Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Can your son roll over on his own? If so, have you tried positioning him on his side with the " top " foot leaning against the side of the crib? My son is 5 months old & he loves sleeping in this position. It looks odd, but he started rolling himself into this position a few weeks ago & we just went with it. I know the experts say to always place the baby to sleep on his back, but I've read that if the child is able to roll over on his own he has sufficient head control to move his head if he can't breathe. Good luck! Mom to Declan, born 2/16/06, BCF, DBB 23/7 > > Hi everyone. My 4 month old son started wearing the brace about 6 > weeks ago. It took him a week to get used to it, but is totally > comfortable during the day. He's even rolling over with it now! > > The problems begin at night. Since we got the brace, he's had a > horrible time sleeping. He wakes up every 2 or 3 hours and can't get > back to sleep. I've tried putting him in the pack 'n play and > propping his feet up with a pillow. Nothing seems to help. I don't > mind getting up with him, but I have to go back to work in 3 weeks > (which i'm completely distraught about to begin with). and getting up > at 5:30 every morning to teach teenagers is not exactly a bowl of > cherries to begin with. > > I'm willing to try anything at this point! > > > (Logan 4 months. Left clubfoot) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Hi , I know exactly what your talking about. My son is almost a year and we still get up several times a night. I have also tried the pack'n play, propping the feet, you name it, I've done it. We co-sleep with him now and take turns getting up with him. Some nights are great and others are terrible. As has gotten stronger, the issues have seemed to increase. I guess I have just come to the realization that I will be sleep deprived for some time. I am also a working mom and teach teenagers. Sorry I haven't got any great ideas. 's mom >>> mmg174@... 07/28/06 11:49 AM >>> Hi everyone. My 4 month old son started wearing the brace about 6 weeks ago. It took him a week to get used to it, but is totally comfortable during the day. He's even rolling over with it now! The problems begin at night. Since we got the brace, he's had a horrible time sleeping. He wakes up every 2 or 3 hours and can't get back to sleep. I've tried putting him in the pack 'n play and propping his feet up with a pillow. Nothing seems to help. I don't mind getting up with him, but I have to go back to work in 3 weeks (which i'm completely distraught about to begin with). and getting up at 5:30 every morning to teach teenagers is not exactly a bowl of cherries to begin with. I'm willing to try anything at this point! (Logan 4 months. Left clubfoot) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Hi there , 's mom, and all the other parents out there: My son e just turned one. He has been wearing the Ponseti shoes and bar since he was 5 months old. He still wakes up every 1-3 hrs, depending on the night. He screams, cries, and kicks his legs in frustration. It is extremely difficult to cope with, and no one ever gets any sleep. We tried the crib, pack and play, pillows, etc., but nothing has worked. e's PT suggested we ask our ortho for a possible option. He suggested we try the Wheaton Brace Company. They make an " ankle foot brace " (not correct term) that does not require a bar. They will not be able to sell it directly to you, so you'll have to go to HANGER Orthodics Company (they have offices all over the country and are apparently the first, and largest, orthodics company in the world). Our ortho does not like to prescribe alternatives to the Ponseti shoes & bar, since e has not had any peace since birth (between the castings, 2 surgeries, and now the shoes and bar), he gave in to our please to try something for the sake of everyone's sanity and especially for our child's little sleep-deprived nervous system. So, ask your ortho if he thinks this brace is right for your child. e's clubfeet were very clubbed, and they're looking great now, so we're going to give this alternative brace a shot. It's pricy (approx. $1000) but most insurances will cover at least 80% of that. Let me know if you have any other questions that I might be able to answer. Best wishes and God Bless, Assunta -- nuscadagon@... nosurgery4clubfoot , " Tamera Felcoski " wrote: > > Hi , > > I know exactly what your talking about. My son is almost a year and we > still get up several times a night. I have also tried the pack'n play, > propping the feet, you name it, I've done it. We co-sleep with him now > and take turns getting up with him. Some nights are great and others are > terrible. As has gotten stronger, the issues have seemed to > increase. I guess I have just come to the realization that I will be > sleep deprived for some time. I am also a working mom and teach > teenagers. Sorry I haven't got any great ideas. > 's mom > > >>> mmg174@... 07/28/06 11:49 AM >>> > Hi everyone. My 4 month old son started wearing the brace about 6 > weeks ago. It took him a week to get used to it, but is totally > comfortable during the day. He's even rolling over with it now! > > The problems begin at night. Since we got the brace, he's had a > horrible time sleeping. He wakes up every 2 or 3 hours and can't get > back to sleep. I've tried putting him in the pack 'n play and > propping his feet up with a pillow. Nothing seems to help. I don't > mind getting up with him, but I have to go back to work in 3 weeks > (which i'm completely distraught about to begin with). and getting up > at 5:30 every morning to teach teenagers is not exactly a bowl of > cherries to begin with. > > I'm willing to try anything at this point! > > > (Logan 4 months. Left clubfoot) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Hi Assunta (and others who have been asking about the sleeping in the brace), First I would like to say that there are special circumstances that could warrant a different brace, however, I would have to agree with your physician when he did not want to prescribe the Wheaton brace. The Wheaton brace is not actually designed for clubfoot and can actually cause muscle atrophy which is the last thing you want in a clubfoot. I would also like to stress that if your child's feet have been properly corrected, the traditional brace (Markell shoes and bar) or the Ponseti/ (P/M) brace will work. I understand that you may be at your wits end with the brace (probably wanting to chuck the whole thing out the window), and I don't want to sound unfeeling, far from it, I can definitely commiserate with what you are going through. I am wondering if we have ever sat down and done any troubleshooting with you to try to figure out what it is that is making e so unhappy in his brace. The #1 thing that causes what you are describing is a bar that is too short. And I'm sure you've seen that bit of advice here on the board before, but I just thought I would mention it again. There have been numerous times when a mom has said " yes, I have measured, his bar is as wide as his shoulders " , but if pressed for more details we discover that it is still not wide enough, and that was what was causing the baby to be so cranky all along. A lot of people will use a tape measure, but this is NOT a great wasy to do it, it works for some people because their particular child is not as sensitive to the width of the bar. The best way that we have found to measure this is to take the brace with the shoes on it, and set it down on the floor, shoes face up, then lay the child with his shoulders situated between the heels of the shoes. His shoulders should fit between the heels of the shoes without being scrunched up at all, in fact, a little bit of space on either side is okay. If his shoulders do not fit in this way that bar is too short. There are lots of other tips and tricks that we can walk through with you to discover what is going on that is making him so uncomfortable. I just can't caution you enough on the use of the Wheaton brace, it sounds like you've come so far, you said e's feet look great now, I hate the thought of him losing correction (muscle atrophy or shortening of the tendons/muscles) now. We will be happy to help you troubleshoot his brace set up and shoes and see what we can find that is causing him so much trouble in the P/M's. HTH, Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12hrs/day) > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year > and we > > still get up several times a night. I have also tried the pack'n > play, > > propping the feet, you name it, I've done it. We co-sleep with him > now > > and take turns getting up with him. Some nights are great and > others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will > be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I > don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and > getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Assunta, Have you ever shared with us who e's doctor is? Did he/she give you any advice as to why e might be having such a hard time with the brace? I agree with 's post that the Wheaton brace (or any standard AFO) is not designed to combat regression with a clubfoot, so I would love to see if we could help you troubleshoot e's current brace and see if there's just something about the set up or the correction of his foot/feet that is causing him some discomfort. The FAB is the best insurance you have against regression! Best wishes, & (3-16-00, lcf) > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year > and we > > still get up several times a night. I have also tried the pack'n > play, > > propping the feet, you name it, I've done it. We co-sleep with him > now > > and take turns getting up with him. Some nights are great and > others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will > be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I > don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and > getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Tamera, Have you played with the width of 's brace to see if it makes a difference? Is he in the or Markell shoes? I sympathize with your lack of sleep. My youngest (no clubfoot) didn't sleep through the night until she was over 8 mo. old and it was HORRIBLE. I didn't have an FAB to blame though, so I was really cranky and at a loss. Hang in there and hopefully you'll come up with some resolution soon! > > Hi , > > I know exactly what your talking about. My son is almost a year and we > still get up several times a night. I have also tried the pack'n play, > propping the feet, you name it, I've done it. We co-sleep with him now > and take turns getting up with him. Some nights are great and others are > terrible. As has gotten stronger, the issues have seemed to > increase. I guess I have just come to the realization that I will be > sleep deprived for some time. I am also a working mom and teach > teenagers. Sorry I haven't got any great ideas. > 's mom > > >>> mmg174@... 07/28/06 11:49 AM >>> > Hi everyone. My 4 month old son started wearing the brace about 6 > weeks ago. It took him a week to get used to it, but is totally > comfortable during the day. He's even rolling over with it now! > > The problems begin at night. Since we got the brace, he's had a > horrible time sleeping. He wakes up every 2 or 3 hours and can't get > back to sleep. I've tried putting him in the pack 'n play and > propping his feet up with a pillow. Nothing seems to help. I don't > mind getting up with him, but I have to go back to work in 3 weeks > (which i'm completely distraught about to begin with). and getting up > at 5:30 every morning to teach teenagers is not exactly a bowl of > cherries to begin with. > > I'm willing to try anything at this point! > > > (Logan 4 months. Left clubfoot) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Hi, I have one question to add to the other's who have posted (which I agree with, the Wheaton Brace is an AFO and it will not keep your son's foot corrected). You say you've got the " Ponseti " shoes and bar but since he's kicking and waking it leads me to believe that you actually have the Markell shoes and bar which are white open toe shoes with either a gold or red bar. Am I right? If so, the Ponseti FAB is actually a different brace (looks like little Birkenstock sandals with a bar). We affectionately call this the Ponseti/ FAB or PM for short and it is a very good brace with little of the problems you describe. Perhaps, you would want to look into this FAB instead of the Markell FAB (often referred to as the DBB) and it costs tons less than any AFO including the Wheaton brace. One word of caution, HANGAR tends to mark this brace (the PM's) up way too much and will quote you over $1300 when it actually costs about $380 incl. shipping if you order it directly from MD Orthopaedics. All you need is the script from the doc to get it from them and fitting is a breeze, you do not need to have an orthotist fit it for you. We can tell you everything you need to set it up at home yourself. hope this helps, Kori At 01:54 PM 7/30/2006, you wrote: >Hi there , 's mom, and all the other parents out there: >My son e just turned one. He has been wearing the Ponseti >shoes and bar since he was 5 months old. He still wakes up every 1-3 >hrs, depending on the night. He screams, cries, and kicks his legs >in frustration. It is extremely difficult to cope with, and no one >ever gets any sleep. We tried the crib, pack and play, pillows, >etc., but nothing has worked. e's PT suggested we ask our >ortho for a possible option. He suggested we try the Wheaton Brace >Company. They make an " ankle foot brace " (not correct term) that >does not require a bar. They will not be able to sell it directly to >you, so you'll have to go to HANGER Orthodics Company (they have >offices all over the country and are apparently the first, and >largest, orthodics company in the world). Our ortho does not like to >prescribe alternatives to the Ponseti shoes & bar, since e has >not had any peace since birth (between the castings, 2 surgeries, >and now the shoes and bar), he gave in to our please to try >something for the sake of everyone's sanity and especially for our >child's little sleep-deprived nervous system. So, ask your ortho if >he thinks this brace is right for your child. e's clubfeet >were very clubbed, and they're looking great now, so we're going to >give this alternative brace a shot. It's pricy (approx. $1000) but >most insurances will cover at least 80% of that. Let me know if you >have any other questions that I might be able to answer. Best wishes >and God Bless, Assunta -- <mailto:nuscadagon%40yahoo.com>nuscadagon@... > ><mailto:nosurgery4clubfoot%40yahoogroups.com>nosurgery4clubfoot \ , > " Tamera Felcoski " > wrote: > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year >and we > > still get up several times a night. I have also tried the pack'n >play, > > propping the feet, you name it, I've done it. We co-sleep with him >now > > and take turns getting up with him. Some nights are great and >others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will >be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@... 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't >get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I >don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and >getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Kori: I was just reading your response and I noticed the price that you said about the brace and the cost. I had NO idea that it was that expensive! I'll have to write down the MD Orthopedics. Dino 8mos BCF Re: Re: Sleeping with DDB Hi, I have one question to add to the other's who have posted (which I agree with, the Wheaton Brace is an AFO and it will not keep your son's foot corrected). You say you've got the " Ponseti " shoes and bar but since he's kicking and waking it leads me to believe that you actually have the Markell shoes and bar which are white open toe shoes with either a gold or red bar. Am I right? If so, the Ponseti FAB is actually a different brace (looks like little Birkenstock sandals with a bar). We affectionately call this the Ponseti/ FAB or PM for short and it is a very good brace with little of the problems you describe. Perhaps, you would want to look into this FAB instead of the Markell FAB (often referred to as the DBB) and it costs tons less than any AFO including the Wheaton brace. One word of caution, HANGAR tends to mark this brace (the PM's) up way too much and will quote you over $1300 when it actually costs about $380 incl. shipping if you order it directly from MD Orthopaedics. All you need is the script from the doc to get it from them and fitting is a breeze, you do not need to have an orthotist fit it for you. We can tell you everything you need to set it up at home yourself. hope this helps, Kori At 01:54 PM 7/30/2006, you wrote: >Hi there , 's mom, and all the other parents out there: >My son e just turned one. He has been wearing the Ponseti >shoes and bar since he was 5 months old. He still wakes up every 1-3 >hrs, depending on the night. He screams, cries, and kicks his legs >in frustration. It is extremely difficult to cope with, and no one >ever gets any sleep. We tried the crib, pack and play, pillows, >etc., but nothing has worked. e's PT suggested we ask our >ortho for a possible option. He suggested we try the Wheaton Brace >Company. They make an " ankle foot brace " (not correct term) that >does not require a bar. They will not be able to sell it directly to >you, so you'll have to go to