Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Hello there... I am an infrequent poster to this group but I do read a lot and it has helped me lots of times. My son Sam was born in May 2003 with bilateral clubfoot and he has been treated since his birth by Dr. Scher in New York (I just read about someone else being treated by Feldman, his colleague). Sam went through four sets of casts and had a tenotomy on his right foot but not his left. On Sam's first day of life we also found that he had bilaterally dislocated hips. We tried the Pavlik harness and a closed reduction procedure to fix his hips but nothing worked. After 3 or 4 months, we talked about scheduling an open reduction for his hips when we saw that his right foot, after being out of the cast for a month and in the DBB, had regressed somewhat, and we made an appointment to see a neurologist. In fact, it does turn out that Sam has a spinal cord defect of some kind. The radiologists describe it as a " marked thinning " of the lumbar region of the cord. Im not sure that Sam can feel anything below his waist or his knees, especially on his right side. He certainly does not move his ankles or knees on either side very much. All the doctors (at this point we have the orthopedist, neurologist, urologist, geneticist, pediatrician, physical therapist) say it REMINDS them of spina bifida but, given that Sam's vertebrae are all closed, isnt. The prognosis is spina-bifida-like: wheelchair or braces/crutches. so that sucks. I was wondering if anybody on this site has heard of anything like this happening to others. I realize that at some point the clubfeet become an ancillary problem and may no longer subscribe here, but I wanted to check. Thank you in advance for your replies. Best Regards, Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 I realize that at some point the clubfeet become an > ancillary problem and > may no longer subscribe here, but I wanted to check. I'm not understanding this sentence. I think that sam was born with clubfoot and that should make you able to be a member here. PLease help me on this understanding. Also I have not heard of any kids with what Sam has. I live in a very small town and the word clubfoot is a very strange word and people tend to shy away. That is why I have joined this group and I feel that no matter if you child has just clubfoot or was born with other things to ( like my son ) we should welcome everyone here. My son see a therapist 2 a week and i could ask her some info on this if you would like. I hope all gose well for you son Sam and for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Bill, I am sorry that don't have any specific info for you, but do know that I have heard of several clubfoot children here who have been investigated for " dimples " at the small of their backs, which I understand sometimes indicates a spinal cord issue. I don't recall if any of those children have had any problems or limitations related to it, but I hope that if any of them see your message they will respond. I'm sure it's been an emotional and worrisome time, as these extra concerns have been identified and their implications. Although I don't have any specific help for you, I wanted to say that no matter what you find out about other issues you may be dealing with .. of course you are still just as much a part of this group and we sincerely hope that you'll stay! Please keep us posted on what you hear next.. I will be hoping for the very best outcome for Sam and for more optimistic news as you proceed along the investigations you have ahead.. Hopefully he'll defy the prognosis and surprise everyone.. so often I hear of children doing just that. Take care, and very best wishes, and > Hello there... > > I am an infrequent poster to this group but I do read a lot and it > has helped me lots > of times. My son Sam was born in May 2003 with bilateral clubfoot > and he has been > treated since his birth by Dr. Scher in New York (I just read > about someone else > being treated by Feldman, his colleague). Sam went through four sets > of casts and > had a tenotomy on his right foot but not his left. On Sam's first > day of life we also > found that he had bilaterally dislocated hips. We tried the Pavlik > harness and a closed > reduction procedure to fix his hips but nothing worked. After 3 or 4 > months, we > talked about scheduling an open reduction for his hips when we saw > that his right > foot, after being out of the cast for a month and in the DBB, had > regressed somewhat, > and we made an appointment to see a neurologist. In fact, it does > turn out that Sam > has a spinal cord defect of some kind. The radiologists describe it > as a " marked > thinning " of the lumbar region of the cord. Im not sure that Sam can > feel anything > below his waist or his knees, especially on his right side. He > certainly does not move > his ankles or knees on either side very much. All the doctors (at > this point we have > the orthopedist, neurologist, urologist, geneticist, pediatrician, > physical therapist) say > it REMINDS them of spina bifida but, given that Sam's vertebrae are > all closed, isnt. > The prognosis is spina-bifida-like: wheelchair or braces/crutches. > so that sucks. > > I was wondering if anybody on this site has heard of anything like > this happening to > others. I realize that at some point the clubfeet become an > ancillary problem and > may no longer subscribe here, but I wanted to check. > > Thank you in advance for your replies. > > Best Regards, > > Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 sabrina, thanks for your