Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi, everyone! I am finally getting around to posting again! First of all, thank you to EVERYONE who posted about my " curvy sitting and foot pointing straight " e-mail! It's interesting because many of you piped in with other " issues " that your children have--and has many of the same--even things that I didn't even mention! The simian crease in his palm-- has it. Dimples in his knees & elbows-- has that too. Heart murmur--got it. Dimple above the booty--got it! I find it VERY interesting that our children have so many similar anomalies, yet there is no connection. Here's where we are at right now. 's heart was EKG'd and sonogramed and all is well. It's a very " mild " (is that the word??) murmur, some docs can't even hear it. The cardiologist told us he's fine and we never have to go back to him ever again. He said it's not even really a murmur, but they have no other word for this slight echo. The ptosis--droopy eyelid--the opthalmologist said his eyes themselves seem to be fine, but it's a good thing we got him checked out b/c what happens with ptosis is that sometimes the lid droops so much that it covers part or all of the pupil and then that eye starts to " shut " down and then the person develops amblyopia (aka lazy eye). So, for those of you that have noticed this drooping of the eyelid in your children--GO GET THEM CHECK OUT! It's so important to have this monitored by an opthalmologist. They usually wait until 3-5 yrs. of age to see if any surgery is needed UNLESS it's impeding their vision now. I think we may end up doing the surgery--for cosmetic reasons--even if it does not impede his vision. It's pretty noticeable and it doesn't seem to be getting any better. (My cousin's five year old asked me : " Why is 's eye crooked? " ) So, we will see. The torticollis--I THINK that he has this because of the ptosis. I feel like he tilts his head to the left to lift his right eye (the non-ptosis eye) higher. We certainly did not notice the torticollis from birth, though many times it is congenital. The muscle on one side of the neck is damaged either in utero or during birth and there is often a small bump on that side of the neck which disappears. (We never noticed any bum like this.) But there is a condition called OCULAR torticollis, which is what I think he may have. It may have developed b/c of the eye. I will bring it up to his pediatrician the next time we go. Now, as for the CURVY SITTING, well, we had a follow-up with the ortho for his CF on Tuesday so while we were there I had Dr. Feldman take a look at how he sits and he got kinda quiet and said we should take an x-ray. I KNEW what the result was going to be. I was just in denial. He has scoliosis. Yet another support group to look into! Anyway, we were devastated with the news. Again, I KNOW there are worse things in life and I should (and do) thank God that this is something correctible, but I was still not thrilled to hear the news. I NOW have so many questions for the doctor that I did not think of while we were there on Tuesday--of course. FOr instance, can the scoliosis be caused by the torticollis. His x-ray was taken sitting, but if we took an x-ray with him lying down, would the curve still be there, b/c he looks straight when lying down. Wouldn't have the scoliosis--if it is indeed infantile scoliosis--shown up on the spine x-ray they had taken of him the day after he was born? It LOOKS as if 4 of teh vertebrae are fused on one side, but it is possible that they are not. If they ARE fused, they would have been fused from birth, no? In any case, he needs to have an MRI done--which in it of itself is going to be difficult to deal with. (I know a few of your babies have had MRI's--I'd love to hear about how that went. You can e-mail me privately, if you want.) So, we'll see what shows up on that. I just don't know what to think anymore. SO, if your child sits " curvy " like this, please take him to get looked at. I know had mentioned that sits similarly... has been getting PT & OT since the end of June through EI and that has helped with the muscle tightness he has all over. His torticollis has gotten better and the tightness in his fingers has gotten a lot better. The x-ray does explain why the PT never could get a nice curve in his spine, though. She tries to stretch him out over a ball or just by bending his head forward and his knees towards his face, but he can never quite get into that " curled into a ball " position. This is b/c his spine curves sideways. Sigh. Anyway, I am so sorry for the length of this e-mail!!!!!!! Phew! It's an eye-ful! But, please feel free to e-mail me via this group or my private e-mail. Especially if any of you have any experience with scoliosis. As a side note, I always say how we go back and forth on how we feel about Dr. Feldman. He is dismissive at times and not very " warm. " But this past Tuesday he was wonderful. So human and sympathetic. He even gave ie a kiss on the forehead which brought both my husband and myself to tears. Okay, I'm done writing for now! Thanks again to everyone!! mommy to (12/15/04, rt CF, FAB 14-16 hrs./day) Goodin wrote: sits like this as well! He also has torticollis, and his developmental dr. seems to think that is what is causing him to sit this way. He also is really tight in his neck and back all around, so I don't know if your little guy is or not. Just wanted to let you know you aren't the only one. We have been working on this for 3 months in physical therapy. It has gotten slightly better as he has gained more control of his torso How old is your son and does he get physical therapy? 