Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Needing advice from any brace users! Hadley has been complaining A LOT about her brace. She has been in the same brace since January. We just had an apt for an xray, but didn't even have the dr look at how her brace was fitting. We just assumed it was good bc he said it should fit the whole yr she would have to wear it. The brace maker however said she'd have to be fitted in another 6 months after we got the brace(which would be now). We trusted the dr's opinion more though. But now she is complaining a lot about it hurting and being too tight and is taking it off whenever we are not in sight. I'm not sure if it really is too tight or if she just wants it off! We have been loosening it every time she eats bc her belly is full she says. And she also has been having a lot of diarrhea(which is not abnormal for her). I hate to go all the way to her dr to have him say it fits just fine and she's just being a typical 3 yr old who wants freedom from it. Has anybody dealt with anything like this? What are signs that it really is too tight? How often has your children needed new braces or do they wear them for the whole year? We don't know what to do at this point. Any advice would be appreciated Thanks Shauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Hey Shauna... Been there done that! Can you make an appointment with the brace tech? Honestly, they would know better than the doctor as they are the one's that make and fit them. Grace only complains about hers if it is really hurting or if she's sick. I can usually tell the difference in the way she fusses. That said, she's only had one brace that she hated to wear and honestly, it never did fit her right, even though the doctor and brace tech insisted it did. Once I put my foot down and said it needed to be looked at (since she had never fought wearing her other ones), they realized that after about 15 minutes of wear, it would make her rotate, obviously making things worse, and uncomfortable for her as it wouldn't "fit" right. I think at 3 yrs of age, a doctor saying a kiddo will be in the same brace for a year is a bit outrageous. There is A LOT of growth in a year at that age, and if there happens to be any correction or worsening of the spine, that can be considerable over a year too. So it makes NO sense to me for anyone to think a brace will work for an entire year without adaptations. Grace has had this brace since 5/28, so only for 2 months and she wears hers basically 24/7. I am seeing a lot of wear on the inside of the brace with the cushioning, so I couldn't imagine her's lasting a year even if all those other factors didn't happen (growth, change in spine, etc.) Again, my recommendation would be to make an appointment with the brace tech and have her re-measured and compare the new measurements with the old and decide from there. Jane From: srorabeck <srorabeck@...>infantile scoliosis treatment Sent: Mon, August 2, 2010 9:36:46 AMSubject: Brace tight? Needing advice from any brace users!Hadley has been complaining A LOT about her brace. She has been in the same brace since January. We just had an apt for an xray, but didn't even have the dr look at how her brace was fitting. We just assumed it was good bc he said it should fit the whole yr she would have to wear it. The brace maker however said she'd have to be fitted in another 6 months after we got the brace(which would be now). We trusted the dr's opinion more though. But now she is complaining a lot about it hurting and being too tight and is taking it off whenever we are not in sight. I'm not sure if it really is too tight or if she just wants it off! We have been loosening it every time she eats bc her belly is full she says. And she also has been having a lot of diarrhea(which is not abnormal for her). I hate to go all the way to her dr to have him say it fits just fine and she's just being a typical 3 yr old who wants freedom from it. Has anybody dealt with anything like this? What are signs that it really is too tight? How often has your children needed new braces or do they wear them for the whole year? We don't know what to do at this point. Any advice would be appreciated :)ThanksShauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Shauna, I agree with Jane about having the orthotist/brace tech to take a look. The doctor is not the one making the braces and fittting them......at least not 's doc. is tiny so he stayed in his first brace for over a year, BUT "you" know your child and how she grows. If she is complaining something is not right. I always look for pressure points/redness. If they do not go away after 20-30 minutes after the brace is off then something may very well need to be adjusted. I would make an appt to go in. Keep us posted. TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html From: srorabeck <srorabeck@...