HANGER Orthodics Company (they have >offices all over the country and are apparently the first, and >largest, orthodics company in the world). Our ortho does not like to >prescribe alternatives to the Ponseti shoes & bar, since e has >not had any peace since birth (between the castings, 2 surgeries, >and now the shoes and bar), he gave in to our please to try >something for the sake of everyone's sanity and especially for our >child's little sleep-deprived nervous system. So, ask your ortho if >he thinks this brace is right for your child. e's clubfeet >were very clubbed, and they're looking great now, so we're going to >give this alternative brace a shot. It's pricy (approx. $1000) but >most insurances will cover at least 80% of that. Let me know if you >have any other questions that I might be able to answer. Best wishes >and God Bless, Assunta -- <mailto:nuscadagon%40yahoo.com>nuscadagon@... > ><mailto:nosurgery4clubfoot%40yahoogroups.com>nosurgery4clubfoot \ , > " Tamera Felcoski " > wrote: > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year >and we > > still get up several times a night. I have also tried the pack'n >play, > > propping the feet, you name it, I've done it. We co-sleep with him >now > > and take turns getting up with him. Some nights are great and >others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will >be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@... 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't >get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I >don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and >getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Hi and everyone else, e already has wears the " birkenstocky " MD Orthopedics shoes and bar (Ponseti), but is simply unable to sleep with them due to the bar. We got that directly from MD Orthopedics and paid around $380,00. They are very comfi shoes but the bar is the problem. Hence our ortho. suggested yet another alternative shoe made by Wheaton Brace Company, (no bar). Apparently one cannot order it directly from Wheaton, but have to go through Hanger, and it costs around $1000 but luckily we only have to pay 20% of that as insurance covers the rest. To summarize: 1. MD Orthopedics: Ponseti " birkenstocky " shoes and bar: approx $380,00. 2. Wheaton (via Hanger) " shoes, no bar: approx $1000,00 (20% co-pay). Thanks, Assunta e 12+1/2 months BCF Alessandro wrote: Kori: I was just reading your response and I noticed the price that you said about the brace and the cost. I had NO idea that it was that expensive! I'll have to write down the MD Orthopedics. Dino 8mos BCF Re: Re: Sleeping with DDB Hi, I have one question to add to the other's who have posted (which I agree with, the Wheaton Brace is an AFO and it will not keep your son's foot corrected). You say you've got the " Ponseti " shoes and bar but since he's kicking and waking it leads me to believe that you actually have the Markell shoes and bar which are white open toe shoes with either a gold or red bar. Am I right? If so, the Ponseti FAB is actually a different brace (looks like little Birkenstock sandals with a bar). We affectionately call this the Ponseti/ FAB or PM for short and it is a very good brace with little of the problems you describe. Perhaps, you would want to look into this FAB instead of the Markell FAB (often referred to as the DBB) and it costs tons less than any AFO including the Wheaton brace. One word of caution, HANGAR tends to mark this brace (the PM's) up way too much and will quote you over $1300 when it actually costs about $380 incl. shipping if you order it directly from MD Orthopaedics. All you need is the script from the doc to get it from them and fitting is a breeze, you do not need to have an orthotist fit it for you. We can tell you everything you need to set it up at home yourself. hope this helps, Kori At 01:54 PM 7/30/2006, you wrote: >Hi there , 's mom, and all the other parents out there: >My son e just turned one. He has been wearing the Ponseti >shoes and bar since he was 5 months old. He still wakes up every 1-3 >hrs, depending on the night. He screams, cries, and kicks his legs >in frustration. It is extremely difficult to cope with, and no one >ever gets any sleep. We tried the crib, pack and play, pillows, >etc., but nothing has worked. e's PT suggested we ask our >ortho for a possible option. He suggested we try the Wheaton Brace >Company. They make an " ankle foot brace " (not correct term) that >does not require a bar. They will not be able to sell it directly to >you, so you'll have to go to HANGER Orthodics Company (they have >offices all over the country and are apparently the first, and >largest, orthodics company in the world). Our ortho does not like to >prescribe alternatives to the Ponseti shoes & bar, since e has >not had any peace since birth (between the castings, 2 surgeries, >and now the shoes and bar), he gave in to our please to try >something for the sake of everyone's sanity and especially for our >child's little sleep-deprived nervous system. So, ask your ortho if >he thinks this brace is right for your child. e's clubfeet >were very clubbed, and they're looking great now, so we're going to >give this alternative brace a shot. It's pricy (approx. $1000) but >most insurances will cover at least 80% of that. Let me know if you >have any other questions that I might be able to answer. Best wishes >and God Bless, Assunta -- <mailto:nuscadagon%40yahoo.com>nuscadagon@... > ><mailto:nosurgery4clubfoot%40yahoogroups.com>nosurgery4clubfoot \ , > " Tamera Felcoski " > wrote: > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year >and we > > still get up several times a night. I have also tried the pack'n >play, > > propping the feet, you name it, I've done it. We co-sleep with him >now > > and take turns getting up with him. Some nights are great and >others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will >be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@... 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't >get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I >don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and >getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Hi & , e goes to Dr. Herzenberg at Sinai in Baltimore. No advice from anyone - they say it's very different in every case, and all the kids react in their own " special " way. e likes to sleep on his stomach with his legs curled under him, and the bar impedes this, hence the discomfort and sleeplessness. We have tried everything, and finally Herzenberg suggested we try this Wheaton AFO. BUT...BUT...BUT...Did I understand you correctly that the MD Orthopedics FAB shoes and bar are the only way we'll prevent regression, and that the Wheaton AFO going to allow for regression? Please advise. I am so afraid his little feet go back in... Thanks, Assunta jennyandkelly wrote: Assunta, Have you ever shared with us who e's doctor is? Did he/she give you any advice as to why e might be having such a hard time with the brace? I agree with 's post that the Wheaton brace (or any standard AFO) is not designed to combat regression with a clubfoot, so I would love to see if we could help you troubleshoot e's current brace and see if there's just something about the set up or the correction of his foot/feet that is causing him some discomfort. The FAB is the best insurance you have against regression! Best wishes, & (3-16-00, lcf) > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year > and we > > still get up several times a night. I have also tried the pack'n > play, > > propping the feet, you name it, I've done it. We co-sleep with him > now > > and take turns getting up with him. Some nights are great and > others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will > be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I > don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and > getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Hello : I cannot thank you enough for your email. Your sincere understanding and priceless advice is so very appreciated. I will check the bar length again tomorrow, using your method instead of the tape measure, and try to cancel my Wheaton AFO order (hope it's not too late). Either way, I will abolsutely NOT USE IT. e's feet are looking great, and there is no way I will let them lose correction, or allow for any other muscular disorders to develop. When you have a minute I would appreciate hearing any additional " tips and tricks " you think we should try also. THANK YOU THANK YOU THANK YOU!!!! I'll keep you posted. Assunta wrote: Hi Assunta (and others who have been asking about the sleeping in the brace), First I would like to say that there are special circumstances that could warrant a different brace, however, I would have to agree