reply. all i meant to suggest was that sam's clubfeet have quickly become the least of our problems. we happened to arrive at sam's spinal cord problems through the route of the clubfeet, but if someone else knew about their kids spinal issues before the clubfeet, then it is likely they wouldnt have stopped in at this great site and instead gone directly to whatever other site addresses their more serious problems. i appreciate your offer to check with your doc; i live in new york city where the doctors see lots and lots of clubfeet kids and they have never seen this either. thanks again. bill > I realize that at some point the clubfeet become an > > ancillary problem and > > may no longer subscribe here, but I wanted to check. > I'm not understanding this sentence. I think that sam was born with clubfoot > and that should make you able to be a member here. PLease help me on this > understanding. Also I have not heard of any kids with what Sam has. I live in a > very small town and the word clubfoot is a very strange word and people tend to > shy away. That is why I have joined this group and I feel that no matter if > you child has just clubfoot or was born with other things to ( like my son ) > we should welcome everyone here. My son see a therapist 2 a week and i could > ask her some info on this if you would like. > I hope all gose well for you son Sam and for you. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hello Bill, Our son has Open Spina Bifida also known as Myelomengingocele. Our son does not have feeling the knee down but does move his legs using the quads, ilios and gluteal muscles. We did the Ponseti method, had sores around 11 months old, took DBB off to heal resulting in relapse. Dr. Ponseti did recasting followed by DBB, after five days inDBB (son now crawling all over and trying to stand) his feet to knees were swollen, bruised etc. It appears due to the lack of sensation and his mobility that he stress fractured bilateral tibia fibulas in the lower leg ankle area. My sharing is if there seems to be any Spina Bifida issues ( can be closed defect) and there is some lack of sensation proceed very carefully with the DBB, when our son was less mobile the correction was holding great once he got mobile the torsion and stress on his insensate feet was terrific. We currently are awaiting to see a specialist in Chicago that does both Spina Bifida and Clubfeet issues. Our son will have to have surgery in order to get him braceble so he can walk with crutches/walker. Hope you get all the answers for your child soon so you can make the best choices for him. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hi Bill, I'm so sorry that Sam hasn't responded as well as you hoped to the treatment for the clubfoot and hip dislocation. It must be incredibly disappointing. I remember when he was first born and you posted here inquiring if there was some of sort of syndrome with both clubfoot and hip displasia. You must have had a hunch at the time that something else was going on. It sounds like a good sign that he is at least moving his foot and leg a little. Hopefully with a good group of doctors and early intervention you will be able to figure it out and get him some help so that he can progress in his development. I'm the one who is seeing Dr. Scher's colleague Dr. Feldman and Chelsea was born with hip displasia - but she did wear the harness and it corrected her hips - her left foot is another story. Chelsea was born with one of those mongoloid type birthmarks on her lower bark - it looks like a black and blue mark, and it is about the size of my hand - it looks alot like I gave her a big smack actually. I just mentioned this because alot of people are talking about dimples...Also she seems a little delayed in some of her development milestones -she doesn't really support her weight when held in a standing position (she is almost 9 months) and she isn't babbling yet. So maybe there is something else going on with her too? I just haven't been able to get your story out of my mind since I read it last night. Please keep us posted with any news. I will be thinking of Sam. Meredith Mom to Chelsea (1/29/03) bilateral CF > Hello there... > > I am an infrequent poster to this group but I do read a lot and it > has helped me lots > of times. My son Sam was born in May 2003 with bilateral clubfoot > and he has been > treated since his birth by Dr. Scher in New York (I just read > about someone else > being treated by Feldman, his colleague). Sam went through four sets > of casts and > had a tenotomy on his right foot but not his left. On Sam's first > day of life we also > found that he had bilaterally dislocated hips. We tried the Pavlik > harness and a closed > reduction procedure to fix his hips but nothing worked. After 3 or 4 > months, we > talked about scheduling an open reduction for his hips when we saw > that his right > foot, after being out of the cast for a month and in the DBB, had > regressed somewhat, > and we made an appointment to see a neurologist. In fact, it does > turn out that Sam > has a spinal cord defect of some kind. The radiologists describe it > as a " marked > thinning " of the lumbar region of the cord. Im not sure that Sam can > feel anything > below his waist or his knees, especially on his right side. He > certainly does not move > his ankles or knees on either side very much. All the doctors (at > this point we have > the orthopedist, neurologist, urologist, geneticist, pediatrician, > physical therapist) say > it REMINDS them of spina bifida but, given that Sam's vertebrae are > all closed, isnt. > The