>infantile scoliosis treatment Sent: Mon, August 2, 2010 11:36:46 AMSubject: Brace tight? Needing advice from any brace users!Hadley has been complaining A LOT about her brace. She has been in the same brace since January. We just had an apt for an xray, but didn't even have the dr look at how her brace was fitting. We just assumed it was good bc he said it should fit the whole yr she would have to wear it. The brace maker however said she'd have to be fitted in another 6 months after we got the brace(which would be now). We trusted the dr's opinion more though. But now she is complaining a lot about it hurting and being too tight and is taking it off whenever we are not in sight. I'm not sure if it really is too tight or if she just wants it off! We have been loosening it every time she eats bc her belly is full she says. And she also has been having a lot of diarrhea(which is not abnormal for her). I hate to go all the way to her dr to have him say it fits just fine and she's just being a typical 3 yr old who wants freedom from it. Has anybody dealt with anything like this? What are signs that it really is too tight? How often has your children needed new braces or do they wear them for the whole year? We don't know what to do at this point. Any advice would be appreciated :)ThanksShauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 I second that, Jane. The orthotist will know more about the actual brace, whereas the doc will know what her xrays are showing. Did you get in-brace xray, or out? Does your orthotist look at the xrays? Our orthotist said Todd's current brace should last until he has gained a certain amt of weight, or about nine months. We also have had one adjustment already to accommodate growth in the interim. We had a night brace before this, which both the doc and the orthotist (not current one) said would last a year. Todd was three and still growing lots and outgrew it but we did not know bc he didn't complain...and we lost some correction. Ugh. Good luck! Peace, ,Mommy to Todd On Aug 2, 2010 12:54 PM, " Jane Bigler " <janemhar@...> wrote:  Hey Shauna...  Been there done that!  Can you make an appointment with the brace tech? Honestly, they would know better than the doctor as they are the one's that make and fit them. Grace only complains about hers if it is really hurting or if she's sick. I can usually tell the difference in the way she fusses.  That said, she's only had one brace that she hated to wear and honestly, it never did fit her right, even though the doctor and brace tech insisted it did. Once I put my foot down and said it needed to be looked at (since she had never fought wearing her other ones), they realized that after about 15 minutes of wear, it would make her rotate, obviously making things worse, and uncomfortable for her as it wouldn't " fit " right.  I think at 3 yrs of age, a doctor saying a kiddo will be in the same brace for a year is a bit outrageous. There is A LOT of growth in a year at that age, and if there happens to be any correction or worsening of the spine, that can be considerable over a year too. So it makes NO sense to me for anyone to think a brace will work for an entire year without adaptations.  Grace has had this brace since 5/28, so only for 2 months and she wears hers basically 24/7. I am seeing a lot of wear on the inside of the brace with the cushioning, so I couldn't imagine her's lasting a year even if all those other factors didn't happen (growth, change in spine, etc.)  Again, my recommendation would be to make an appointment with the brace tech and have her re-measured and compare the new measurements with the old and decide from there. Jane From: srorabeck <srorabeck@...>infantile scoliosis treatment Sent: Mon, August 2, 2010 9:36:46 AMSubject: Brace tight? Needing advice from any brace users!Hadley has been complaining A LOT about her brace. She has... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Hi Shauna, When Noah was 2 1/2-3 1/2 yrs old he got a new brace every 4 months. Once he turned 4 he went every 6 months. Hope that helps!~Noah 5 years old9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free at 8*And Mariella 1 yr old - resolved Infantile Scoliosis infantile scoliosis treatment From: srorabeck@...Date: Mon, 2 Aug 2010 16:36:46 +0000Subject: Brace tight? Needing advice from any brace users!Hadley has been complaining A LOT about her brace. She has been in the same brace since January. We just had an apt for an xray, but didn't even have the dr look at how her brace was fitting. We just assumed it was good bc he said it should fit the whole yr she would have to wear it. The brace maker however said she'd have to be fitted in another 6 months after we got the brace(which would be now). We trusted the dr's opinion more though. But now she is complaining a lot about it hurting and being too tight and is taking it off whenever we are not in sight. I'm not sure if it really is too tight or if she just wants it off! We have been loosening it every time she eats bc her belly is full she says. And she also has been having a lot of diarrhea(which is not abnormal for her). I hate to go all the way to her dr to have him say it fits just fine and she's just being a typical 3 yr old who wants freedom from it. Has anybody dealt with anything like this? What are signs that it really is too tight? How often has your children needed new braces or do they wear them for the whole year? We don't know what to do at this point. Any advice would be appreciated :)ThanksShauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 Hi Shauna, Noelle was in brace for 9 months and it was getting tight especially around the hips/belly. The orthotist said he would be able to bump that out if needed to create a little more room. Ask if you can go to a local ortho to have something like that done if you can.- Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: srorabeck <srorabeck@...