11/19/04 Re: Re: Curvy sitting and foot pointing straight Thanks, Lori. Okay, I figured the foor thing is probably b/c that's how he positions himself when he's in the FAB. Especially when he sleeps on his side--the left leg is bent and the right one is up in the air un-bent As for the curvy sitting, I think that may be separate, but I just wanted to see if any other CF parents have noticed this, so that if it IS related to the FAB or whatever, I can kinda explain it. But it may be a spinal curvature issue. :-( As if we didn't have enough to worry about. It's so funny, because the clubfoot used to be the MAJOR thing I was always worried about and stressed about and now that's taken a backseat to all these other little things that have popped up since birth--tightness in two fingers on each hand, ptosis (droopy eyelid) on the left eye, torticollis (he tilts his head to the left), and now the way he sits. I try to just enjoy him and cherish this first year, but I always find myself looking at him and examining him, trying to figure out if these things are at all connected or individual problems or what! Thanks again! Lori and Elijah wrote: Our 16 month old, Elijah has always sat with one leg out and one leg under him. He's RCF and keeps the right foot out and the left under him. My husband will pull the left leg out and Elijah will put it right back under, LOL! Ive not noticed that he sits curvy tho'. Lori Mom to , Nova, Ethan and Elijah 3/26/04 RCF Atypical DBB nights only. > Hello, everyone! I have two separate questions. (8 months old next week) has a right club foot and is currently in the FAB for 14-16 hours a day. I've recently noticed more and more that when he sits up, his body leans to the right and his head leans to the left. Looks almost like an " S " from the back. He DOES have torticollis, but the way he leans his body that way just looks weird to me. Has anyone seen anything similar. He had spinal x-rays when he was born and no one mentioned anything about scoliosis, but who knows? > > Also, he has unilateral right CF and when he's out of the shoes, he usually keeps his left leg bent and the foot dorsiflexed normally, but the right leg is usually kept straight and the toes pointing down. Is this normal? I believe his foot is fully corrected. He's had no probelms with the shoes. He also has just recently started standing for a few seconds at a time with help, so I don't know if that will help keep his foot more dorsiflexed. > > If anyone has anything to say about any of this, I'd love to hear! > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi, everyone! I am finally getting around to posting again! First of all, thank you to EVERYONE who posted about my " curvy sitting and foot pointing straight " e-mail! It's interesting because many of you piped in with other " issues " that your children have--and has many of the same--even things that I didn't even mention! The simian crease in his palm-- has it. Dimples in his knees & elbows-- has that too. Heart murmur--got it. Dimple above the booty--got it! I find it VERY interesting that our children have so many similar anomalies, yet there is no connection. Here's where we are at right now. 's heart was EKG'd and sonogramed and all is well. It's a very " mild " (is that the word??) murmur, some docs can't even hear it. The cardiologist told us he's fine and we never have to go back to him ever again. He said it's not even really a murmur, but they have no other word for this slight echo. The ptosis--droopy eyelid--the opthalmologist said his eyes themselves seem to be fine, but it's a good thing we got him checked out b/c what happens with ptosis is that sometimes the lid droops so much that it covers part or all of the pupil and then that eye starts to " shut " down and then the person develops amblyopia (aka lazy eye). So, for those of you that have noticed this drooping of the eyelid in your children--GO GET THEM CHECK OUT! It's so important to have this monitored by an opthalmologist. They usually wait until 3-5 yrs. of age to see if any surgery is needed UNLESS it's impeding their vision now. I think we may end up doing the surgery--for cosmetic reasons--even if it does not impede his vision. It's pretty noticeable and it doesn't seem to be getting any better. (My cousin's five year old asked me : " Why is 's eye crooked? " ) So, we will see. The torticollis--I THINK that he has this because of the ptosis. I feel like he tilts his head to the left to lift his right eye (the non-ptosis eye) higher. We certainly did not notice the torticollis from birth, though many times it is congenital. The muscle on one side of the neck is damaged either in utero or during birth and there is often a small bump on that side of the neck which disappears. (We never noticed any bum like this.) But there is a condition called OCULAR torticollis, which is what I think he may have. It may have developed b/c of the eye. I will bring it up to his pediatrician the next time we go. Now, as for the CURVY SITTING, well, we had a follow-up with the ortho for his CF on Tuesday so while we were there I had Dr. Feldman take a look at how he sits and he got kinda quiet and said we should take an x-ray. I KNEW what the result was going to be. I was just in denial. He has scoliosis. Yet another support group to look into! Anyway, we were devastated with the news. Again, I KNOW there are worse things in life and I should (and do) thank God that this is something correctible, but I was still not thrilled to hear the news. I NOW have so many questions for the doctor that I did not think of while we were there on Tuesday--of course. FOr instance, can the scoliosis be caused by the torticollis. His x-ray was taken sitting, but if we took an x-ray with him lying down, would the curve still be there, b/c he looks straight when lying down. Wouldn't have the scoliosis--if it is indeed infantile scoliosis--shown up on the spine x-ray they had taken of him the day after he was born? It LOOKS as if 4 of teh vertebrae are fused on one side, but it is possible that they are not. If they ARE fused, they would have been fused from birth, no? In any case, he needs to have an MRI done--which in it of itself is going to be difficult to deal with. (I know a few of your babies have had MRI's--I'd love to hear about how that went. You can e-mail me privately, if you want.) So, we'll see what shows up on that. I just don't know what to think anymore. SO, if your child sits " curvy " like this, please take him to get looked at. I know had mentioned that sits similarly... has been getting PT & OT since the end of June through EI and that has helped with the muscle tightness