prognosis is spina-bifida-like: wheelchair or braces/crutches. > so that sucks. > > I was wondering if anybody on this site has heard of anything like > this happening to > others. I realize that at some point the clubfeet become an > ancillary problem and > may no longer subscribe here, but I wanted to check. > > Thank you in advance for your replies. > > Best Regards, > > Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Meredith, Thank you for your thoughts. when we first found out about the clubfeet during the 20 week ultrasound scan, we were fearful of a complex syndromic outcome and it did seem unusual to have the hips and the feet together. i am told that if they are uncorrelated then there is about a 1 in 1000 chance of each happening. that means that together it would be 1 in a million, which seemed too unlikely. it is a good sign, i think, that chelsea's hips were correctible; dr. scher said that the paralysis is the cause of the sam's clubfoot and hip dysplasia. furthermore, most of the stuff i have read about spinal cord problems indicate a wine-colored mark, not black and blue. what is wrong with chelsea's left foot? we actually got to our present situation after we had noticed that sam's right foot had regressed somewhat after being out of the casts and in the bar for only a month. sam also doesnt support his weight at all, obviously. if you want, you can mention me to dr. feldman and he can consult with dr. scher and see if chelsea should be examined further. do you think that she can feel her legs and feeet? also, if you wanted to get together and have a cup of coffee or anything in the city, our get the kids together, might be fun. > > Hello there... > > > > I am an infrequent poster to this group but I do read a lot and it > > has helped me lots > > of times. My son Sam was born in May 2003 with bilateral clubfoot > > and he has been > > treated since his birth by Dr. Scher in New York (I just read > > about someone else > > being treated by Feldman, his colleague). Sam went through four > sets > > of casts and > > had a tenotomy on his right foot but not his left. On Sam's first > > day of life we also > > found that he had bilaterally dislocated hips. We tried the Pavlik > > harness and a closed > > reduction procedure to fix his hips but nothing worked. After 3 > or 4 > > months, we > > talked about scheduling an open reduction for his hips when we saw > > that his right > > foot, after being out of the cast for a month and in the DBB, had > > regressed somewhat, > > and we made an appointment to see a neurologist. In fact, it does > > turn out that Sam > > has a spinal cord defect of some kind. The radiologists describe > it > > as a " marked > > thinning " of the lumbar region of the cord. Im not sure that Sam > can > > feel anything > > below his waist or his knees, especially on his right side. He > > certainly does not move > > his ankles or knees on either side very much. All the doctors (at > > this point we have > > the orthopedist, neurologist, urologist, geneticist, pediatrician, > > physical therapist) say > > it REMINDS them of spina bifida but, given that Sam's vertebrae are > > all closed, isnt. > > The prognosis is spina-bifida-like: wheelchair or > braces/crutches. > > so that sucks. > > > > I was wondering if anybody on this site has heard of anything like > > this happening to > > others. I realize that at some point the clubfeet become an > > ancillary problem and > > may no longer subscribe here, but I wanted to check. > > > > Thank you in advance for your replies. > > > > Best Regards, > > > > Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Eileen, the point you make is very interesting and one that i had not thought of before. i will definitely keep a sharp eye out for possible injury to sam's lower body. sam does not have spina bifida as all his vertebrae are closed, yet many of the issues seem awfully similar. it is good to hear that your son is crawling and trying to walk. sam also can move his legs (together, never one at a time) from his hip area, which i think uses the same muscle groups you mention. maybe sam will have as much function as your son. what specialist are you going to see in chicago and at what hospital? although i live in new york city, i grew up in chicago and my parents still live there. best, bill > Hello Bill, > > Our son has Open Spina Bifida also known as Myelomengingocele. Our son > does not have feeling the knee down but does move his legs using the quads, > ilios and gluteal muscles. We did the Ponseti method, had sores around 11 months > old, took DBB off to heal resulting in relapse. Dr. Ponseti did recasting > followed by DBB, after five days inDBB (son now crawling all over and trying to > stand) his feet to knees were swollen, bruised etc. It appears due to the lack > of sensation and his mobility that he stress fractured bilateral tibia fibulas > in the lower leg ankle area. > My sharing is if there seems to be any Spina Bifida issues ( can be > closed defect) and there is some lack of sensation proceed very carefully with the > DBB, when our son was less mobile the correction was holding great once he got > mobile the torsion and stress on his insensate feet was terrific. We > currently are awaiting to see a specialist in Chicago that does both Spina Bifida and > Clubfeet issues. Our son will have to have surgery in order to get him > braceble so he can walk with crutches/walker. > Hope you get all the answers for your child soon so you can make the best > choices for him. > > Eileen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 In a message dated 