Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi Angie, Have you had a chance to read “Growth as a corrective force in the early treatment of progressive infantile scoliosis,” by Mehta? It can be found on the Resource Page of www.infantilescoliosis.org May I also recommend that you view “A New Direction,” DVD, which will help you to better understand the principles of this gentle, corrective method. Do you know if your surgeon is applying EDF (elongation, derotation, flexion) casts on the correct equipment? An edf cast that is properly applied should not cause suffering and depression. Does the cast look similar to the one in the article? HRH From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Take a guess? Sent: Sunday, May 17, 2009 9:13 AM To: infantile_scoliosis Subject: New to group-sorta Hi all, I have been a " member " of this group for a little bit now - maybe a month or so. I have been in and out but haven't had a chance to post our story. So here goes: Isabel is currently 29 months (tomorrow ) We noticed her back was curving around 3 months. Her pedi hadn't noticed it. When we noticed it he referred us to a ped. ortho. at Miami Children's Hospital. This was at about 6 months. He told us to basically " wait and see. " That as she starts being more mobile, the muscles in her back could cause her spine to straighten out. I was looking for a more proactive approach but my husband wasn't. He wanted to avoid anything if possible. I understood his logic and let it go. PLUS, everytime we mentioned she had scoliosis to someone, they recommended this guy. This guy is supposedly the BEST of the BEST in Florida. Someone (an adult Ortho) even said he was among the best two in the nation. So we took his word and waited and waited. We had appointments every 3-6 months. This past December (08) she turned 2. On her bday we took her for an appt. Her back had progressed from ~30something to late 60s in 6 months! So he (the ortho) then suggested casting. He didn't explain anything as to how the cast would be and I wasn't there (had a newborn 12/2 at home) so I didn't ask everything I wanted to. Anyway, they casted her 2/2/08 with her first cast. Her back was at 77 degrees then. Noone ever mentioned to me that her organs could be compromised or any consequence of her scoliosis. I was severely depressed to see her suffering so much after the first cast. She couldn't walk and was just miserable. But we took her to her weekly PT and they helped with her balance. I am severely disappointed in the information the doctors failed to give. So, she was in her first cast for 6 weeks. They knocked her out 3/18 and replaced it. Her back was at 34 degrees 2 weeks after the first cast. They removed the cast 4/28 and the ortho told us that 34 degrees was as good as it was going to get and that we would maintain it with a brace. He even had them expedite her brace and we had her Milwaukee brace by 5/1 (Friday). She hated hated hated the brace bc she knew it could come on and off. BUT we did get to put out the little pool and she had a blast. She had a super hard time learning how to walk again (without the cast) and seemed super uncomfortable in her own skin. Then we went to see the ortho again on the following Tuesday 5/5 and her back had gone from 34 to 66!!!!! In a week!!! So her third cast was put on 5/6 and she seems so much happier IN the cast then out of it. She does anything any other rambunctious toddler does, including touching her toes! A week later her back was back at 27 degrees in the cast. So here we are...3rd cast, 27 degrees, appt next tuesday again, still not thrilled but hoping to avoid surgery. The dr seems to think that regardless we will have back surgery when she is 8-10 yrs old. I am relying on the little bit of faith I've got left to hope she won't. I am super glad to have found this group. ~Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 , Angie posted some pics in the new picture section. ~Krista Subject: RE: AngieTo: infantile_scoliosis Date: Monday, May 18, 2009, 10:13 PM Hi Angie, Have you had a chance to read “Growth as a corrective force in the early treatment of progressive infantile scoliosis,†by Mehta? It can be found on the Resource Page of www.infantilescolio sis.org May I also recommend that you view “A New Direction,†DVD, which will help you to better understand the principles of this gentle, corrective method. Do you know if your surgeon is applying EDF (elongation, derotation, flexion) casts on the correct equipment? An edf cast that is properly applied should not cause suffering and depression. Does the cast look similar to the one in the article? HRH From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of Take a guess?Sent: Sunday, May 17, 2009 9:13 AMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] New to group-sorta Hi all,I have been a "member" of this group for a little bit now - maybe a month or so. I have been in and out but haven't had a chance to post our story. So here goes:Isabel is currently 29 months (tomorrow ) We noticed her back was curving around 3 months. Her pedi hadn't noticed it. When we noticed it he referred us to a ped. ortho. at Miami Children's Hospital. This was at about 6 months. He told us to basically "wait and see." That as she starts being more mobile, the muscles in her back could cause her spine to straighten out. I was looking for a more proactive approach but my husband wasn't. He wanted to avoid anything if possible. I understood his logic and let it go. PLUS, everytime we mentioned she had scoliosis to someone, they recommended this guy. This guy is supposedly the BEST of the BEST in Florida. Someone (an adult Ortho) even said he was among the best two in the nation. So we took his word and waited and waited. We had appointments every 3-6 months. This past