Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Maureen- My son david has the most beautiful ballerina feet-he has perfect turnout into the 2nd position. I haven't tried to see if they can go all the way around. Our doctor was a little concerned and had our bar reduced to 55 degrees-however, our son could not sleep that way so we put it back to 70. I am in the process of emailing Dr P. I can't offer any advice or if this is normal because to me it seems a little strange that 's feet are so flexible(his hamstrings are the same way. I just wanted to let you know that you aren't the only one experiencing this. Hopefully some more experienced moms/dads can pipe in! kathleen mom to 8/28/04 bcf fab 14/7 > hi there! > every so often, i hear that the use of dbb was stopped due to loose > ligaments. what does that mean? > the reason why i'm asking is that we're starting to get concerned with > naomi's feet, we're able to twist them right around so that her toes are > facing back and her heels are at the front... is this normal for babies > being treated for clubfeet?? are her ligaments too loose? > also, she went for her 18 month check up this week and she has gone from > over the 100th percentile in height to the 40th... it was mentioned that > cf babies have shorter legs... is this true? > thanks for your help, > maureen > naomi bcf, dbb nights Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Maureen- My son david has the most beautiful ballerina feet-he has perfect turnout into the 2nd position. I haven't tried to see if they can go all the way around. Our doctor was a little concerned and had our bar reduced to 55 degrees-however, our son could not sleep that way so we put it back to 70. I am in the process of emailing Dr P. I can't offer any advice or if this is normal because to me it seems a little strange that 's feet are so flexible(his hamstrings are the same way. I just wanted to let you know that you aren't the only one experiencing this. Hopefully some more experienced moms/dads can pipe in! kathleen mom to 8/28/04 bcf fab 14/7 > hi there! > every so often, i hear that the use of dbb was stopped due to loose > ligaments. what does that mean? > the reason why i'm asking is that we're starting to get concerned with > naomi's feet, we're able to twist them right around so that her toes are > facing back and her heels are at the front... is this normal for babies > being treated for clubfeet?? are her ligaments too loose? > also, she went for her 18 month check up this week and she has gone from > over the 100th percentile in height to the 40th... it was mentioned that > cf babies have shorter legs... is this true? > thanks for your help, > maureen > naomi bcf, dbb nights Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Hi Maureen, I don't know anything about discontinuing the use of the DBB because of loose ligaments, but it does sound like Naomi's are very, very loose and perhaps you need to discuss this with your doc (or, if you have already, get another opinion). Our son's ligaments were tight and we had to do exercises every day to loosen them, so our situation was the opposite. I wanted to reply to your other concern, however, about Naomi's growth. Our daughter, who was NOT born with clubfoot (her brother was) was in the 100th percentile for height and weight when she was born, but by her one-year check-up had dropped down to the 50th percentile for height and below the 20th percentile for weight. She was still completely healthy and the doc just said kids develop at different speeds, and that they're all about the same size by age five. Looking at the kindergarten class years later, I could see that he was correct. As for clubfoot children having shorter legs, I've never heard that, only that they tend to have less- developed calf muscles. Our son's legs seem about average, and I don't even think his calf muscles are small; I think they appear small in comparison to his HUGE thigh muscles, which we think are the result of all those weeks of lifting those casts! Best wishes to you and Naomi, Pamela Karydas (mom to Dinos, BCF, 5 June 2000, treated by Drs. Feldman and Ponseti) > hi there! > every so often, i hear that the use of dbb was stopped due to loose > ligaments. what does that mean? > the reason why i'm asking is that we're starting to get concerned with > naomi's feet, we're able to twist them right around so that her toes are > facing back and her heels are at the front... is this normal for babies > being treated for clubfeet?? are her ligaments too loose? > also, she went for her 18 month check up this week and she has gone from > over the 100th percentile in height to the 40th... it was mentioned that > cf babies have shorter legs... is this true? > thanks for your help, > maureen > naomi bcf, dbb nights Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Hi Maureen, I don't know anything about discontinuing the use of the DBB because of loose ligaments, but it does sound like Naomi's are very, very loose and perhaps you need to discuss this with your doc (or, if you have already, get another opinion). Our son's ligaments were tight and we had to do exercises every day to loosen them, so our situation was the opposite. I wanted to reply to your other concern, however, about Naomi's growth. Our daughter, who was NOT born with clubfoot (her brother was) was in the 100th percentile for height and weight when she was born, but by her one-year check-up had dropped down to the 50th percentile for height and below the 20th percentile for weight. She was still completely healthy and the doc just said kids develop at different speeds, and that they're all about the same size by age five. Looking at the kindergarten class years later, I could see that he was correct. As for clubfoot children having shorter legs, I've never heard that, only that they tend to have less- developed calf muscles. Our son's legs seem about average, and I don't even think his calf muscles are small; I think they appear small in comparison to his HUGE thigh muscles, which we think are the result of all those weeks of lifting those casts! Best wishes to you and Naomi, Pamela Karydas (mom to Dinos, BCF, 5 June 2000, treated by Drs. Feldman