with your physician when he did not want to prescribe the Wheaton brace. The Wheaton brace is not actually designed for clubfoot and can actually cause muscle atrophy which is the last thing you want in a clubfoot. I would also like to stress that if your child's feet have been properly corrected, the traditional brace (Markell shoes and bar) or the Ponseti/ (P/M) brace will work. I understand that you may be at your wits end with the brace (probably wanting to chuck the whole thing out the window), and I don't want to sound unfeeling, far from it, I can definitely commiserate with what you are going through. I am wondering if we have ever sat down and done any troubleshooting with you to try to figure out what it is that is making e so unhappy in his brace. The #1 thing that causes what you are describing is a bar that is too short. And I'm sure you've seen that bit of advice here on the board before, but I just thought I would mention it again. There have been numerous times when a mom has said " yes, I have measured, his bar is as wide as his shoulders " , but if pressed for more details we discover that it is still not wide enough, and that was what was causing the baby to be so cranky all along. A lot of people will use a tape measure, but this is NOT a great wasy to do it, it works for some people because their particular child is not as sensitive to the width of the bar. The best way that we have found to measure this is to take the brace with the shoes on it, and set it down on the floor, shoes face up, then lay the child with his shoulders situated between the heels of the shoes. His shoulders should fit between the heels of the shoes without being scrunched up at all, in fact, a little bit of space on either side is okay. If his shoulders do not fit in this way that bar is too short. There are lots of other tips and tricks that we can walk through with you to discover what is going on that is making him so uncomfortable. I just can't caution you enough on the use of the Wheaton brace, it sounds like you've come so far, you said e's feet look great now, I hate the thought of him losing correction (muscle atrophy or shortening of the tendons/muscles) now. We will be happy to help you troubleshoot his brace set up and shoes and see what we can find that is causing him so much trouble in the P/M's. HTH, Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12hrs/day) > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year > and we > > still get up several times a night. I have also tried the pack'n > play, > > propping the feet, you name it, I've done it. We co-sleep with him > now > > and take turns getting up with him. Some nights are great and > others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will > be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I > don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and > getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs.Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Assunta, e should be able to sleep on his tummy with his legs underneath him if the bar is wide enough. They kind of curl up with their bottom up in the air and the knees bent. I have also seen pictures of kids sleeping in a " twisted " position with their tummies down and twisting at the hips with the one foot up in the air resting on the side of the bed. I saw that per 's post you were going to check the length of his bar. This is a good starting point for troubleshooting. Also, you'll want to check the angle that the shoes are at (dorsiflexion). What does Herzenberg say about e's correction? Is he happy with the correction? Did he indicate that e has any special conditions (complex/atypical, cavus) or concerns? To reiterate, the reason that an AFO will not hold the correction is because it is impossible for an AFO to hold the foot at an outward angle (abduction) and this is necessary to fight the natural tendencies of the tendons/ligaments to tighten back up. With the FAB (either the or Markell shoes), this is accomplished by the mounting of the shoe on the bar. This is why even kids who only have one clubfoot (unilateral) have to wear the bar and not just a brace on their one foot. The bar facilitates the abduction angle and keeps the toes pointed upward, stretching the Achilles tendon (dorsiflexion) as well. The overcorrection of the foot will eventually pull back in to neutral over time. (this is very gradual) It's common for parents to be concerned with their young toddlers (1-2 yrs) walking with their foot pointed outward (sometimes referred to as " Charlie Chaplin " walking, or duck-footed), but gradually, the toes will point straight forward and the overcorrection will not be noticeable. I hope this helps! & (3-16-00, lcf) > > > > > > Hi , > > > > > > I know exactly what your talking about. My son is almost a year > > and we > > > still get up several times a night. I have also tried the pack'n > > play, > > > propping the feet, you name it, I've done it. We co-sleep with > him > > now > > > and take turns getting up with him. Some nights are great and > > others are > > > terrible. As has gotten stronger, the issues have seemed > to > > > increase. I guess I have just come to the realization that I > will > > be > > > sleep deprived for some time. I am also a working mom and teach > > > teenagers. Sorry I haven't got any great ideas. > > > 's mom > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > Hi everyone. My 4 month old son started wearing the brace about > 6 > > > weeks ago. It took him a week to get used to it, but is totally > > > comfortable during the day. He's even rolling over with it > now! > > > > > > The problems begin at night. Since we got the brace, he's had a > > > horrible time sleeping. He wakes up every 2 or 3 hours and > can't > > get > > > back to sleep. I've tried putting him in the pack 'n play and > > > propping his feet up with a pillow. Nothing seems to help. I > > don't > > > mind getting up with him, but I have to go back to work in 3 > weeks > > > (which i'm completely distraught about to begin with). and > > getting up > > > at 5:30 every morning to teach teenagers is not exactly a bowl > of > > > cherries to begin with. > > > > > > I'm willing to try anything at this point! > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Assunta, One more thing- there is a document in the files section called " FAB.doc " . This is the tips and tricks document that people often refer to. Have you seen it? You can also download it from the bracing section at this site: http://members.tripod.com/ponseti_links-ivil Hope this helps- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Hi, Assunta, I'm sorry I am coming in this conversation, too. I don't want you to feel like we are all jumping at you. I understand what you are saying about e being unable to sleep because of the bar. I know how frustrating it is for a parent and the child to not get enough sleep. However, I have to agree with the parents here who have mentioned the downfalls of the Wheaton Brace. The brace itself sounds like an easier alternative because it doesn't have the bar. But it does absolutely nothing to hold correction for the clubfoot. It's almost the same as not even using anything at all. This will only lead to relapse. I really believe that perhaps the issue e has been having with the Ponseti brace could be the length of the bar. Have you tried to make the bar longer to see if that works? My son is almost 9 months old and he had begun to get very fussy at night about a week ago. I kept thinking it had to do with him teething and I didn't pay attention to the bar. It finally occurred to me that it could be the bar and I lengthened it. It is now about an inch or two longer than shoulder-width and he is perfectly peaceful again at night. He likes the bar even longer than shoulder-width. Assunta, before you decide to use the Wheaton Brace (which I very strongly discourage) please try to adjust his bar. If that doesn't help, I am inclined to think that maybe his foot is not completely corrected. If that is the case, a second opinion would be in order. He is still young enough to get properly corrected. Please take into consideration what these parents here have mentioned, including myself, and do not consider the Wheaton Brace. Clubfoot treatment is not always an easy thing to deal with, but we have to try the best for our children, knowing we have done everything possible to help them lead normal lives. assunta nusca dagon wrote: Hi and everyone else, e already has wears the " birkenstocky " MD Orthopedics shoes and bar (Ponseti), but is simply unable to sleep with them due to the bar. We got that directly from MD Orthopedics and paid around $380,00. They are very comfi shoes but the bar is the problem. Hence our ortho. suggested yet another alternative shoe made by Wheaton Brace Company, (no bar). Apparently one cannot order it directly from Wheaton, but have to go through Hanger, and it costs around $1000 but luckily we only have to pay 20% of that as insurance covers the rest. To summarize: 1. MD Orthopedics: Ponseti " birkenstocky " shoes and bar: approx $380,00. 