Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Sue, Have they worked him up for tethered cord of the spine? Similar symptoms have appeared with that condition. Hoping you get the answer for your sons condition. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Eileen, Thanks for that i will look into it, it's nice to have something to go on even if there's a chance it's not the right thing. Sue Sue The DownSouth Support Group http://groups.yahoo.com/group/downsouthsupportgroup downsouthgroup@... >From: godbetheglory@... >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: Hi there, >Date: Wed, 28 Jan 2004 16:27:52 EST > >Sue, > > Have they worked him up for tethered cord of the spine? Similar >symptoms >have appeared with that condition. >Hoping you get the answer for your sons condition. > >Eileen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 The only thing I can help you with is the hip displacing. My son has bi cf and when he was born they did a sonogram to check if his hips were displaced beacuse it can be associated to cf. Did they do a sonogram on Elliot when he was born? Who is your orthopedist? Good luck and I hope all gets better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Hi, I was interested to read your mail on the fact that hip displacement can be related to CF. Elliott did not have any tests done when he was born for his hip and they only started looking into it last year when i mentioned that one leg was longer than the other!! His orthopedic surgeon is Dr who is based at Exeter orthopedic hospital. The problem we have got is that his Down's Syndrome seems to cloud the judgement of his conditions. We have been told that these problems will need correcting but he won't start treatment until he's weight baring or standing and as far as i can see he is not gonna do that unless some of these problems are sorted out first! But i will keep on fighting as i normally do and hopefully we will get some answers for the future. Sue and Elliott ( Bi CF ) Sue The DownSouth Support Group http://groups.yahoo.com/group/downsouthsupportgroup downsouthgroup@... >From: yudric@... >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: Hi there, >Date: Thu, 29 Jan 2004 09:57:16 EST > >The only thing I can help you with is the hip displacing. My son has bi cf >and when he was born they did a sonogram to check if his hips were >displaced >beacuse it can be associated to cf. Did they do a sonogram on Elliot when >he was >born? Who is your orthopedist? >Good luck and I hope all gets better. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 I thought all c/f babies had to have their hips tested. My son did within a few weeks of being born and they diagnosed bi c/f at 20 week scan. They said then he would have to have his hips xrayed. His were fine. Rach -- Re: Hi there, >Date: Thu, 29 Jan 2004 09:57:16 EST > >The only thing I can help you with is the hip displacing. My son has bi cf >and when he was born they did a sonogram to check if his hips were >displaced >beacuse it can be associated to cf. Did they do a sonogram on Elliot when >he was >born? Who is your orthopedist? >Good luck and I hope all gets better. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 All babies, cf or not, are supposed to be at least physically examined for hip displaysia (displacement) at every check up from birth to 6 months or so. The physical check involves the doctor grasping both feet and putting them together, then rotating the hips up and out (by bending the knee). All of my children have had this done, but Kai. my cf baby. had it done at least once a month for 9 months by every doctor he saw except his allergist! I could be mistaken, but I believe most doctors only do x-rays if they feel a click when doing the physical exam. Angel Re: Hi there, >Date: Thu, 29 Jan 2004 09:57:16 EST > >The only thing I can help you with is the hip displacing. My son has bi cf >and when he was born they did a sonogram to check if his hips were >displaced >beacuse it can be associated to cf. Did they do a sonogram on Elliot when >he was >born? Who is your orthopedist? >Good luck and I hope all gets better. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 >All babies, cf or not, are supposed to be at least physically examined for hip displaysia (displacement) at every check up from birth to 6 >months or so. The physical check involves the doctor grasping both feet and putting them together, then rotating the hips up and out (by >bending the knee). All of my children have had this done, but Kai. my cf baby. had it done at least once a month for 9 months by every >doctor he saw except his allergist! I could be mistaken, but I believe most doctors only do x-rays if they feel a click when doing the >physical exam. this is the test they did on my firstborn in the OR while he was screaming his head off after just being ripped from my belly. I was so pissed about that! They checked all these stupid things on him and he just cried and cried... for minutes. I understand doing it... but it wasn't a life and death thing that needed to be done on a freshly surgically born naked baby. What exactly would they do if they'd heard that *click* right then anyway? grrrr.... my second was a footling breech preemie so he had an even worse experience :~{ Funny, you'd think it was policy?? Well with my third, when it became apparent it was going to be another section (after a