Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Im sorry I cant for the life of me remember your name.... I hope I am referring to the right baby as well! If I recall correctly, your daughter has foot braces right? If I am remembering the right person, I had a few questions for you if you dont mind... has periodic weakness in his legs/ankles (it goes from so severe he can barely walk more than a few steps at a time to being non existent, and him being surprisingly strong). It has been mentioned a few times that foot braces may be a good idea for his weaker periods, however nobody seems to follow up on this... Who is it exactly that made that decision for your daughter, and who fitted her for the braces? We have a physiotherapy consult tommorrow, and I am planning on talking to them about it, we are also on a waiting list for Occupational therapy as well... I just realised we have had 3 different doctors mention this as a possible option for him, but none of them have gone any further than to mention it... who is it that makes that call? Thanks for you advice! Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 I am not who you were referring to, but I will throw in my 2 cents anyway My son has the braces that you are talking about. The ones that go up the calf are called Dafo's (short for dynamic ankle foot orthodic OR dorsal ankle foot orthotic) and the ones that only support the foot are called afo's (ankle foot orthotic). My son's physical therapist made the decision for him to have them AND she had them made. This involved casting him (right at our home and only took about 30 minutes) and then she sent the casts away as guides for the company to custom make his braces. My son does not have leg weekness, his feet turn in due to a stroke he suffered at birth, but I can certainly see where these would be helpful to little ones with tired legs. On another note, my insurance pays for them in full, as does medicaid if you have that. It is a good thing too, they cost about $800.00 I hope this helps! Beth > > Im sorry I cant for the life of me remember your name.... > I hope I am referring to the right baby as well! > If I recall correctly, your daughter has foot braces right? > If I am remembering the right person, I had a few questions for you > if you dont mind... > has periodic weakness in his legs/ankles (it goes from so > severe he can barely walk more than a few steps at a time to being > non existent, and him being surprisingly strong). It has been > mentioned a few times that foot braces may be a good idea for his > weaker periods, however nobody seems to follow up on this... > Who is it exactly that made that decision for your daughter, and who > fitted her for the braces? > We have a physiotherapy consult tommorrow, and I am planning on > talking to them about it, we are also on a waiting list for > Occupational therapy as well... > I just realised we have had 3 different doctors mention this as a > possible option for him, but none of them have gone any further than > to mention it... who is it that makes that call? > Thanks for you advice! > Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 800$ wow! Were in Canada, but im not sure if its covered or not... luckily we have supplimental insurance that will likely pick up the brunt of the bill... how long did it take to get the braces once they were sent out? has 2 problems related to the weakness, one is that when his legs get bad, his feet turn in (this was the first sign there was any problem with him), sometimes ALOT.. and he tends to keep his toes curled tightly underneath... this causes him to trip alot. the other is that his ankles almost 'give out' under him, like they just suddenly refuse to hold him anymore... I am glad to hear were on the right path by seeing the physiotherapist! Thanks! Keely > > > > Im sorry I cant for the life of me remember your name.... > > I hope I am referring to the right baby as well! > > If I recall correctly, your daughter has foot braces right? > > If I am remembering the right person, I had a few questions for you > > if you dont mind... > > has periodic weakness in his legs/ankles (it goes from so > > severe he can barely walk more than a few steps at a time to being > > non existent, and him being surprisingly strong). It has been > > mentioned a few times that foot braces may be a good idea for his > > weaker periods, however nobody seems to follow up on this... > > Who is it exactly that made that decision for your daughter, and > who > > fitted her for the braces? > > We have a physiotherapy consult tommorrow, and I am planning on > > talking to them about it, we are also on a waiting list for > > Occupational therapy as well... > > I just realised we have had 3 different doctors mention this as a > > possible option for him, but none of them have gone any further > than > > to mention it... who is it that makes that call? > > Thanks for you advice! > > Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 We got ours about a month after we sent them out. Your physiotherapist should be of great help! I know nothing about Canadian medical issues EXCEPT that you guys get your meds a whole lot cheaper than we do! What part of Canada are you from? I am right over the border in Vermont. Beth > > > > > > Im sorry I cant for the life of me remember your name.... > > > I hope I am referring to the right baby as well! > > > If I recall correctly, your daughter has foot braces right? > > > If I am remembering the right person, I had a few questions for > you > > > if you dont mind... > > > has periodic weakness in his legs/ankles (it goes from > so > > > severe he can barely walk more than a few steps at a time to > being > > > non existent, and him being surprisingly strong). It has been > > > mentioned a few times that foot braces may be a good idea for > his > > > weaker periods, however nobody seems to follow up on this... > > > Who is it exactly that made that decision for your daughter, and > > who > > > fitted her for the braces? > > > We have a physiotherapy consult tommorrow, and I am planning on > > > talking to them about it, we are also on a waiting list for > > > Occupational therapy as well... > > > I just realised we have had 3 different doctors mention this as > a > > > possible option for him, but none of them have gone any further > > than > > > to mention it... who is it that makes that call? > > > Thanks for you advice! > > > Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 You can get more information at www.dafo.com if you are interested Beth > > > > > > Im sorry I cant for the life of me remember your name.... > > > I hope I am referring to the right baby as well! > > > If I recall correctly, your daughter has foot braces right? > > > If I am remembering the right person, I had a few questions for > you > > > if you dont mind... > > > has periodic weakness in his legs/ankles (it goes from > so > > > severe he can barely walk more than a few steps at a time to > being > > > non existent, and him being surprisingly strong). It has been > > > mentioned a few times that foot braces may be a good idea for > his > > > weaker periods, however nobody seems to follow up on this... > > > Who is it exactly that made that decision for your daughter, and > > who > > > fitted her for the braces? > > > We have a physiotherapy consult tommorrow, and I am planning on > > > talking to them about it, we are also on a waiting list for > > > Occupational therapy as well... > > > I just realised we have had 3 different doctors mention this as > a > > > possible option for him, but none of them have gone any further > > than > > > to mention it... who is it that makes that call? > > > Thanks for you advice! > > > Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Im not sure our meds are all that much cheaper... but i know with the exchange rate, it would probably be cheaper for Americans to buy them and bring them over the border... Canadians for the most part dont get perscription meds covered by our health system. (people who qualify are eligible for partial coverage through something called pharmacare though, sort of a financial assistance). > > > > > > > > Im sorry I cant for the life of me remember your name.... > > > > I hope I am referring to the right baby as well! > > > > If I recall correctly, your daughter has foot braces right? > > > > If I am remembering the right person, I had a few questions for > > you > > > > if you dont mind... > > > > has periodic weakness in his legs/ankles (it goes from > > so > > > > severe he can barely walk more than a few steps at a time to > > being > > > > non existent, and him being surprisingly strong). It has been > > > > mentioned a few times that foot braces may be a good idea for > > his > > > > weaker periods, however nobody seems to follow up on this... > > > > Who is it exactly that made that decision for your daughter, > and > > > who > > > > fitted her for the braces? > > > > We have a physiotherapy consult tommorrow, and I am planning on > > > > talking to them about it, we are also on a waiting list for > > > > Occupational therapy as well... > > > > I just realised we have had 3 different doctors mention this as > > a > > > > possible option for him, but none of them have gone any further > > > than > > > > to mention it... who is it that makes that call? > > > > Thanks for you advice! > > > > Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Zipporrah (now 12 months) got her leg braces (SMO's) at 10 months and the person to decide was her Physiatrist. For Asenath the person to decide was her Physical Therapist, but her Pediatrician had to fill out a prescription for them. This means there are several possible people that can decide. Try to talk to the doctors again and ask them the time frame they were considering putting your child in leg braces. They may have wanted to wait to see if it is necessary. At first it was only a consideration for Zipporrah as well, but then another episode caused her to stand on her tip toes, the tops of her feet, and the sides of her feet rather than the bottom of her feet. If the issue is weakness, the leg braces may not really help, but actually cause more issues as the braces and added shoes only cause more weight for the child to have to carry around and of course that in turn is harder for them. On Zipporrah's weaker times I actually try to limit her leg brace wearing. Try to find out the reason WHY they think your child needs them and make sure the reasons fit the necessity. Leg braces are expensive and without insurance cost in between $1500.00 for little ones to $2500.00 for DAFO's for a three year old. Feel free to ask if you have any other questions. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) s Mom... > > > Im sorry I cant for the life of me remember your name.... > I hope I am referring to the right baby as well! > If I recall correctly, your daughter has foot braces right? > If I am remembering the right person, I had a few questions for you > if you dont mind... > has periodic weakness in his legs/ankles (it goes from so > severe he can barely walk more than a few steps at a time to being > non existent, and him being surprisingly strong). It has been > mentioned a few times that foot braces may be a good idea for his > weaker periods, however nobody seems to follow up on this... > Who is it exactly that made that decision for your daughter, and who > fitted her for the braces? > We have a physiotherapy consult tommorrow, and I am planning on > talking to them about it, we are also on a waiting list for > Occupational therapy as well... > I just realised we have had 3 different doctors mention this as a > possible option for him, but none of them have gone any further than > to mention it... who is it that makes that call? > Thanks for you advice! > Keely > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 I just wanted to let you know that leg braces do come in a rainbow of colors, so your child could choose their favorite color for their leg braces. With some companies you can also get different strap and padding colors/patterns. Keep Smiling, Nikki > > Im sorry I cant for the life of me remember your name.... > I hope I am referring to the right baby as well! > If I recall correctly, your daughter has foot braces right? > If I am remembering the right person, I had a few questions for you > if you dont mind... > has periodic weakness in his legs/ankles (it goes from so > severe he can barely walk more than a few steps at a time to being > non existent, and him being surprisingly strong). It has been > mentioned a few times that foot braces may be a good idea for his > weaker periods, however nobody seems to follow up on this... > Who is it exactly that made that decision for your daughter, and who > fitted her for the braces? > We have a physiotherapy consult tommorrow, and I am planning on > talking to them about it, we are also on a waiting list for > Occupational therapy as well... > I just realised we have had 3 different doctors mention this as a > possible option for him, but none of them have gone any further than > to mention it... who is it that makes that call? > Thanks for you advice! > Keely Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 My daughter Grace also has foot supports, to help with ankle weakness. They have made a world of difference with her, and she loves to wear them. We have noticed a dramatic decrease in falliing and tripping. She also rarely complaines of leg pain, when she has worn them all day. She was actually referred to a pediatric orthopedic doctor for her problems. Her orthopedic doctor wrote the script but we had to take her to an orthodic to have them fitted. The whole process took about three weeks. I guess we got a deal because Grace's only cost about $350, compared to others who reported 800-1000 for there childrens. Oh if you do get them, you will need to get him new shoes. You will need to wait until he has them to have the new shoes fitted. Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
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