December (08) she turned 2. On her bday we took her for an appt. Her back had progressed from ~30something to late 60s in 6 months! So he (the ortho) then suggested casting. He didn't explain anything as to how the cast would be and I wasn't there (had a newborn 12/2 at home) so I didn't ask everything I wanted to. Anyway, they casted her 2/2/08 with her first cast. Her back was at 77 degrees then. Noone ever mentioned to me that her organs could be compromised or any consequence of her scoliosis. I was severely depressed to see her suffering so much after the first cast. She couldn't walk and was just miserable. But we took her to her weekly PT and they helped with her balance. I am severely disappointed in the information the doctors failed to give. So, she was in her first cast for 6 weeks. They knocked her out 3/18 and replaced it. Her back was at 34 degrees 2 weeks after the first cast. They removed the cast 4/28 and the ortho told us that 34 degrees was as good as it was going to get and that we would maintain it with a brace. He even had them expedite her brace and we had her Milwaukee brace by 5/1 (Friday). She hated hated hated the brace bc she knew it could come on and off. BUT we did get to put out the little pool and she had a blast. She had a super hard time learning how to walk again (without the cast) and seemed super uncomfortable in her own skin. Then we went to see the ortho again on the following Tuesday 5/5 and her back had gone from 34 to 66!!!!! In a week!!! So her third cast was put on 5/6 and she seems so much happier IN the cast then out of it. She does anything any other rambunctious toddler does, including touching her toes! A week later her back was back at 27 degrees in the cast. So here we are...3rd cast, 27 degrees, appt next tuesday again, still not thrilled but hoping to avoid surgery. The dr seems to think that regardless we will have back surgery when she is 8-10 yrs old. I am relying on the little bit of faith I've got left to hope she won't. I am super glad to have found this group.~Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi Angie, I am so glad that you found ISOP and CAST. Mehtas Early Treatment Method with EDF (elongation, derotation, flexion) casting (plaster of Paris) is sort of new in the medical world, so it does not surprise me to see a cast like this. I am not a doctor, but its my opinion that the cast would be more effective in correcting rotation/the main thoracic curve, improving neck tilt, and that she would have a better quality of life, if you found a Mehta trained pediatric surgeon who had the correct sized, 3-dimensional casting frame and some experience. The bottom line is that ET with EDF cannot be applied properly without the frame and proper training on Mehtas modified version of EDF. Please read the article and watch the DVD, as they are essential tools in understanding the principles of Early Treatment. I can cover a lot more ground on the phone, should you ever want to discuss. My cell Mountain time. Sincerely, HRH () From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Take a guess? Sent: Sunday, May 17, 2009 7:38 PM To: infantile_scoliosis Subject: Re: New to group-sorta Her cast also includes the neck bc her neck tilts significantly to the left. Since birth, her head has been tilted. They thought it was torticollis but it is really just her neck compensating for her back. Her vertebrae are all perfectly shaped. The first cast had a small hole on her left abdomen to account for rotation. This new one (new pics will be up soon) has a huge hole in the abdomen area almost in the middle. This helps a whole lot with her eating since she now has room. I am not sure what her rotation is but it is a big rotation. I have pictures to post of that as well. How will my insurance cover Shriners if its in a different state? > > > > > > From: Take a guess? <angie815@> > > Subject: New to group-sorta > > To: infantile_scoliosis > > Date: Sunday, May 17, 2009, 11:13 AM > > > > > > > > > > > > > > > > > > Hi all, > > > > I have been a " member " of this group for a little bit now - maybe a month or so. I have been in and out but haven't had a chance to post our story. So here goes: > > > > Isabel is currently 29 months (tomorrow ) We noticed her back was curving around 3 months. Her pedi hadn't noticed it. When we noticed it he referred us to a ped. ortho. at Miami Children's Hospital. This was at about 6 months. He told us to basically " wait and see. " That as she starts being more mobile, the muscles in her back could cause her spine to straighten out. I was looking for a more proactive approach but my husband wasn't. He wanted to avoid anything if possible. I understood his logic and let it go. PLUS, everytime we mentioned she had scoliosis to someone, they recommended this guy. This guy is supposedly the BEST of the BEST in Florida. Someone (an adult Ortho) even said he was among the best two in the nation. So we took his word and waited and waited. We had appointments every 3-6 months. This past December (08) she turned 2. On her bday we took her for an appt. Her back had progressed from ~30something to late 60s in 6 months! So he > > (the ortho) then suggested casting. He didn't explain anything as to how the cast would be and I wasn't there (had a newborn 12/2 at home) so I didn't ask everything I wanted to. Anyway, they casted her 2/2/08 with her first cast. Her back was at 77 degrees then. Noone ever mentioned to me that her organs could be compromised or any consequence of her scoliosis. I was severely depressed to see her suffering so much after the first cast. She couldn't walk and was just miserable. But we took her to her weekly PT and they helped with her balance. I am severely disappointed in the information the doctors failed to give. So, she was in her