three cast and what a difference! The three casts had >corrected both feet to 70 degrees, even after 7 casts with the first >Dr he was saying that the one foot would need to be operated on. >Brett had his Tenotomy on Friday 23rd April and Tomorrow we go into >the FAB and he can have a proper bath again....he loves his baths, >after seen all the posts and been watching for that last month I need >to say that the information that you all share, you will never find >in a book, it is undoubtedly the most priceless information anyone >going through this, can get. I thought that I would share our story >as It may help someone els and also to say thank you to each and >every one of you for all the tips and information. > >Gareth and Brett > > > _________________________________________________________________ Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage! http://join.msn.com/?pgmarket=en-us&page=hotmail/es2&ST=1/go/onm00200362ave/dire\ ct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Kori, I have asked my mother and my sister started the casting at 6 months old, the casts went up to the Knee (Not Dr. P Method) she had the bar that could not be adjusted....she wore the shoes during the day and the bar was then put onto the shoes at night time, she got out of the shoes at 2 and a half. The only problem that she has is that her ankles are the first to go when playing sport, I remember her injuries were always twisted ankle and ligaments, but her feet look so normal. so that is why the more I research the more I can say she was really one of the lucky ones. I also don't know how severe her feet were but I was told they were quite bad. Gareth and Brett Re: Introduction Welcome Gareth, Tammy and sweet Brett! What a great story. That's really quite fantastic about your sister's feet. Do you know much about how her treatment went? How many casts did she need? And did she wear the FAB afterwards and for how long? I'm just curious. Good luck with the DBB - since you've been around for a while you've probably soaked up a bunch of information about how it's to be set up and getting it on right. I hope it's pain and unhappiness free for you - let us know how it goes. That has done a bang up job for people in SA - Whoohoo ! Think of where little Brett would be without you :~} Kori Mama of Kenton - 6/98 Merek - 3/00 Darbi - 3/28/03 - Rt. CF - DBB 12hr/d (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Welcome, Tamsin & Jasper! I'm glad that your little guy seems to be growing by leaps and bounds! I don't have many suggestions for you regarding dealing with gas (wind) for a baby in casts. My little girl with clubfoot (talipes) didn't have any digestive issues, luckily. However, my son, who *didn't* have any casts, did have reflux issues. I know how hard it is when their tummy is giving them trouble and there's nothing you can do to comfort them!!!! Have you tried the gas drops? I believe it's called mylicon drops here (spelling might be off) in the States. My only suggestion for the reflux (which you're probably already doing) is to keep him upright for as long as possible after he eats. We did have my son on stomach-acid reducers (prescription medication) also for a while. I also learned in an infant massage class that you should rub their tummy in a semi-circle (upside down " u " , or rainbow shape) in a clock-wise direction from just below the navel, up and around under the rib cage, then back down, then lift your hand and repeat. This is the direction of digestion in the colon and will help to move the bubbles out of his system. (rub in circles in the opposite counter-clockwise direction if you're rubbing his back) Welcome to our board! & (3-16-00) left clubfoot > Hi, > Our son Jasper was born on May 13, 2004 with bilateral talipes, measuring 4.5 each. he > spent the first three weeks in NICU and needed constant heel pricks and arterial lines so > couldn't be cast until this was over. He is now in his third cast, changed every 5 days. It > was going to be every 7 but because he is a low birth weight baby he is growing super fast > and the casts get too tight on those last days (some days he puts on 80 grams) so the > hospital agreed to cast over a shorter period (which is still recommended by the Ponseti > method). When the casts are taken off (the hospital said to do this the night before but our > reseach recommended as close a time as possible btn casts, so we take them off a couple > of hours before, enough time to bath Jasper and then drive to the hospital) the front of his > feet are a little swolen, but we have been told that this will reduce after casting is > complete. > > Jasper's biggest problem at the moment seems to be colic or wind. Before the casts were > put on he had no problems but with the casts he cant seem to get his legs around into > enough positions to help his digestion. In the few hours that he is cast free he seems > much happier and doesn't seem to have any problems and his legs are working away but > with the casts he gets miserable and wakes himself up often, especially if there is a > blanket over his legs which makes it even harder for him to lift them. He is a breastfed > baby which is supposed to minimise wind, and I burp him four times during feeding. He > also has reflux. When we hear his pain cry we try to help him by lifting his legs and > rubbing his tummy but he seems to want to bend his knees and lift them right up and > cant, so he strains really hard and cries. Has anyone else had this problem? Any solutions > or do we just have to stick it out until he is in the brace (and does the problem go away > then?) > > Thanks for your help, > Tamsin > Sydney, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 My dd also had gas problems (colic?) in the cast. We found that caring her on one arm with her tummy down helped (her head by my elbow and my hand under her tummy). I think the extra pressure on her tummy and me being able to pat her back helped. Sense you are nursing you might need to watch what you eat. I know chocolate and milk were big ones for me. My dd was terribly gassy if I had any chocolate or milk. After