third full labor) I handed them a c-section birth plan and in the plan I'd specifically asked that they postpone the standard newborn exam till after we'd had a chance to meet and settle in. They had absolutely no problem with that and when Darbi was born she was immediately wrapped in a receiving blanket, not even swaddled after a quick cursory exam (check to see she's breathing, suck a little I guess. it didn't take but 20 seconds). They handed her to me and she didn't have the newborn exam for quite a while after that, I wonder if it wasn't the next day before she was examined but I don't remember specifically, probably later that afternoon when I was all dopey on morphine and don't remember. As I was watching her being quickly checked I noticed her foot. Which of course was a surprise. But they didn't check it out then... I'm sure they noticed too but they just let it go and gave her to me all vernixy and soft and warm... I've never been able to hold one of my newborns like that and it was just so, so nice to not hear her cry and scream while they examined her hips and get to smell her freshly born self... She was sooooo quiet and peaceful. Very different from my first's birth. I recommend taking the time to write a backup surgical birth plan and ask for something like this - I think it made a huge difference for both baby and I experienc wise. I just thought it was interesting... if they can let an obvious clubfoot go (even positional) like that they can surely let the hip exam go for a few hours. Our family dog had hip dysplacia. he had surgery to cut the tendons so he could walk better. Still left him stiff and arthritic. Kori At 10:55 AM 1/29/04, you wrote: >Angel > > Re: Hi there, > >Date: Thu, 29 Jan 2004 09:57:16 EST > > > >The only thing I can help you with is the hip displacing. My son has bi cf > >and when he was born they did a sonogram to check if his hips were > >displaced > >beacuse it can be associated to cf. Did they do a sonogram on Elliot when > >he was > >born? Who is your orthopedist? > >Good luck and I hope all gets better. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Hi, Sue, I'm glad you joined the group and hope you get some good help and information. I recall seeing an article on joint laxity and its relationship to clubfoot and hip dislocation. I'm afraid it might not be of any practical or specific help, since the abstract is so short, and the focus seems more on etiology than anything treatment related, but your discussion made me think of it, and I thought perhaps it might give you some leads. Here's a shortened link to it (extra long links don't work in this site's emails).. http://makeashorterlink.com/?R16E23C37 Maybe one of the physician-authors could be a resource for you .. The site where the abstract is listed is the (U.S.) National Library of Medicine, or PubMed. I've found it a very helpful source for info in medical journal articles. Here's the direct link to it: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi With best wishes for you and Elliott, and born 6/29/00, left clubfoot > Hi i was recommended to post by a member of another chat group on > club feet as i am trying to possibly find some answers to my sons > conditions. Elliott is 3 1/2 years old and was born with bilateral > talipes and Down's Syndrome ( and other complaints ) > his talipes appear to have been corrected with various methods eg > plaster cast, strapping etc. Now though as he's got older he has > developed other conditions from the waist down. His left hip is > slowly displacing, his muscle tone from the waist down is non > existant, his knees are not in joint, in fact 1 knee cap is sitting > on the outside of his knee and his tibias are inwardly turning. With > all this in mind he cannot weight bare and is confined to a wheel > chair for mobility, although he can bum shuffle in his own way. > Has anyone experienced this? And do you think that any of these are > related to talipes? > Whilst i know that children with Down's have low muscle tone in > general i know that this is NOT the cause for Elliott as his muscle > tone from his waist up is extremely good. He is baffling his > orthopedic surgeon and physio as they say that they have never > experienced this in their life span as professionals. > I would be grateful for any advice or help on this matter. Thankyou > for reading this. > > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Simon is now 11 months old, and he has never had any xrays done. They did check his hips everytime he was seen > >Reply-To: nosurgery4clubfoot >To: <nosurgery4clubfoot > >Subject: Re: Hi there, >Date: Thu, 29 Jan 2004 16:27:12 +0000 (GMT Standard Time) > > >I thought all c/f babies had to have their hips tested. My son did within a >few weeks of being born and they diagnosed bi c/f at 20 week scan. They >said >then he would have to have his hips xrayed. His were fine. > >Rach >-- Re: Hi there, > >Date: Thu, 29 Jan 2004 09:57:16 EST > > > >The only thing I can help you with is the hip displacing. My son has bi >cf > >and when he was born they did a sonogram to check if his hips were > >displaced > >beacuse it can be associated to cf. Did they do a sonogram on Elliot when > >he was > >born? Who is your orthopedist? > >Good luck and I hope all gets better. > > > > > > Quote Link to comment Share on other sites More sharing options...
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