2. Wheaton (via Hanger) " shoes, no bar: approx $1000,00 (20% co-pay). Thanks, Assunta e 12+1/2 months BCF Alessandro wrote: Kori: I was just reading your response and I noticed the price that you said about the brace and the cost. I had NO idea that it was that expensive! I'll have to write down the MD Orthopedics. Dino 8mos BCF Re: Re: Sleeping with DDB Hi, I have one question to add to the other's who have posted (which I agree with, the Wheaton Brace is an AFO and it will not keep your son's foot corrected). You say you've got the " Ponseti " shoes and bar but since he's kicking and waking it leads me to believe that you actually have the Markell shoes and bar which are white open toe shoes with either a gold or red bar. Am I right? If so, the Ponseti FAB is actually a different brace (looks like little Birkenstock sandals with a bar). We affectionately call this the Ponseti/ FAB or PM for short and it is a very good brace with little of the problems you describe. Perhaps, you would want to look into this FAB instead of the Markell FAB (often referred to as the DBB) and it costs tons less than any AFO including the Wheaton brace. One word of caution, HANGAR tends to mark this brace (the PM's) up way too much and will quote you over $1300 when it actually costs about $380 incl. shipping if you order it directly from MD Orthopaedics. All you need is the script from the doc to get it from them and fitting is a breeze, you do not need to have an orthotist fit it for you. We can tell you everything you need to set it up at home yourself. hope this helps, Kori At 01:54 PM 7/30/2006, you wrote: >Hi there , 's mom, and all the other parents out there: >My son e just turned one. He has been wearing the Ponseti >shoes and bar since he was 5 months old. He still wakes up every 1-3 >hrs, depending on the night. He screams, cries, and kicks his legs >in frustration. It is extremely difficult to cope with, and no one >ever gets any sleep. We tried the crib, pack and play, pillows, >etc., but nothing has worked. e's PT suggested we ask our >ortho for a possible option. He suggested we try the Wheaton Brace >Company. They make an " ankle foot brace " (not correct term) that >does not require a bar. They will not be able to sell it directly to >you, so you'll have to go to HANGER Orthodics Company (they have >offices all over the country and are apparently the first, and >largest, orthodics company in the world). Our ortho does not like to >prescribe alternatives to the Ponseti shoes & bar, since e has >not had any peace since birth (between the castings, 2 surgeries, >and now the shoes and bar), he gave in to our please to try >something for the sake of everyone's sanity and especially for our >child's little sleep-deprived nervous system. So, ask your ortho if >he thinks this brace is right for your child. e's clubfeet >were very clubbed, and they're looking great now, so we're going to >give this alternative brace a shot. It's pricy (approx. $1000) but >most insurances will cover at least 80% of that. Let me know if you >have any other questions that I might be able to answer. Best wishes >and God Bless, Assunta -- <mailto:nuscadagon%40yahoo.com>nuscadagon@... > ><mailto:nosurgery4clubfoot%40yahoogroups.com>nosurgery4clubfoot \ , > " Tamera Felcoski " > wrote: > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year >and we > > still get up several times a night. I have also tried the pack'n >play, > > propping the feet, you name it, I've done it. We co-sleep with him >now > > and take turns getting up with him. Some nights are great and >others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will >be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@... 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't >get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I >don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and >getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Barring bar length, some kids just take a while to figure out how to sleep in the brace. I've seen my kids sleep in every position imaginable and I think, " How in the world? " but there they are twisted up like some pretzel sawing logs sound asleep.... on their back with the bar on their forehead, face going one direction, feet going the other, on their belly with the feet up in the air, on the belly with knees tucked under the belly, on their back with a shoe next to their ear.... Blankets pose a problem for us (and others). The child becoming tangled in the blanket, waking up from it. In that case either skip blanket use by wearing warmer pajamas, or use a sleep sack in place of a blanket. I also highly recommend something less obvious: a consistant bed time based on a bed time routine. Figuring out a nightly routine that leads up to bed time helps children sleep, because their brain can gear down towards the goal it knows is coming each night. It's incredible how much better a kid will sleep if put down to a routine each night. Garrison is nearly 5 months old now - I don't " put him to bed " but each night about 9:00 I change his shirt and diaper, then I can nurse him and he'll fall right asleep. I lay him on the sofa until I go upstairs to bed, then put him in his crib beside me. That's his baby routine. The older boys have their routines and they all go to bed and sleep soundly with out fuss. Maybe some of that will help. ee Visit Me On The Web For Clubfoot Information! http://www.wildliferevivaltaxidermy.com/ShawsPage.html Re: Re: Sleeping with DDB Hi, I have one question to add to the other's who have posted (which I agree with, the Wheaton Brace is an AFO and it will not keep your son's foot corrected). You say you've got the " Ponseti " shoes and bar but since he's kicking and waking it leads me to believe that you actually have the Markell shoes and bar which are white open toe shoes with either a gold or red bar. Am I right? If so, the Ponseti FAB is actually a different brace (looks like little Birkenstock sandals with a bar). We affectionately call this the Ponseti/ FAB or PM for short and it is a very good brace with little of the problems you describe. Perhaps, you would want to look into this FAB instead of the Markell FAB (often referred to as the DBB) and it costs tons less than any AFO including the Wheaton brace. One word of caution, HANGAR tends to mark this brace (the PM's) up way too much and will quote you over $1300 when it actually costs about $380 incl. shipping if you order it directly from MD Orthopaedics. All you need is the script from the doc to get it from them and fitting is a breeze, you do not need to have an orthotist fit it for you. We can tell you everything you need to set it up at home yourself. hope this helps, Kori At 01:54 PM 7/30/2006, you wrote: >Hi there , 's mom, and all the other parents out there: >My son e just turned one. He has been wearing the Ponseti >shoes and bar since he was 5 months old. He still wakes up every 1-3 >hrs, depending on the night. He screams, cries, and kicks his legs >in frustration. It is extremely difficult to cope with, and no one >ever gets any sleep. We tried the crib, pack and play, pillows, >etc., but nothing has worked. e's PT suggested we ask our >ortho for a possible option. He suggested we try the Wheaton Brace >Company. They make an " ankle foot brace " (not correct term) that >does not require a bar. They will not be able to sell it directly to >you, so you'll have to go to HANGER Orthodics Company (they have >offices all over the country and are apparently the first, and >largest, orthodics company in the world). Our ortho does not like to >prescribe alternatives to the Ponseti shoes & bar, since e has >not had any peace since birth (between the castings, 2 surgeries, >and now the shoes and bar), he gave in to our please to try >something for the sake of everyone's sanity and especially for our >child's little sleep-deprived nervous system. So, ask your ortho if >he thinks this brace is right for your child. e's clubfeet >were very clubbed, and they're looking great now, so we're going to >give this alternative brace a shot. It's pricy (approx. $1000) but >most insurances will cover at least 80% of that. Let me know if you >have any other questions that I might be able to answer. Best wishes >and God Bless, Assunta -- <mailto:nuscadagon%40yahoo.com>nuscadagon@... > ><mailto:nosurgery4clubfoot%40yahoogroups.com>nosurgery4clubfoot \ , > " Tamera Felcoski " > wrote: > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year >and we > > still get up several times a night. I have also tried the pack'n >play, > > propping the feet, you name it, I've done it. We co-sleep with him >now > > and take turns getting up with him. Some nights are great and >others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will >be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@... 