she was about 2 months old it got a lot better. HTH. Tori 1/30/04 bilateral atypical cf brace 23/7 12/7/01 non cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi Tamsin, Congratulations on the birth of your son! I can sympathize with the Colic issue. My first daughter had it (she is nearly 5 now) and it is difficult enough to deal with on its own, without the casts. Our second daughter has the clubfoot, but no colic, so not sure how to deal with the cast issue, but can tell you that once he has the bar and shoes, it takes a couple of days to figure it out, but he will be waving that thing all over the place. He will be able to do the kicking motion that seems to help them get the gas out, it's just that his legs will move back and forth at the same time. You can help him learn this by moving the bar yourself back and forth when he has it on, so he can get the motion down. Our colicy daughter seemed to gain relief when we laid her on her tummy with something putting pressure on her belly, like one of those wedges you can lay them in position in their crib, or just a pillow in the right spot. Mylicon drops helped too. Best of luck. Let us know how you get on and just remember he won't have it forever. We got relief from the colic just before she was three months. I know all babies are different, but that is how it went for us. Louisa and little Zoe 2-22-04 Right Unilateral Clubfoot > Hi, > Our son Jasper was born on May 13, 2004 with bilateral talipes, measuring 4.5 each. he > spent the first three weeks in NICU and needed constant heel pricks and arterial lines so > couldn't be cast until this was over. He is now in his third cast, changed every 5 days. It > was going to be every 7 but because he is a low birth weight baby he is growing super fast > and the casts get too tight on those last days (some days he puts on 80 grams) so the > hospital agreed to cast over a shorter period (which is still recommended by the Ponseti > method). When the casts are taken off (the hospital said to do this the night before but our > reseach recommended as close a time as possible btn casts, so we take them off a couple > of hours before, enough time to bath Jasper and then drive to the hospital) the front of his > feet are a little swolen, but we have been told that this will reduce after casting is > complete. > > Jasper's biggest problem at the moment seems to be colic or wind. Before the casts were > put on he had no problems but with the casts he cant seem to get his legs around into > enough positions to help his digestion. In the few hours that he is cast free he seems > much happier and doesn't seem to have any problems and his legs are working away but > with the casts he gets miserable and wakes himself up often, especially if there is a > blanket over his legs which makes it even harder for him to lift them. He is a breastfed > baby which is supposed to minimise wind, and I burp him four times during feeding. He > also has reflux. When we hear his pain cry we try to help him by lifting his legs and > rubbing his tummy but he seems to want to bend his knees and lift them right up and > cant, so he strains really hard and cries. Has anyone else had this problem? Any solutions > or do we just have to stick it out until he is in the brace (and does the problem go away > then?) > > Thanks for your help, > Tamsin > Sydney, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 My son had a similar problem. My son's right foot is CF. He was and still is breastfed. He had some sort of constipation. (After talking to medical personal, LLL (Le Leche League) and lactation experts ) He would sometimes take up to 6 weeks to poop. After talking to experts and them listening to what I had to say, this is what we came up with. Most children pull their legs up to poop but because my son's leg was in a cast he was not able to do this. As soon as the casts came off he has normal bowel movements now. Also there was a time when my son had a pressure sore and they cut his leg when removing the cast he had normal bowel movements. His Dr. said not to worry until it was 6 weeks. I would be frantic. I would watch the days and he would go poop like the day before or the day of my call to his Dr. I hope this is in some way helpful. LaRena Dillon 1/17/03 Right CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi Tasmin! Welcome to the board! I am so glad I found this group when my son Ethan was born with clubfoot in March! Everyone on here is so helpful!! Ethan never had colic or a lot of gas, but he did not like to lay down in his casts. We solved this by taking a baby blanket and folding it up, as if putting it away, and placing it under the casts in the bassinet when he went to sleep. It helps take the weight of those casts off his poor little legs! Once Ethan was in the DBB we left it there also. Maybe Jasper would benefit from that as well. Good luck, Tina Dylan 3-21-00 Ethan 3-06-04 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Welcome to the group Rhudell. I am glad that you posted to introduce yourself but sorry that you have been dealing with NS for so long, or at all for that matter. I was diagnosed four and half years ago, though have been dealing with NS for quite a bit longer. I just posted about my current meds etc so wont write that all over again. Nine years is a long time to be on treatments, what meds are you on now and what have you been on in the past? I have mostly CNS , spinal, and muscular involvement, well and pancreas involvement I suppose. These are the areas that give me troubles. I do show positive CT's but my lungs are asymptomatic. (for now, though they certainly were not in the past). I am 39 and the mother of 6. Tell us about yourself. You are right when you say no two NS patients are the same in symptoms or treatments, everyone is very different, yet share some similarities and able to relate so well to what each other is going through. Take care and again, welcome to the group! Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Welcome to the group Rhudell. I am glad that you posted to introduce yourself but sorry that you have been dealing with NS for so long, or at all for that matter. I was diagnosed four and half years ago, though have been dealing with NS for quite a bit longer. I just posted about my current meds etc so wont write that all over again. Nine years is a long time to be on treatments, what meds are you on now and what have you been on in the past? I have mostly CNS , spinal, and muscular involvement, well and pancreas involvement I suppose. These are the areas that give me troubles. I do show positive CT's but my lungs are asymptomatic. (for now, though they certainly were not in the past). I am 39 and the mother of 6. Tell us about yourself. You are right when you say no two NS patients are the same in symptoms or treatments, everyone is very different, yet share some similarities and able to relate so well to what each other is going through. Take care and again, welcome to the group! Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Welcome to the group Rhudell. I am glad that you posted to introduce yourself but sorry that you have been dealing with NS for so long, or at all for that matter. I was diagnosed four and half years ago, though have been dealing with NS for quite a bit longer. I just posted about my current meds etc so wont write that all over again. Nine years is a long time to be on treatments, what meds are you on now and what have you been on in the past? I have mostly CNS , spinal, and muscular involvement, well and pancreas involvement I suppose. These are the areas that give me troubles. I do show positive CT's but my lungs are asymptomatic. (for now, though they certainly were not in the past). I am 39 and the mother of 6. Tell us about yourself. You are right when you say no two NS patients are the same in symptoms or treatments, everyone is very different, yet share some similarities and able to relate so well to what each other is going through. Take care and again, welcome to the group! Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 --- rhudell_bbd Rhudell@...> wrote: > Hello. My name is Rhudell. I am 51 and was diagnosed > with > neurosarcoidosis in 1996. I've been told that I've > probably had it > all my life. There have been many tests and > treatments over the years > but, I seem to have finally settled into 'my > particular'cycle. I have > been on several meds for all of the 9 years of > treatment and have gone > through a few others that were either not effective > or, as in the > case with Enbrel, unaffordable. I am a very lucky > man. Once diagnosed, > I responded positively to most treatments they've > tried on me. I have > gone from a high of constant intravenous drip of > prednisone down to > 20mg every other day. I'll give more detail of > myself and my dealings > with this illness in future writings. My experiences > with other > groups has taught me that no two " Sarco's " have all > the same symptoms, > or combination of symptoms (that goes double for > treatments) so, I'm > sure to enjoy exchanging info and stories with you > all. > Take good care, > R > > Rhudell- Welcome to our group-looking forward to learning more about u and that u are able to get positive info about living with sarc from us. Take care matthew in Seattle > > ____________________________________________________ Yahoo! Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 --- rhudell_bbd Rhudell@...> wrote: > Hello. My name is Rhudell. I am 51 and was diagnosed > with > neurosarcoidosis in 1996. I've been told that I've > probably had it > all my life. There have been many tests and > treatments over the years > but, I seem to have finally settled into 'my > particular'cycle. I have > been on several meds for all of the 9 years of > treatment and have gone > through a few others that were either not effective > or, as in the > case with Enbrel, unaffordable. I am a very lucky > man. Once diagnosed, > I responded positively to most treatments they've > tried on me. I have > gone from a high of constant intravenous drip of > prednisone down to > 20mg every other day. I'll give more detail of > myself and my dealings > with this illness in future writings. My experiences > with other > groups has taught me that no two " Sarco's " have all > the same symptoms, > or combination of symptoms (that goes double for > treatments) so, I'm > sure to enjoy exchanging info and stories with you > all. > Take good care, > R > > Rhudell- Welcome to our group-looking forward to learning more about u and that u are able to get positive info about living with sarc from us. Take care matthew in Seattle > > ____________________________________________________ Yahoo! Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 --- rhudell_bbd Rhudell@...> wrote: > Hello. My name is Rhudell. I am 51 and was diagnosed > with > neurosarcoidosis in 1996. I've been told that I've > probably had it > all my life. There have been many tests and > treatments over the years > but, I seem to have finally settled into 'my > particular'cycle. I have > been on several meds for all of the 9 years of > treatment and have gone > through a few others that were either not effective > or, as in the > case with Enbrel, unaffordable. I am a very lucky > man. Once diagnosed, > I responded positively to most treatments they've > tried on me. I have > gone from a high of constant intravenous drip of > prednisone down to > 20mg every other day. I'll give more detail of > myself and my dealings > with this illness in future writings. My experiences > with other > groups has taught me that no two " Sarco's " have all > the same symptoms, > or combination of symptoms (that goes double for > treatments) so, I'm > sure to enjoy exchanging info and stories with you > all. > Take good care, > R > > Rhudell- Welcome to our group-looking forward to learning more about u and that u are able to get positive info about living with sarc from us. Take care matthew in Seattle > > ____________________________________________________ Yahoo! Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports.yahoo.com Quote Link to comment Share on other sites More sharing options...
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