first cast for 6 weeks. They knocked her out 3/18 and replaced it. Her back was at 34 degrees 2 weeks after the first cast. They removed the cast 4/28 and the ortho told us that 34 degrees was as good as it was going to get and that we would maintain it with a brace. He even had them expedite her brace and we had her > > Milwaukee brace by 5/1 (Friday). She hated hated hated the brace bc she knew it could come on and off. BUT we did get to put out the little pool and she had a blast. She had a super hard time learning how to walk again (without the cast) and seemed super uncomfortable in her own skin. Then we went to see the ortho again on the following Tuesday 5/5 and her back had gone from 34 to 66!!!!! In a week!!! So her third cast was put on 5/6 and she seems so much happier IN the cast then out of it. She does anything any other rambunctious toddler does, including touching her toes! A week later her back was back at 27 degrees in the cast. So here we are...3rd cast, 27 degrees, appt next tuesday again, still not thrilled but hoping to avoid surgery. The dr seems to think that regardless we will have back surgery when she is 8-10 yrs old. I am relying on the little bit of faith I've got left to hope she won't. > > > > I am super glad to have found this group. > > > > ~Angie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 If you click on any of the new posts, like this one, it should be in a box- double click where it says new photos- they are the latest ones posted. Hope I got this right... -Heidi Subject: Re: AngieTo: infantile_scoliosis Date: Tuesday, May 19, 2009, 6:11 PM I can't find it! > > > From: Hyatt <heather@... >> Subject: RE: [infantile_scoliosi s] Angie> To: infantile_scoliosis @yahoogroups. com> Date: Monday, May 18, 2009, 10:13 PM> > > > > > > > > > > Hi Angie,> Have you had a chance to read “Growth as a corrective force in the early treatment of progressive infantile scoliosis,†by Mehta? It can be found on the Resource Page of www.infantilescolio sis.org May I also recommend that you view “A New Direction,†DVD, which will help you to better understand the principles of this gentle, corrective method.> Do you know if your surgeon is applying EDF (elongation, derotation, flexion) casts on the correct equipment?> An edf cast that is properly applied should not cause suffering and depression. Does the cast look similar to the one in the article?> HRH> > > > > > From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of Take a guess?> Sent: Sunday, May 17, 2009 9:13 AM> To: infantile_scoliosis @yahoogroups. com> Subject: [infantile_scoliosi s] New to group-sorta> > > > > > > > > Hi all,> > I have been a "member" of this group for a little bit now - maybe a month or so. I have been in and out but haven't had a chance to post our story. So here goes:> > Isabel is currently 29 months (tomorrow ) We noticed her back was curving around 3 months. Her pedi hadn't noticed it. When we noticed it he referred us to a ped. ortho. at Miami Children's Hospital. This was at about 6 months. He told us to basically "wait and see." That as she starts being more mobile, the muscles in her back could cause her spine to straighten out. I was looking for a more proactive approach but my husband wasn't. He wanted to avoid anything if possible. I understood his logic and let it go. PLUS, everytime we mentioned she had scoliosis to someone, they recommended this guy. This guy is supposedly the BEST of the BEST in Florida. Someone (an adult Ortho) even said he was among the best two in the nation. So we took his word and waited and waited. We had appointments every 3-6 months. This past December (08) she turned 2. On her bday we took her for an appt. Her back had progressed from ~30something to late 60s in 6 months! So he> (the ortho) then suggested casting. He didn't explain anything as to how the cast would be and I wasn't there (had a newborn 12/2 at home) so I didn't ask everything I wanted to. Anyway, they casted her 2/2/08 with her first cast. Her back was at 77 degrees then. Noone ever mentioned to me that her organs could be compromised or any consequence of her scoliosis. I was severely depressed to see her suffering so much after the first cast. She couldn't walk and was just miserable. But we took her to her weekly PT and they helped with her balance. I am severely disappointed in the information the doctors failed to give. So, she was in her first cast for 6 weeks. They knocked her out 3/18 and replaced it. Her back was at 34 degrees 2 weeks after the first cast. They removed the cast 4/28 and the ortho told us that 34 degrees was as good as it was going to get and that we would maintain it with a brace. He even had them expedite her brace and we had her> Milwaukee brace by 5/1 (Friday). She hated hated hated the brace bc she knew it could come on and off. BUT we did get to put out the little pool and she had a blast. She had a super hard time learning how to walk again (without the cast) and seemed super uncomfortable in her own skin. Then we went to see the ortho again on the following Tuesday 5/5 and her back had gone from 34 to 66!!!!! In a week!!! So her third cast was put on 5/6 and she seems so much happier IN the cast then out of it. She does anything any other rambunctious toddler does, including touching her toes! A week later her back was back at 27 degrees in the cast. So here we are...3rd cast, 27 degrees, appt next tuesday again, still not thrilled but hoping to avoid surgery. The dr seems to think that regardless we will have back surgery when she is 8-10 yrs old. I am relying on the little bit of faith I've got left to hope she won't. > > I am super glad to have found this group.> > ~Angie> Quote Link to comment Share on other sites More sharing options...
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