he has all over. His torticollis has gotten better and the tightness in his fingers has gotten a lot better. The x-ray does explain why the PT never could get a nice curve in his spine, though. She tries to stretch him out over a ball or just by bending his head forward and his knees towards his face, but he can never quite get into that " curled into a ball " position. This is b/c his spine curves sideways. Sigh. Anyway, I am so sorry for the length of this e-mail!!!!!!! Phew! It's an eye-ful! But, please feel free to e-mail me via this group or my private e-mail. Especially if any of you have any experience with scoliosis. As a side note, I always say how we go back and forth on how we feel about Dr. Feldman. He is dismissive at times and not very " warm. " But this past Tuesday he was wonderful. So human and sympathetic. He even gave ie a kiss on the forehead which brought both my husband and myself to tears. Okay, I'm done writing for now! Thanks again to everyone!! mommy to (12/15/04, rt CF, FAB 14-16 hrs./day) Goodin wrote: sits like this as well! He also has torticollis, and his developmental dr. seems to think that is what is causing him to sit this way. He also is really tight in his neck and back all around, so I don't know if your little guy is or not. Just wanted to let you know you aren't the only one. We have been working on this for 3 months in physical therapy. It has gotten slightly better as he has gained more control of his torso How old is your son and does he get physical therapy? 11/19/04 Re: Re: Curvy sitting and foot pointing straight Thanks, Lori. Okay, I figured the foor thing is probably b/c that's how he positions himself when he's in the FAB. Especially when he sleeps on his side--the left leg is bent and the right one is up in the air un-bent As for the curvy sitting, I think that may be separate, but I just wanted to see if any other CF parents have noticed this, so that if it IS related to the FAB or whatever, I can kinda explain it. But it may be a spinal curvature issue. :-( As if we didn't have enough to worry about. It's so funny, because the clubfoot used to be the MAJOR thing I was always worried about and stressed about and now that's taken a backseat to all these other little things that have popped up since birth--tightness in two fingers on each hand, ptosis (droopy eyelid) on the left eye, torticollis (he tilts his head to the left), and now the way he sits. I try to just enjoy him and cherish this first year, but I always find myself looking at him and examining him, trying to figure out if these things are at all connected or individual problems or what! Thanks again! Lori and Elijah wrote: Our 16 month old, Elijah has always sat with one leg out and one leg under him. He's RCF and keeps the right foot out and the left under him. My husband will pull the left leg out and Elijah will put it right back under, LOL! Ive not noticed that he sits curvy tho'. Lori Mom to , Nova, Ethan and Elijah 3/26/04 RCF Atypical DBB nights only. > Hello, everyone! I have two separate questions. (8 months old next week) has a right club foot and is currently in the FAB for 14-16 hours a day. I've recently noticed more and more that when he sits up, his body leans to the right and his head leans to the left. Looks almost like an " S " from the back. He DOES have torticollis, but the way he leans his body that way just looks weird to me. Has anyone seen anything similar. He had spinal x-rays when he was born and no one mentioned anything about scoliosis, but who knows? > > Also, he has unilateral right CF and when he's out of the shoes, he usually keeps his left leg bent and the foot dorsiflexed normally, but the right leg is usually kept straight and the toes pointing down. Is this normal? I believe his foot is fully corrected. He's had no probelms with the shoes. He also has just recently started standing for a few seconds at a time with help, so I don't know if that will help keep his foot more dorsiflexed. > > If anyone has anything to say about any of this, I'd love to hear! > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi , You are right, that was an eye-full. I wish I could be of more help with input, etc. I am here for support. It sounds like you are getting to the bottom of what is happening and will be on your way to making a plan for getting them resolved. Louisa > > Hello, everyone! I have two separate questions. (8 months > old next week) has a right club foot and is currently in the FAB for > 14-16 hours a day. I've recently noticed more and more that when he > sits up, his body leans to the right and his head leans to the > left. Looks almost like an " S " from the back. He DOES have > torticollis, but the way he leans his body that way just looks weird > to me. Has anyone seen anything similar. He had spinal x-rays when > he was born and no one mentioned anything about scoliosis, but who > knows? > > > > Also, he has unilateral right CF and when he's out of the shoes, > he usually keeps his left leg bent and the foot dorsiflexed > normally, but the right leg is usually kept straight and the toes > pointing down. Is this normal? I believe his foot is fully > corrected. He's had no probelms with the shoes. He also has just > recently started standing for a few seconds at a time with help, so > I don't know if that will help keep his foot more dorsiflexed. > > > > If anyone has anything to say about any of this, I'd love to hear! > > > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi , You are right, that was an eye-full. I wish I could be of more help with input, etc. I am here for support. It sounds like you are getting to the bottom of what is happening and will be on your way to making a plan for getting them resolved. Louisa > > Hello, everyone! I have two separate questions. (8 months > old next week) has a right club foot and is currently in the FAB for > 14-16 hours a day. I've recently noticed more and more that when he > sits up, his body leans to the right and his head leans to the > left. Looks almost like an " S " from the back. He DOES have > torticollis, but the way he leans his body that way just looks weird > to