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't >get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I >don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and >getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 I think the Wheaton brace is a KAFO, (knee-ankle foot orthotic). A KAFO, if set up correctly, *could* potentially hold the outward rotation since the knee is involved in the brace (a AFO- below the knee- cannot hold abduction). I don't know if the standard Wheaton braces are set up for the 60-70° abduction angle (I doubt it- but I haven't really researched it personally) or if a custom-made KAFO would have to be made in order to be Ponseti method compliant. The downside to KAFOs is that there is limited mobility so it could promote calf muscle atrophy or weakness. (I also don't like the sweatiness and skin issues that can come with wearing the plastic AFO/KAFO type brace- but that's just my own bias based on personal experiences) HTH, > > > > > > Hi , > > > > > > I know exactly what your talking about. My son is almost a year > >and we > > > still get up several times a night. I have also tried the pack'n > >play, > > > propping the feet, you name it, I've done it. We co-sleep with him > >now > > > and take turns getting up with him. Some nights are great and > >others are > > > terrible. As has gotten stronger, the issues have seemed to > > > increase. I guess I have just come to the realization that I will > >be > > > sleep deprived for some time. I am also a working mom and teach > > > teenagers. Sorry I haven't got any great ideas. > > > 's mom > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > Hi everyone. My 4 month old son started wearing the brace about 6 > > > weeks ago. It took him a week to get used to it, but is totally > > > comfortable during the day. He's even rolling over with it now! > > > > > > The problems begin at night. Since we got the brace, he's had a > > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > >get > > > back to sleep. I've tried putting him in the pack 'n play and > > > propping his feet up with a pillow. Nothing seems to help. I > >don't > > > mind getting up with him, but I have to go back to work in 3 weeks > > > (which i'm completely distraught about to begin with). and > >getting up > > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > > cherries to begin with. > > > > > > I'm willing to try anything at this point! > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Assunta, Do keep us posted. Let us know what comes of measuring the bar and any adjustments you might make. It is really surprising the number of physicians or orthotists we are seeing who are prescribing or adjusting the bar too short. There are other things that could be going on with the shoes and bar but since you are using the P/M's you would most likely notice red marks or some other indication of an improper fit. > > > > > > Hi , > > > > > > I know exactly what your talking about. My son is almost a year > > and we > > > still get up several times a night. I have also tried the pack'n > > play, > > > propping the feet, you name it, I've done it. We co-sleep with him > > now > > > and take turns getting up with him. Some nights are great and > > others are > > > terrible. As has gotten stronger, the issues have seemed to > > > increase. I guess I have just come to the realization that I will > > be > > > sleep deprived for some time. I am also a working mom and teach > > > teenagers. Sorry I haven't got any great ideas. > > > 's mom > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > Hi everyone. My 4 month old son started wearing the brace about 6 > > > weeks ago. It took him a week to get used to it, but is totally > > > comfortable during the day. He's even rolling over with it now! > > > > > > The problems begin at night. Since we got the brace, he's had a > > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > > get > > > back to sleep. I've tried putting him in the pack 'n play and > > > propping his feet up with a pillow. Nothing seems to help. I > > don't > > > mind getting up with him, but I have to go back to work in 3 weeks > > > (which i'm completely distraught about to begin with). and > > getting up > > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > > cherries to begin with. > > > > > > I'm willing to try anything at this point! > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > > > > --------------------------------- > Yahoo! Music Unlimited - Access over 1 million songs.Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Just to clarify, there are two components to the Wheaton brace, an AFO (regular plastic molded, to the upper calf/knee), and an additional component which makes it a KAFO. The AFO brace alone, as has been mentioned, can't hold the outward rotation of a clubfoot corrected with the Ponseti method. The KAFO can hold the outward rotation but it actually holds the foot at 0 degrees flexion and because it holds the leg at a 90 degree angle it can cause shortening of the tendons as well as muscle atrophy. > > > > > > > > Hi , > > > > > > > > I know exactly what your talking about. My son is almost a year > > >and we > > > > still get up several times a night. I have also tried the > pack'n > > >play, > > > > propping the feet, you name it, I've done it. We co-sleep with > him > > >now > > > > and take turns getting up with him. Some nights are great and > > >others are > > > > terrible. As has gotten stronger, the issues have > seemed to > > > > increase. I guess I have just come to the realization that I > will > > >be > > > > sleep deprived for some time. I am also a working mom and teach > > > > teenagers. Sorry I haven't got any great ideas. > > > > 's mom > > > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > > Hi everyone. My 4 month old son started wearing the brace > about 6 > > > > weeks ago. It took him a week to get used to it, but is totally > > > > comfortable during the day. He's even rolling over with it now! > > > > > > > > The problems begin at night. Since we got the brace, he's had a > > > > horrible time sleeping. He wakes up every 2 or 3 hours and > can't > > >get > > > > back to sleep. I've tried putting him in the pack 'n play and > > > > propping his feet up with a pillow. Nothing seems to help. I > > >don't > > > > mind getting up with him, but I have to go back to work in 3 > weeks > > > > (which i'm completely distraught about to begin with). and > > >getting up > > > > at 5:30 every morning to teach teenagers is not exactly a bowl > of > > > > cherries to begin with. > > > > > > > > I'm willing to try anything at this point! > > > > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Thanks for the info Assunta! Dino 11/12/05 BCF Re: Re: Sleeping with DDB Hi, I have one question to add to the other's who have posted (which I agree with, the Wheaton Brace is an AFO and it will not keep your son's foot corrected). You say you've got the " Ponseti " shoes and bar but since he's kicking and waking it leads me to believe that you actually have the Markell shoes and bar which are white open toe shoes with either a gold or red bar. Am I right? If so, the Ponseti FAB is actually a different brace (looks like little Birkenstock sandals with a bar). We affectionately call this the Ponseti/ FAB or PM for short and it is a very good brace with little of the problems you describe. Perhaps, you would want to look into this FAB instead of the Markell FAB (often referred to as the DBB) and it costs tons less than any AFO including the Wheaton brace. One word of caution, HANGAR tends to mark this brace (the PM's) up way too much and will quote you over $1300 when it actually costs about $380 incl. shipping if you order it directly from MD Orthopaedics. All you need is the script from the doc to get it from them and fitting is a breeze, you do not need to have an orthotist fit it for you. We can tell you everything you need to set it up at home yourself. hope this helps, Kori At 01:54 PM 7/30/2006, you wrote: >Hi there , 's mom, and all the other parents out there: >My son e just turned one. He has been wearing the Ponseti >shoes and bar since he was 5 months old. He still wakes up every 1-3 >hrs, depending on the night. He screams, cries, and kicks his legs >in frustration. It is extremely difficult to cope with, and no one >ever gets any sleep. We tried the crib, pack and play, pillows, >etc., but nothing has worked. e's PT suggested we ask our >ortho for a possible