10/23/2003 9:51:36 AM Central Daylight Time, wgreenberg1@... writes: > what specialist are you going to see in chicago and at what > hospital? although i live in new york city, i grew up in chicago and > my parents still live there. > > best, > > bill > Bill, will be seeing Dr. Dias he is out of Northwestern as well as Children's Memorial. I grew up there as well although not there now. My sister's son had Clubfeet and Dr. Dias was the ortho surgeon. He has a website that can be seen here http://www.lsdias.com/dias.htm My sister commented that when she was doing her son's weekly appts. she met people from all over the world going to Dr. Dias for their children's ortho problems. Also have you considered Tethered cord? During our son's last hospitalization for shunt problems there were 2 children operated on that week for Tethered cord. One had Spina Bifida Occulta, fully mobile 7 year old. Other was a 4 year old that did not have Spina Bifida but was having some lower leg motor problems and tethered cord was found on a MRI. Both recovered beautifully after the release was done. I should rephrase that my son is trying to stand not walk, his PT and I thought with how well he was doing in June he would be walking with HKAFO's by Christmas. The relapse and stress fractures have put a halt to his progressive mobility for now, but hoping after surgery we can get him going full speed ahead. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 > > Hello Bill, > > > > Our son has Open Spina Bifida also known as Myelomengingocele. > Our son > > does not have feeling the knee down but does move his legs using > the quads, > > ilios and gluteal muscles. We did the Ponseti method, had sores > around 11 months > > old, took DBB off to heal resulting in relapse. Dr. Ponseti did > recasting > > followed by DBB, after five days inDBB (son now crawling all over > and trying to > > stand) his feet to knees were swollen, bruised etc. It appears due > to the lack > > of sensation and his mobility that he stress fractured bilateral > tibia fibulas > > in the lower leg ankle area. > > My sharing is if there seems to be any Spina Bifida issues ( > can be > > closed defect) and there is some lack of sensation proceed very > carefully with the > > DBB, when our son was less mobile the correction was holding great > once he got > > mobile the torsion and stress on his insensate feet was terrific. > We > > currently are awaiting to see a specialist in Chicago that does > both Spina Bifida and > > Clubfeet issues. Our son will have to have surgery in order to get > him > > braceble so he can walk with crutches/walker. > > Hope you get all the answers for your child soon so you can > make the best > > choices for him. > > > > Eileen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 jennifer, thank you for your reply. i think i will learn something by conversing with other parents such as yourself. i am aware of spina bifida occulta but even that, in my understanding, presents with a defect in the vertabrae and is not totally closed. we had 2 different MRI's and, given sam's issues, they were obviously checking every one, and they did not find any. the belief (at this time) is that sam's condition is not degenerative although i dont think that has been definitively ruled out. sam does not move his knees or his ankles voluntarily but i wouldnt call them stiff. as i think i mentioned in another post, he does move both his legs at the same time from the hip joints, raising them in the air for a few seconds when he is laying on his back. now and then i will see him move his knee but it seems like a twitch or a reflex. any further insights you might have are appreciated. thanks bill > > > Hello Bill, > > > > > > Our son has Open Spina Bifida also known as > Myelomengingocele. > > Our son > > > does not have feeling the knee down but does move his legs using > > the quads, > > > ilios and gluteal muscles. We did the Ponseti method, had sores > > around 11 months > > > old, took DBB off to heal resulting in relapse. Dr. Ponseti did > > recasting > > > followed by DBB, after five days inDBB (son now crawling all > over > > and trying to > > > stand) his feet to knees were swollen, bruised etc. It appears > due > > to the lack > > > of sensation and his mobility that he stress fractured bilateral > > tibia fibulas > > > in the lower leg ankle area. > > > My sharing is if there seems to be any Spina Bifida issues ( > > can be > > > closed defect) and there is some lack of sensation proceed very > > carefully with the > > > DBB, when our son was less mobile the correction was holding > great > > once he got > > > mobile the torsion and stress on his insensate feet was > terrific. > > We > > > currently are awaiting to see a specialist in Chicago that does > > both Spina Bifida and > > > Clubfeet issues. Our son will have to have surgery in order to > get > > him > > > braceble so he can walk with crutches/walker. > > > Hope you get all the answers for your child soon so you can > > make the best > > > choices for him. > > > > > > Eileen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 i keep forgetting to mention, there is nothing in sam's behavior that stands out as unusual. even at only 5 months old, he is very alert, he recognizes his parents, he can track objects 90 degrees or more (not 180 though), he reaches and grabs at toys hanging from his baby gym. when he plays with toys, he switches hands, etc. sam is happy, smiling, and clearly not uncomfortable. Quote Link to comment Share on other sites More sharing options...
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