me. Has anyone seen anything similar. He had spinal x-rays when > he was born and no one mentioned anything about scoliosis, but who > knows? > > > > Also, he has unilateral right CF and when he's out of the shoes, > he usually keeps his left leg bent and the foot dorsiflexed > normally, but the right leg is usually kept straight and the toes > pointing down. Is this normal? I believe his foot is fully > corrected. He's had no probelms with the shoes. He also has just > recently started standing for a few seconds at a time with help, so > I don't know if that will help keep his foot more dorsiflexed. > > > > If anyone has anything to say about any of this, I'd love to hear! > > > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi , You are right, that was an eye-full. I wish I could be of more help with input, etc. I am here for support. It sounds like you are getting to the bottom of what is happening and will be on your way to making a plan for getting them resolved. Louisa > > Hello, everyone! I have two separate questions. (8 months > old next week) has a right club foot and is currently in the FAB for > 14-16 hours a day. I've recently noticed more and more that when he > sits up, his body leans to the right and his head leans to the > left. Looks almost like an " S " from the back. He DOES have > torticollis, but the way he leans his body that way just looks weird > to me. Has anyone seen anything similar. He had spinal x-rays when > he was born and no one mentioned anything about scoliosis, but who > knows? > > > > Also, he has unilateral right CF and when he's out of the shoes, > he usually keeps his left leg bent and the foot dorsiflexed > normally, but the right leg is usually kept straight and the toes > pointing down. Is this normal? I believe his foot is fully > corrected. He's had no probelms with the shoes. He also has just > recently started standing for a few seconds at a time with help, so > I don't know if that will help keep his foot more dorsiflexed. > > > > If anyone has anything to say about any of this, I'd love to hear! > > > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi , You are right, that was an eye-full. I wish I could be of more help with input, etc. I am here for support. It sounds like you are getting to the bottom of what is happening and will be on your way to making a plan for getting them resolved. Louisa > > Hello, everyone! I have two separate questions. (8 months > old next week) has a right club foot and is currently in the FAB for > 14-16 hours a day. I've recently noticed more and more that when he > sits up, his body leans to the right and his head leans to the > left. Looks almost like an " S " from the back. He DOES have > torticollis, but the way he leans his body that way just looks weird > to me. Has anyone seen anything similar. He had spinal x-rays when > he was born and no one mentioned anything about scoliosis, but who > knows? > > > > Also, he has unilateral right CF and when he's out of the shoes, > he usually keeps his left leg bent and the foot dorsiflexed > normally, but the right leg is usually kept straight and the toes > pointing down. Is this normal? I believe his foot is fully > corrected. He's had no probelms with the shoes. He also has just > recently started standing for a few seconds at a time with help, so > I don't know if that will help keep his foot more dorsiflexed. > > > > If anyone has anything to say about any of this, I'd love to hear! > > > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Oh my gosh ... What a lot of stuff to take in! I will be thinking of you and hoping for some great news soon. You are so smart to find another support group, I think there are lots of ways to treat scoliosis and it's got to be good you found out so early. Maybe a Chiropractor would be a good place to look into as well? It must feel overwhelming with all this, you take care of yourself and be strong K? Big hugs, Kori At 09:39 AM 8/18/2005, you wrote: >Hi, everyone! I am finally getting around to posting again! > >First of all, thank you to EVERYONE who posted about my " curvy sitting and >foot pointing straight " e-mail! > >It's interesting because many of you piped in with other " issues " that >your children have--and has many of the same--even things that I >didn't even mention! The simian crease in his palm-- has it. Dimples >in his knees & elbows-- has that too. Heart murmur--got it. Dimple >above the booty--got it! I find it VERY interesting that our children >have so many similar anomalies, yet there is no connection. > >Here's where we are at right now. > >'s heart was EKG'd and sonogramed and all is well. It's a very " mild " >(is that the word??) murmur, some docs can't even hear it. The >cardiologist told us he's fine and we never have to go back to him ever >again. He said it's not even really a murmur, but they have no other word >for this slight echo. > >The ptosis--droopy eyelid--the opthalmologist said his eyes themselves >seem to be fine, but it's a good thing we got him checked out b/c what >happens with ptosis is that sometimes the lid droops so much that it >covers part or all of the pupil and then that eye starts to " shut " down >and then the person develops amblyopia (aka lazy eye). So, for those of >you that have noticed this drooping of the eyelid in your children--GO GET >THEM CHECK OUT! It's so important to have this monitored by an >opthalmologist. They usually wait until 3-5 yrs. of age to see if any >surgery is needed UNLESS it's impeding their vision now. I think we may >end up doing the surgery--for cosmetic reasons--even if it does not impede >his vision. It's pretty noticeable and it doesn't seem to be getting any >better. (My cousin's five year old asked me : " Why is 's eye >crooked? " ) So, we will see. > >The torticollis--I THINK that he has this because of the ptosis. I feel >like he tilts his head to the left to lift his right eye (the non-ptosis >eye) higher. We certainly did not notice the torticollis from birth, >though many times it is congenital. The muscle on one side of the neck is >damaged either in utero or during birth and there is often a small bump on >that