option. He suggested we try the Wheaton Brace >Company. They make an " ankle foot brace " (not correct term) that >does not require a bar. They will not be able to sell it directly to >you, so you'll have to go to HANGER Orthodics Company (they have >offices all over the country and are apparently the first, and >largest, orthodics company in the world). Our ortho does not like to >prescribe alternatives to the Ponseti shoes & bar, since e has >not had any peace since birth (between the castings, 2 surgeries, >and now the shoes and bar), he gave in to our please to try >something for the sake of everyone's sanity and especially for our >child's little sleep-deprived nervous system. So, ask your ortho if >he thinks this brace is right for your child. e's clubfeet >were very clubbed, and they're looking great now, so we're going to >give this alternative brace a shot. It's pricy (approx. $1000) but >most insurances will cover at least 80% of that. Let me know if you >have any other questions that I might be able to answer. Best wishes >and God Bless, Assunta -- <mailto:nuscadagon%40yahoo.com>nuscadagon@... > ><mailto:nosurgery4clubfoot%40yahoogroups.com>nosurgery4clubfoot \ , > " Tamera Felcoski " > wrote: > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year >and we > > still get up several times a night. I have also tried the pack'n >play, > > propping the feet, you name it, I've done it. We co-sleep with him >now > > and take turns getting up with him. Some nights are great and >others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will >be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@... 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't >get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I >don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and >getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Thank you all for the responses and advice. Logan has had a couple of good nights lately and I hope it's the beginning of a new pattern...but i'm not holding my breath! We're going for a check up with our orthopedist tomorrow. Maybe he'll have some words of wisdom. If I find something that works, I'll be sure to pass it on. > > > > > > > > Hi , > > > > > > > > I know exactly what your talking about. My son is almost a year > > > and we > > > > still get up several times a night. I have also tried the pack'n > > > play, > > > > propping the feet, you name it, I've done it. We co-sleep with him > > > now > > > > and take turns getting up with him. Some nights are great and > > > others are > > > > terrible. As has gotten stronger, the issues have seemed to > > > > increase. I guess I have just come to the realization that I will > > > be > > > > sleep deprived for some time. I am also a working mom and teach > > > > teenagers. Sorry I haven't got any great ideas. > > > > 's mom > > > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > > Hi everyone. My 4 month old son started wearing the brace about 6 > > > > weeks ago. It took him a week to get used to it, but is totally > > > > comfortable during the day. He's even rolling over with it now! > > > > > > > > The problems begin at night. Since we got the brace, he's had a > > > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > > > get > > > > back to sleep. I've tried putting him in the pack 'n play and > > > > propping his feet up with a pillow. Nothing seems to help. I > > > don't > > > > mind getting up with him, but I have to go back to work in 3 weeks > > > > (which i'm completely distraught about to begin with). and > > > getting up > > > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > > > cherries to begin with. > > > > > > > > I'm willing to try anything at this point! > > > > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > Yahoo! Music Unlimited - Access over 1 million songs.Try it free. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Hey ee- have you figured out a way to takepictures of these positions without waking your boys up? My david is such a contortionist when he sleeps-my husband and I often wonder-should we move him? My mantra is let sleeping dogs lie. However, i would love to take pictures of these positions to show him and anyone else for that matter-just worried I would wake him with the flash. Its amazing how they can twist their bodies around. Hope you are keeping cool in OK! kathleen mom to david the contortionist bcf fab 12/7 and daughter edd 9/1/06(and hopefully not any sooner!!) > > > > > > Hi , > > > > > > I know exactly what your talking about. My son is almost a year > >and we > > > still get up several times a night. I have also tried the pack'n > >play, > > > propping the feet, you name it, I've done it. We co-sleep with him > >now > > > and take turns getting up with him. Some nights are great and > >others are > > > terrible. As has gotten stronger, the issues have seemed to > > > increase. I guess I have just come to the realization that I will > >be > > > sleep deprived for some time. I am also a working mom and teach > > > teenagers. Sorry I haven't got any great ideas. > > > 's mom > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > Hi everyone. My 4 month old son started wearing the brace about 6 > > > weeks ago. It took him a week to get used to it, but is totally > > > comfortable during the day. He's even rolling over with it now! > > > > > > The problems begin at night. Since we got the brace, he's had a > > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > >get > > > back to sleep. I've tried putting him in the pack 'n play and > > > propping his feet up with a pillow. Nothing seems to help. I > >don't > > > mind getting up with him, but I have to go back to work in 3 weeks > > > (which i'm completely distraught about to begin with). and > >getting up > > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > > cherries to begin with. > > > > > > I'm willing to try anything at this point! > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Hi there Moms, THANK YOU to you all for responding to me regarding the AFO and how it is NOT GOOD for clubfeet. I will absolutely not be using it, and will be sticking to the Ponseti shoes and bar. I appreciate all your support. This group is a Godsend! Assunta Alessandro wrote: Thanks for the info Assunta! Dino 11/12/05 BCF Re: Re: Sleeping with DDB Hi, I have one question to add to the other's who have posted (which I agree with, the Wheaton Brace is an AFO and it will not keep your son's foot corrected). You say you've got the " Ponseti " shoes and bar but since he's kicking and waking it leads me to believe that you actually have the Markell shoes and bar which are white open toe shoes with either a gold or red bar. Am I right? If so, the Ponseti FAB is actually a different brace (looks like little Birkenstock sandals with a bar). We affectionately call this the Ponseti/ FAB or PM for short and it is a very good brace with little of the problems you describe. Perhaps, you would want to look into this FAB instead of the Markell FAB (often referred to as the DBB) and it costs tons less than any AFO including the Wheaton brace. One word of caution, HANGAR tends to mark this brace (the PM's) up way too much and will quote you over $1300 when it actually costs about $380 incl. shipping if you order it directly from MD Orthopaedics. All you need is the script from the doc to get it from them and fitting is a breeze, you do not need to have an orthotist fit it for you. We can tell you everything you need to set it up at home yourself. hope this helps, Kori At 01:54 PM 7/30/2006, you wrote: >Hi there , 's mom, and all the other parents out there: >My son e just turned one. He has been wearing the Ponseti >shoes and bar since he was 5 months old. He still wakes up every 1-3 >hrs, depending on the night. He screams, cries, and kicks his legs >in frustration. It is extremely difficult to cope with, and no one >ever gets any sleep. We tried the crib, pack and play, pillows, >etc., but nothing has worked. e's PT suggested we ask our >ortho for a possible option. He suggested we try the Wheaton Brace >Company. They make an " ankle foot brace " (not correct term) that >does not require a bar. They will not be able to sell it directly to >you, so you'll have to go to HANGER Orthodics Company (they have >offices all over the country and are apparently the first, and >largest, orthodics company in the world). Our ortho does not like to >prescribe alternatives to the Ponseti shoes & bar, since e has >not had any peace since birth (between the castings, 2 surgeries, >and now the shoes and bar), he gave in to our please to try >something for the sake of everyone's sanity and especially for our >child's little sleep-deprived nervous system. So, ask your ortho if >he thinks this brace is right for your child. e's clubfeet >were very clubbed, and they're looking great now, so we're going to >give this alternative brace a shot. It's pricy (approx. $1000) but >most insurances will cover at least 80% of that. Let me know if you >have any other questions that I might be able to answer. Best wishes >and God Bless, Assunta -- <mailto:nuscadagon%40yahoo.com>nuscadagon@... > ><mailto:nosurgery4clubfoot%40yahoogroups.com>nosurgery4clubfoot \ , > " Tamera Felcoski " > wrote: > > > > Hi , > > > > I know exactly what your talking about. My son is almost a year >and we > > still get up several times a night. I have also tried the pack'n >play, > > propping the feet, you name it, I've done it. We co-sleep with him >now > > and take turns getting up with him. Some nights are great and >others are > > terrible. As has gotten stronger, the issues have seemed to > > increase. I guess I have just come to the realization that I will >be > > sleep deprived for some time. I am also a working mom and teach > > teenagers. Sorry I haven't got any great ideas. > > 's mom > > > > >>> mmg174@... 