and Ponseti) > hi there! > every so often, i hear that the use of dbb was stopped due to loose > ligaments. what does that mean? > the reason why i'm asking is that we're starting to get concerned with > naomi's feet, we're able to twist them right around so that her toes are > facing back and her heels are at the front... is this normal for babies > being treated for clubfeet?? are her ligaments too loose? > also, she went for her 18 month check up this week and she has gone from > over the 100th percentile in height to the 40th... it was mentioned that > cf babies have shorter legs... is this true? > thanks for your help, > maureen > naomi bcf, dbb nights Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Hi all, Though I'm not very active in posting here, I do follow along with the regular emails that are sent out by all of you. It's a continual source of comfort to know that one is not alone... A couple of questions if I may? 1. My latest CT-scans have shown little change in the sarcoidosis in my chest (neither better nor worse) over the past 6 months, and my rheumatologist would like to put me back on meds. I reacted badly to the prednisone this summer (anxiety and depression), so now she would like to try cyclosporine instead. I was wondering if anyone had any opinions or experiences regarding cyclosporine? I'm a bit apprehensive as a side effect can include seizures, and I've already had 2 in the past year (I'm on meds for that at the moment) - so part of me feels that it might be worth the depression of prednisone to avoid further seizures. 2. For the past couple of months I've been having a pain in my head - on the left side, around the temple and over the ear. It's not like a headache, as it only lasts 10-20 seconds in duration, and while it is uncomfortable it is not excruciating by any means. I now suspect that the source is actually behind my left eyeball, and the frequency seems to be more often (i.e. 1-2 times an hour while I'm awake, although not so bad today funny enough). Does this sound familiar to anybody? 3. Both my neurologist and rheumatologist have suggested a lumbar puncture to take some more tests. I'm really not too happy about this idea. I had a head MRI on Tuesday and will meet with neurologist on Monday (they are looking for signs of neurosarcoidosis and an explanation for my seizures). My lung specialist didn't think a lumbar was warranted unless there were clear indications on the MRI for one. So a couple of questions here - is a lumbar as bad as it seems? and how would the results of a lumbar change my current treatment anyway? Thanks in advance, and best wishes to all. /D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 1. My latest CT-scans have shown little change in the sarcoidosis in my chest (neither better nor worse) over the past 6 months, and my rheumatologist would like to put me back on meds. I reacted badly to the prednisone this summer (anxiety and depression), so now she would like to try cyclosporine instead. Darian, Cyclosporine hasn't shown to be real effective in treating sarc. Imuran, Methotrexate, Plaquenil would be better choices. If those don't work, then one of the TNF drugs-- Enbrel, remicade, Humira are also choices. I was wondering if anyone had any opinions or experiences regarding cyclosporine? I'm a bit apprehensive as a side effect can include seizures, and I've already had 2 in the past year (I'm on meds for that at the moment) - so part of me feels that it might be worth the depression of prednisone to avoid further seizures. 2. For the past couple of months I've been having a pain in my head - on the left side, around the temple and over the ear. It's not like a headache, as it only lasts 10-20 seconds in duration, and while it is uncomfortable it is not excruciating by any means. I now suspect that the source is actually behind my left eyeball, and the frequency seems to be more often (i.e. 1-2 times an hour while I'm awake, although not so bad today funny enough). Does this sound familiar to anybody? Sounds a bit like a migraine headache, or possibly a bit of vasculitis. Have you seen an ophthalmologist? Do you have any optic nerve involvement? I have had this experience, and it is for me a migraine. 3. Both my neurologist and rheumatologist have suggested a lumbar puncture to take some more tests. I'm really not too happy about this idea. I had a head MRI on Tuesday and will meet with neurologist on Monday (they are looking for signs of neurosarcoidosis and an explanation for my seizures). My lung specialist didn't think a lumbar was warranted unless there were clear indications on the MRI for one. So a couple of questions here - is a lumbar as bad as it seems? and how would the results of a lumbar change my current treatment anyway? It would make sense to get the spinal tap. It's really not bad--you just want to make sure you're well hydrated before and after the tap. The spinal column is self enclosed, so if you aren't well hydrated, it's harder to get the specimin. We tell people to lay low for an hour or more after the tap, so that the injection site can close easily. Also, no rapid movements or quick turns of the head for a day or so, so that you don't get that off balance feeling. It really isn't a bad procedure. One of the things that it would do is rule out MS, or Lupus. They both have specific bands of protein in the spinal fluid, that we don't get in ours. So it is used to RULE OUT other diseases or problems, so that they can get to the core problem. Also, it would show them if you have meningitis or some other inflammation or infection that is causing the seizures. Since you are having seizures-- get the tap. It could change the treatment drastically--if you have MS, then they can treat that-- and get you back to higher function. Thanks for checking in, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 I had 3 spinal taps and each one i had they got worse and worse with the results they found in the spinal fluid. But along with the MRI and liver biopsy and lung function test is what confirmed my dx of NS hugs and blessings in pa Quote Link to comment Share on other sites More sharing options...
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