side of the neck which disappears. (We never noticed any bum like >this.) But there is a condition called OCULAR torticollis, which is what >I think he may have. It may have developed b/c of the eye. I will bring >it up to his pediatrician the next time we go. > >Now, as for the CURVY SITTING, well, we had a follow-up with the ortho for >his CF on Tuesday so while we were there I had Dr. Feldman take a look at >how he sits and he got kinda quiet and said we should take an x-ray. I >KNEW what the result was going to be. I was just in denial. He has >scoliosis. Yet another support group to look into! Anyway, we were >devastated with the news. Again, I KNOW there are worse things in life >and I should (and do) thank God that this is something correctible, but I >was still not thrilled to hear the news. I NOW have so many questions for >the doctor that I did not think of while we were there on Tuesday--of >course. FOr instance, can the scoliosis be caused by the >torticollis. His x-ray was taken sitting, but if we took an x-ray with >him lying down, would the curve still be there, b/c he looks straight when >lying down. Wouldn't have the scoliosis--if it is indeed infantile >scoliosis--shown up on the spine x-ray they had taken of him the day after > he was born? It LOOKS as if 4 of teh vertebrae are fused on one side, > but it is possible that they are not. If they ARE fused, they would have > been fused from birth, no? In any case, he needs to have an MRI > done--which in it of itself is going to be difficult to deal with. (I > know a few of your babies have had MRI's--I'd love to hear about how that > went. You can e-mail me privately, if you want.) So, we'll see what > shows up on that. I just don't know what to think anymore. SO, if your > child sits " curvy " like this, please take him to get looked at. I know > had mentioned that sits similarly... > > has been getting PT & OT since the end of June through EI and that >has helped with the muscle tightness he has all over. His torticollis has >gotten better and the tightness in his fingers has gotten a lot >better. The x-ray does explain why the PT never could get a nice curve in >his spine, though. She tries to stretch him out over a ball or just by >bending his head forward and his knees towards his face, but he can never >quite get into that " curled into a ball " position. This is b/c his spine >curves sideways. Sigh. > >Anyway, I am so sorry for the length of this e-mail!!!!!!! Phew! It's an >eye-ful! But, please feel free to e-mail me via this group or my private >e-mail. Especially if any of you have any experience with scoliosis. > >As a side note, I always say how we go back and forth on how we feel about >Dr. Feldman. He is dismissive at times and not very " warm. " But this >past Tuesday he was wonderful. So human and sympathetic. He even gave >ie a kiss on the forehead which brought both my husband and myself to >tears. > >Okay, I'm done writing for now! > >Thanks again to everyone!! > > >mommy to (12/15/04, rt CF, FAB 14-16 hrs./day) > > > > Goodin wrote: > sits like this as well! He also has torticollis, and his >developmental dr. seems to think that is what is causing him to sit this >way. He also is really tight in his neck and back all around, so I don't >know if your little guy is or not. Just wanted to let you know you aren't >the only one. We have been working on this for 3 months in physical >therapy. It has gotten slightly better as he has gained more control of >his torso How old is your son and does he get physical therapy? > > > 11/19/04 > > Re: Re: Curvy sitting and foot pointing straight > >Thanks, Lori. Okay, I figured the foor thing is probably b/c that's how >he positions himself when he's in the FAB. Especially when he sleeps on >his side--the left leg is bent and the right one is up in the air un-bent > >As for the curvy sitting, I think that may be separate, but I just wanted >to see if any other CF parents have noticed this, so that if it IS related >to the FAB or whatever, I can kinda explain it. But it may be a spinal >curvature issue. :-( As if we didn't have enough to worry about. It's >so funny, because the clubfoot used to be the MAJOR thing I was always >worried about and stressed about and now that's taken a backseat to all >these other little things that have popped up since birth--tightness in >two fingers on each hand, ptosis (droopy eyelid) on the left eye, >torticollis (he tilts his head to the left), and now the way he sits. I >try to just enjoy him and cherish this first year, but I always find >myself looking at him and examining him, trying to figure out if these >things are at all connected or individual problems or what! > >Thanks again! > > > >Lori and Elijah wrote: >Our 16 month old, Elijah has always sat with one leg out and one leg >under him. He's RCF and keeps the right foot out and the left >under him. My husband will pull the left leg out and Elijah will >put it right back under, LOL! > >Ive not noticed that he sits curvy tho'. > >Lori >Mom to , Nova, Ethan and Elijah 3/26/04 RCF Atypical DBB >nights only. > > > > > > Hello, everyone! I have two separate questions. (8 months >old next week) has a right club foot and is currently in the FAB for >14-16 hours a day. I've recently noticed more and more that when he >sits up, his body leans to the right and his head leans to the >left. Looks almost like an " S " from the back. He DOES have >torticollis, but the way he leans his body that way just looks weird >to me. Has anyone seen anything similar. He had spinal x-rays when >he was born and no one mentioned anything about scoliosis, but who >knows? > > > > Also, he has unilateral right CF and when he's out of the shoes, >he usually keeps his left leg bent and the foot dorsiflexed >normally, but the right leg is usually kept straight and the toes >pointing down. Is this normal? I believe his foot is fully >corrected. He's had no probelms with the shoes. He also has just >recently started standing for a few seconds at a time with help, so >I don't know if that will help keep his foot more dorsiflexed. > > > > If anyone has anything to say about any of this, I'd love to