07/28/06 11:49 AM >>> > > Hi everyone. My 4 month old son started wearing the brace about 6 > > weeks ago. It took him a week to get used to it, but is totally > > comfortable during the day. He's even rolling over with it now! > > > > The problems begin at night. Since we got the brace, he's had a > > horrible time sleeping. He wakes up every 2 or 3 hours and can't >get > > back to sleep. I've tried putting him in the pack 'n play and > > propping his feet up with a pillow. Nothing seems to help. I >don't > > mind getting up with him, but I have to go back to work in 3 weeks > > (which i'm completely distraught about to begin with). and >getting up > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > cherries to begin with. > > > > I'm willing to try anything at this point! > > > > > > (Logan 4 months. Left clubfoot) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Thank you so much for the info. I will NOT be using the Wheaton brace. Assunta wrote: Just to clarify, there are two components to the Wheaton brace, an AFO (regular plastic molded, to the upper calf/knee), and an additional component which makes it a KAFO. The AFO brace alone, as has been mentioned, can't hold the outward rotation of a clubfoot corrected with the Ponseti method. The KAFO can hold the outward rotation but it actually holds the foot at 0 degrees flexion and because it holds the leg at a 90 degree angle it can cause shortening of the tendons as well as muscle atrophy. > > > > > > > > Hi , > > > > > > > > I know exactly what your talking about. My son is almost a year > > >and we > > > > still get up several times a night. I have also tried the > pack'n > > >play, > > > > propping the feet, you name it, I've done it. We co-sleep with > him > > >now > > > > and take turns getting up with him. Some nights are great and > > >others are > > > > terrible. As has gotten stronger, the issues have > seemed to > > > > increase. I guess I have just come to the realization that I > will > > >be > > > > sleep deprived for some time. I am also a working mom and teach > > > > teenagers. Sorry I haven't got any great ideas. > > > > 's mom > > > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > > Hi everyone. My 4 month old son started wearing the brace > about 6 > > > > weeks ago. It took him a week to get used to it, but is totally > > > > comfortable during the day. He's even rolling over with it now! > > > > > > > > The problems begin at night. Since we got the brace, he's had a > > > > horrible time sleeping. He wakes up every 2 or 3 hours and > can't > > >get > > > > back to sleep. I've tried putting him in the pack 'n play and > > > > propping his feet up with a pillow. Nothing seems to help. I > > >don't > > > > mind getting up with him, but I have to go back to work in 3 > weeks > > > > (which i'm completely distraught about to begin with). and > > >getting up > > > > at 5:30 every morning to teach teenagers is not exactly a bowl > of > > > > cherries to begin with. > > > > > > > > I'm willing to try anything at this point! > > > > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Ciao , Thank you SO MUCH for all the info. I measured the bar last night, made what seems like a massive adjustment, and e only woke up once during the night for some milk, and went back to sleep. THANK YOU SO MUCH. I hope this is the first of many similar nights. I cannot tell you how relieved I am to be a part of this group -- being in contact with so many parents who understand what we are going through, and able to offer so much support and information, is really priceless! I'll keep you posted, and thanks again. Assunta PS: we're melting here in rochester, NY -- it's been over 105 degrees (81 dewpoint) for a few days now...hope you're seeing better weather! wrote: Assunta, Do keep us posted. Let us know what comes of measuring the bar and any adjustments you might make. It is really surprising the number of physicians or orthotists we are seeing who are prescribing or adjusting the bar too short. There are other things that could be going on with the shoes and bar but since you are using the P/M's you would most likely notice red marks or some other indication of an improper fit. > > > > > > Hi , > > > > > > I know exactly what your talking about. My son is almost a year > > and we > > > still get up several times a night. I have also tried the pack'n > > play, > > > propping the feet, you name it, I've done it. We co-sleep with him > > now > > > and take turns getting up with him. Some nights are great and > > others are > > > terrible. As has gotten stronger, the issues have seemed to > > > increase. I guess I have just come to the realization that I will > > be > > > sleep deprived for some time. I am also a working mom and teach > > > teenagers. Sorry I haven't got any great ideas. > > > 's mom > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > Hi everyone. My 4 month old son started wearing the brace about 6 > > > weeks ago. It took him a week to get used to it, but is totally > > > comfortable during the day. He's even rolling over with it now! > > > > > > The problems begin at night. Since we got the brace, he's had a > > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > > get > > > back to sleep. I've tried putting him in the pack 'n play and > > > propping his feet up with a pillow. Nothing seems to help. I > > don't > > > mind getting up with him, but I have to go back to work in 3 weeks > > > (which i'm completely distraught about to begin with). and > > getting up > > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > > cherries to begin with. > > > > > > I'm willing to try anything at this point! > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > > > > --------------------------------- > Yahoo! Music Unlimited - Access over 1 million songs.Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 YES!!! I'll be keeping my fingers crossed for you and e! > > > > > > > > Hi , > > > > > > > > I know exactly what your talking about. My son is almost a year > > > and we > > > > still get up several times a night. I have also tried the pack'n > > > play, > > > > propping the feet, you name it, I've done it. We co-sleep with him > > > now > > > > and take turns getting up with him. Some nights are great and > > > others are > > > > terrible. As has gotten stronger, the issues have seemed to > > > > increase. I guess I have just come to the realization that I will > > > be > > > > sleep deprived for some time. I am also a working mom and teach > > > > teenagers. Sorry I haven't got any great ideas. > > > > 's mom > > > > > > > > >>> mmg174@ 07/28/06 11:49 AM >>> > > > > Hi everyone. My 4 month old son started wearing the brace about 6 > > > > weeks ago. It took him a week to get used to it, but is totally > > > > comfortable during the day. He's even rolling over with it now! > > > > > > > > The problems begin at night. Since we got the brace, he's had a > > > > horrible time sleeping. He wakes up every 2 or 3 hours and can't > > > get > > > > back to sleep. I've tried putting him in the pack 'n play and > > > > propping his feet up with a pillow. Nothing seems to help. I > > > don't > > > > mind getting up with him, but I have to go back to work in 3 weeks > > > > (which i'm completely distraught about to begin with). and > > > getting up > > > > at 5:30 every morning to teach teenagers is not exactly a bowl of > > > > cherries to begin with. > > > > > > > > I'm willing to try anything at this point! > > > > > > > > > > > > (Logan 4 months. Left clubfoot) > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > Yahoo! Music Unlimited - Access over 1 million songs.Try it free. > > > > Quote Link to comment Share on other sites More sharing options...
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