>Subject: Brace tight?infantile scoliosis treatment Date: Monday, August 2, 2010, 4:36 PM Needing advice from any brace users!Hadley has been complaining A LOT about her brace. She has been in the same brace since January. We just had an apt for an xray, but didn't even have the dr look at how her brace was fitting. We just assumed it was good bc he said it should fit the whole yr she would have to wear it. The brace maker however said she'd have to be fitted in another 6 months after we got the brace(which would be now). We trusted the dr's opinion more though. But now she is complaining a lot about it hurting and being too tight and is taking it off whenever we are not in sight. I'm not sure if it really is too tight or if she just wants it off! We have been loosening it every time she eats bc her belly is full she says. And she also has been having a lot of diarrhea(which is not abnormal for her). I hate to go all the way to her dr to have him say it fits just fine and she's just being a typical 3 yr old who wants freedom from it. Has anybody dealt with anything like this? What are signs that it really is too tight? How often has your children needed new braces or do they wear them for the whole year? We don't know what to do at this point. Any advice would be appreciated :)ThanksShauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 Not being a doctor ... of course take anything I say with a grain of salt started complaining about her brace 4 months after she got it. I thought she was just being a difficult 2 year old, but then I did notice that it seemed to be rubbing differently. It wasn't that it was really rubbing terribly, or even that others really noticed it much once the brace was off for more than 10 minutes, but it was different ... rubbing in different places primarily. She was always telling me it hurt when we put it on so I'd do the un-velcro then re-velcro and let her think I was changing things and away she'd go. When we had x-rays at the 4 month mark we found that her curve had regressed 20*! Our orthotist is wonderful and modified the brace as best he could while we waited for the new one to come in. The size difference between the two braces is amazing! The new brace has made a world of difference, zero complaints and it is holding her curve back down to where it was in her last cast. She will go back into a cast in the fall but we all decided to wait until the extreme heat of the FL summer passes so she will go back to casting next month. Long story short ... if she wasn't complaining before, then something is different. She's probably grown and it is not comfortable and probably not holding her the way it is intended to. That's just my two cents ... and hindsight tells me to check it sooner rather than later to avoid the regression in curve if in fact it is not holding. Becky mom to currently ~40* also mom to , , Hannah, and > > Needing advice from any brace users! > > Hadley has been complaining A LOT about her brace. She has been in the same brace since January. We just had an apt for an xray, but didn't even have the dr look at how her brace was fitting. We just assumed it was good bc he said it should fit the whole yr she would have to wear it. The brace maker however said she'd have to be fitted in another 6 months after we got the brace(which would be now). We trusted the dr's opinion more though. But now she is complaining a lot about it hurting and being too tight and is taking it off whenever we are not in sight. I'm not sure if it really is too tight or if she just wants it off! We have been loosening it every time she eats bc her belly is full she says. And she also has been having a lot of diarrhea(which is not abnormal for her). I hate to go all the way to her dr to have him say it fits just fine and she's just being a typical 3 yr old who wants freedom from it. Has anybody dealt with anything like this? What are signs that it really is too tight? How often has your children needed new braces or do they wear them for the whole year? > > We don't know what to do at this point. Any advice would be appreciated > > Thanks > Shauna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 Hey Shauna, Im sure you've gotten great advice here, and I havent yet had time to read all posts on this....But, I just wanted to say that I think a new appt. is warranted at this time to be sure she does not loose any ground. You guys have been through too much to go backwards. Please keep me posted. HRH > Needing advice from any brace users! > > Hadley has been complaining A LOT about her brace. She has been in the > same brace since January. We just had an apt for an xray, but didn't even > have the dr look at how her brace was fitting. We just assumed it was good > bc he said it should fit the whole yr she would have to wear it. The brace > maker however said she'd have to be fitted in another 6 months after we > got the brace(which would be now). We trusted the dr's opinion more > though. But now she is complaining a lot about it hurting and being too > tight and is taking it off whenever we are not in sight. I'm not sure if > it really is too tight or if she just wants it off! We have been loosening > it every time she eats bc her belly is full she says. And she also has > been having a lot of diarrhea(which is not abnormal for her). I hate to go > all the way to her dr to have him say it fits just fine and she's just > being a typical 3 yr old who wants freedom from it. Has anybody dealt > with anything like this? What are signs that it really is too tight? How > often has your children needed new braces or do they wear them for the > whole year? > > We don't know what to do at this point. Any advice would be appreciated > > Thanks > Shauna > > Quote Link to comment Share on other sites More sharing options...
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