hear! > > > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Oh my gosh ... What a lot of stuff to take in! I will be thinking of you and hoping for some great news soon. You are so smart to find another support group, I think there are lots of ways to treat scoliosis and it's got to be good you found out so early. Maybe a Chiropractor would be a good place to look into as well? It must feel overwhelming with all this, you take care of yourself and be strong K? Big hugs, Kori At 09:39 AM 8/18/2005, you wrote: >Hi, everyone! I am finally getting around to posting again! > >First of all, thank you to EVERYONE who posted about my " curvy sitting and >foot pointing straight " e-mail! > >It's interesting because many of you piped in with other " issues " that >your children have--and has many of the same--even things that I >didn't even mention! The simian crease in his palm-- has it. Dimples >in his knees & elbows-- has that too. Heart murmur--got it. Dimple >above the booty--got it! I find it VERY interesting that our children >have so many similar anomalies, yet there is no connection. > >Here's where we are at right now. > >'s heart was EKG'd and sonogramed and all is well. It's a very " mild " >(is that the word??) murmur, some docs can't even hear it. The >cardiologist told us he's fine and we never have to go back to him ever >again. He said it's not even really a murmur, but they have no other word >for this slight echo. > >The ptosis--droopy eyelid--the opthalmologist said his eyes themselves >seem to be fine, but it's a good thing we got him checked out b/c what >happens with ptosis is that sometimes the lid droops so much that it >covers part or all of the pupil and then that eye starts to " shut " down >and then the person develops amblyopia (aka lazy eye). So, for those of >you that have noticed this drooping of the eyelid in your children--GO GET >THEM CHECK OUT! It's so important to have this monitored by an >opthalmologist. They usually wait until 3-5 yrs. of age to see if any >surgery is needed UNLESS it's impeding their vision now. I think we may >end up doing the surgery--for cosmetic reasons--even if it does not impede >his vision. It's pretty noticeable and it doesn't seem to be getting any >better. (My cousin's five year old asked me : " Why is 's eye >crooked? " ) So, we will see. > >The torticollis--I THINK that he has this because of the ptosis. I feel >like he tilts his head to the left to lift his right eye (the non-ptosis >eye) higher. We certainly did not notice the torticollis from birth, >though many times it is congenital. The muscle on one side of the neck is >damaged either in utero or during birth and there is often a small bump on >that side of the neck which disappears. (We never noticed any bum like >this.) But there is a condition called OCULAR torticollis, which is what >I think he may have. It may have developed b/c of the eye. I will bring >it up to his pediatrician the next time we go. > >Now, as for the CURVY SITTING, well, we had a follow-up with the ortho for >his CF on Tuesday so while we were there I had Dr. Feldman take a look at >how he sits and he got kinda quiet and said we should take an x-ray. I >KNEW what the result was going to be. I was just in denial. He has >scoliosis. Yet another support group to look into! Anyway, we were >devastated with the news. Again, I KNOW there are worse things in life >and I should (and do) thank God that this is something correctible, but I >was still not thrilled to hear the news. I NOW have so many questions for >the doctor that I did not think of while we were there on Tuesday--of >course. FOr instance, can the scoliosis be caused by the >torticollis. His x-ray was taken sitting, but if we took an x-ray with >him lying down, would the curve still be there, b/c he looks straight when >lying down. Wouldn't have the scoliosis--if it is indeed infantile >scoliosis--shown up on the spine x-ray they had taken of him the day after > he was born? It LOOKS as if 4 of teh vertebrae are fused on one side, > but it is possible that they are not. If they ARE fused, they would have > been fused from birth, no? In any case, he needs to have an MRI > done--which in it of itself is going to be difficult to deal with. (I > know a few of your babies have had MRI's--I'd love to hear about how that > went. You can e-mail me privately, if you want.) So, we'll see what > shows up on that. I just don't know what to think anymore. SO, if your > child sits " curvy " like this, please take him to get looked at. I know > had mentioned that sits similarly... > > has been getting PT & OT since the end of June through EI and that >has helped with the muscle tightness he has all over. His torticollis has >gotten better and the tightness in his fingers has gotten a lot >better. The x-ray does explain why the PT never could get a nice curve in >his spine, though. She tries to stretch him out over a ball or just by >bending his head forward and his knees towards his face, but he can never >quite get into that " curled into a ball " position. This is b/c his spine >curves sideways. Sigh. > >Anyway, I am so sorry for the length of this e-mail!!!!!!! Phew! It's an >eye-ful! But, please feel free to e-mail me via this group or my private >e-mail. Especially if any of you have any experience with scoliosis. > >As a side note, I always say how we go back and forth on how we feel about >Dr. Feldman. He is dismissive at times and not very " warm. " But this >past Tuesday he was wonderful. So human and sympathetic. He even gave >ie a kiss on the forehead which brought both my husband and myself to >tears. > >Okay, I'm done writing for now! > >Thanks again to everyone!! > > >mommy to (12/15/04, rt CF, FAB 14-16 hrs./day) > > > > Goodin wrote: > sits like this as well! He also has torticollis, and his >developmental dr. seems to think that is what is causing him to sit this >way. He also is really tight in his neck and back all around, so I don't >know if your little guy is or not. Just wanted to let you know you aren't >the only one. We have been working on this for 3 months in physical >therapy. It has gotten slightly better as he has gained more control of >his torso How old is your son and does he get physical therapy? > > > 11/19/04 > > Re: Re: Curvy sitting and foot pointing straight > >Thanks, Lori. Okay, I figured the foor thing is probably b/c that's how >he positions himself when he's in the FAB. Especially when he sleeps on >his side--the left leg is bent and the right one is up in the air un-bent > >As for the curvy sitting, I think that may be separate, but I just wanted >to see if any other CF parents have noticed this, so that if it IS related >to the FAB or whatever, I can kinda explain it. But it may be a spinal >curvature issue. :-( As if we didn't have enough to worry about. It's >so funny, because the clubfoot used to be the MAJOR thing I was always >worried about and stressed about and now that's taken a backseat to all >these other little things that have popped up since birth--tightness in >two fingers on each hand, ptosis (droopy eyelid) on the left eye, >torticollis (he tilts his head to the left), and now the way he sits. I >try to just enjoy him and cherish this first year, but I always find >myself looking at him and examining him, trying to figure out if these >things are at all connected or individual problems or what! > >Thanks again! > > > >Lori and Elijah wrote: >Our 16 month old, Elijah has always sat with one leg out and one leg >under him. He's RCF and keeps the right foot out and the left >under him. My husband will pull the left leg out and Elijah will >put it right back under, LOL! > >Ive not noticed that he sits curvy tho'. > >Lori >Mom to , Nova, Ethan and Elijah 3/26/04 RCF Atypical DBB >nights only. > > > > > > Hello, everyone! I have two separate questions. (8 months >old next week) has a right club foot and is currently in the FAB for >14-16 hours a day. I've recently noticed more and more that when he >sits up, his body leans to the right and his head leans to the >left. Looks almost like an " S " from the back. He DOES have >torticollis, but the way he leans his body that way just looks weird >to me. Has anyone seen anything similar. He had spinal x-rays when >he was born and no one mentioned anything about scoliosis, but who >knows? > > > > Also, he has unilateral right CF and when he's out of the shoes, >he usually keeps his left leg bent and the foot dorsiflexed >normally, but the right leg is usually kept straight and the toes >pointing down. Is this normal? I believe his foot is fully >corrected. He's had no probelms with the shoes. He also has just >recently started standing for a few seconds at a time with help, so >I don't know if that will help keep his foot more dorsiflexed. > > > > If anyone has anything to say about any of this, I'd love to hear! > > > > Thanks in advance to everyone!!!!!!!!!!!!!! > > > > > > mommy of (12/15/04 RT CF, FAB 14/16 hrs a day) > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , What a great mommy little ie has! Kudos to you for being aggressive in checking out all those things that didn't seem right to you right away! I hope you're able to get the rest of your questions answered soon! A little tidbit that you might find interesting- while Dr. Ponseti is most reknown for his method of correcting clubfoot, he was also a pioneer in the treatment of scoliosis. I read about that in one of the media articles about his life. =) Maybe we should start a new contact database on our board for our families to list the other medical issues that they have dealt with in addition to clubfoot (for all their kids- not just clubfooters) as a first resource for others looking for someone to talk to! Please keep us posted, . We're here for your family! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , What a great mommy little ie has! Kudos to you for being aggressive in checking out all those things that didn't seem right to you right away! I hope you're able to get the rest of your questions answered soon! A little tidbit that you might find interesting- while Dr. Ponseti is most reknown for his method of correcting clubfoot, he was also a pioneer in the treatment of scoliosis. I read about that in one of the media articles about his life. =) Maybe we should start a new contact database on our board for our families to list the other medical issues that they have dealt with in addition to clubfoot (for all their kids- not just clubfooters) as a first resource for others looking for someone to talk to! Please keep us posted, . We're here for your family! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , I am so proud of you for taking your mommy instinct seriously and getting this checked out, and for being so strong about this, you have been through so much and seem like you are really handling this well. Just another FYI, Dr. Dobbs has also done a lot of work w/ Scoliosis which I guess should be expected since he worked w/ Dr. Ponseti so long. You might want to take a look at this, just kind of gives a medical overview of scoliosis. http://www.emedicine.com/orthoped/topic526.htm I know there is another article that is a really neat story about a boy with Scoliosis that he worked with but I can't find it at the moment, I will keep looking. Hope this helps, I think there is a wealth of knowledge out there on the web! Be strong! Hugs, > , > What a great mommy little ie has! Kudos to you for being > aggressive in checking out all those things that didn't seem right to > you right away! > I hope you're able to get the rest of your questions answered soon! A > little tidbit that you might find interesting- while Dr. Ponseti is > most reknown for his method of correcting clubfoot, he was also a > pioneer in the treatment of scoliosis. I read about that in one of > the media articles about his life. =) > Maybe we should start a new contact database on our board for our > families to list the other medical issues that they have dealt with in > addition to clubfoot (for all their kids- not just clubfooters) as a > first resource for others looking for someone to talk to! > Please keep us posted, . We're here for your family! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , I am so proud of you for taking your mommy instinct seriously and getting this checked out, and for being so strong about this, you have been through so much and seem like you are really handling this well. Just another FYI, Dr. Dobbs has also done a lot of work w/ Scoliosis which I guess should be expected since he worked w/ Dr. Ponseti so long. You might want to take a look at this, just kind of gives a medical overview of scoliosis. http://www.emedicine.com/orthoped/topic526.htm I know there is another article that is a really neat story about a boy with Scoliosis that he worked with but I can't find it at the moment, I will keep looking. Hope this helps, I think there is a wealth of knowledge out there on the web! Be strong! Hugs, > , > What a great mommy little ie has! Kudos to you for being > aggressive in checking out all those things that didn't seem right to > you right away! > I hope you're able to get the rest of your questions answered soon! A > little tidbit that you might find interesting- while Dr. Ponseti is > most reknown for his method of correcting clubfoot, he was also a > pioneer in the treatment of scoliosis. I read about that in one of > the media articles about his life. =) > Maybe we should start a new contact database on our board for our > families to list the other medical issues that they have dealt with in > addition to clubfoot (for all their kids- not just clubfooters) as a > first resource for others looking for someone to talk to! > Please keep us posted, . We're here for your family! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , I just now read your update.. and I wanted to send hugs, and praise to you for following up on your instincts on the various signs you've been seeing and getting them checked out. I'm so sorry that these things have surfaced... and know you must be worried.. but you are doing so well getting them identified and started on the path for the right care.It's great the heart condition is not anything to be concerned about right now. I hope it all of it can be resolved well. It's great that you felt reassured by the concern and care Dr. Feldman gave you.. it brought a tear to my eye, too, just reading your post.. You sound so strong and capable.. your little guy is lucky to have such a great mom. I'll be praying for him and you, and eager to hear further news.. With very best wishes, and Claire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , I just now read your update.. and I wanted to send hugs, and praise to you for following up on your instincts on the various signs you've been seeing and getting them checked out. I'm so sorry that these things have surfaced... and know you must be worried.. but you are doing so well getting them identified and started on the path for the right care.It's great the heart condition is not anything to be concerned about right now. I hope it all of it can be resolved well. It's great that you felt reassured by the concern and care Dr. Feldman gave you.. it brought a tear to my eye, too, just reading your post.. You sound so strong and capable.. your little guy is lucky to have such a great mom. I'll be praying for him and you, and eager to hear further news.. With very best wishes, and Claire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 , I agree that this is a good idea. It's so bizarre that there are so many common other little anomalies that some of us are dealing with. Goodin wrote: - I think that is a great idea. was born with multiple issues I nor anyone one around me had heard of. The easier we can make it on parents the better! Re: Curvy sitting--Follow-Up! , What a great mommy little ie has! Kudos to you for being aggressive in checking out all those things that didn't seem right to you right away! I hope you're able to get the rest of your questions answered soon! A little tidbit that you might find interesting- while Dr. Ponseti is most reknown for his method of correcting clubfoot, he was also a pioneer in the treatment of scoliosis. I read about that in one of the media articles about his life. =) Maybe we should start a new contact database on our board for our families to list the other medical issues that they have dealt with in addition to clubfoot (for all their kids- not just clubfooters) as a first resource for others looking for someone to talk to! Please keep us posted, . We're here for your family! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 , Thank you for the article. There is so much out there on scoliosis. Pretty overwhelming. I will take a look at it tonight. wrote: , I am so proud of you for taking your mommy instinct seriously and getting this checked out, and for being so strong about this, you have been through so much and seem like you are really handling this well. Just another FYI, Dr. Dobbs has also done a lot of work w/ Scoliosis which I guess should be expected since he worked w/ Dr. Ponseti so long. You might want to take a look at this, just kind of gives a medical overview of scoliosis. http://www.emedicine.com/orthoped/topic526.htm I know there is another article that is a really neat story about a boy with Scoliosis that he worked with but I can't find it at the moment, I will keep looking. Hope this helps, I think there is a wealth of knowledge out there on the web! Be strong! Hugs, > , > What a great mommy little ie has! Kudos to you for being > aggressive in checking out all those things that didn't seem right to > you right away! > I hope you're able to get the rest of your questions answered soon! A > little tidbit that you might find interesting- while Dr. Ponseti is > most reknown for his method of correcting clubfoot, he was also a > pioneer in the treatment of scoliosis. I read about that in one of > the media articles about his life. =) > Maybe we should start a new contact database on our board for our > families to list the other medical issues that they have dealt with in > addition to clubfoot (for all their kids- not just clubfooters) as a > first resource for others looking for someone to talk to! > Please keep us posted, . We're here for your family! > Quote Link to comment Share on other sites More sharing options...
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