Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 Nola, I have read my post over and over to see how I might have unintentionally "cut you down to further my cause", and I cant see it. I have stated facts only. Its my job as the Dir of ISOP and the owner of this list to clarify such things. The example that Crista gave on why I must do this, was correct. There ARE new parents on CAST everyday, that are seeking out alternatives to ineffective bracing and surgery. There IS a time frame in a babes life when POP jackets work best.... If the parents have their child in an ineffective tlso brace, and they read your correction post, they might just keep their child in a brace.....When they could actually be getting their babe corrected in a cast (for life). If I was to let your post about correction go without clarification, there would be many parents who would probably be in agreement with their docs choice of bracing only because they knew no different, and were under the impression that braces work just as good as casts, (so why bother w/ casting.? would be their next thought) You are right about my anti bracing attitude for babies....Now, that I have knowledge on what early treatment w/ POP jackets can do for infants/ young children, in comparison to what bracing can do for infants/young children, I am 100% pro casting. Braces have been proven to be of no significant benefit to infants afflicted with progressive infantile scoliosis, and my daughter and many other children are testimony to that. I have discussed this w/ many, many ortho's here and elswhere. These braces can maintain for a while, but thats about it...then surgical intervention. Parents on this list, and everywhere should know this, and I will continue to educate/arm families w/ this info, so they can make educated choices for their child. I am truly sorry that you felt that I insulted you. That was never my intention. My intention is to educate families seeking alternatives to premature surgical intervention for progressive non structural scoliosis, about the benefits of early treatment w POP jackets. That is why I started the group CAST, and ISOP. Our mission: To improve the standard of knowledge, means of prevention, treatment and diagnosis of infantile scoliosis. Once again, sorry that you took that as an insult. It was truly NOT meant to stress you.. Bottom line, I must clarify statements/things said on this group, or there will be more babies falling through the cracks, when they could be recieving the help/support they deserve. I hope you will reconsider your decision on dropping yourself from this group. Sincerely, HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 Nola, Please take up on her offer for the free video, you will then know what we are all talking about!! Some of the families are on there and they tell their stories. It could do nothing but possibly help your little girl. You don't have to sign up for a cast just open your mind to the possibility. You need to be your childs advocate, My pediatrician told me this. You can not put 100% faith in your Dr. they are human and make mistakes YOU need to be educated on whats out there. So....if you want to educate yourself take up on this once and for all. I would love to see your little girl Scoliosis free instead of living in a brace with surgery looming some day. We are Mom's going through the SAME thing you are. We want whats best for our babies, all of the babies, and we hope to change the way Infantile Scoliosis is treated! Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 Nola, We have our cast change next week and will be out of a cast for 2 days. I am having Dr. D'Astous do an x-ray out of the cast before our cast is applied so I will let you know what his true curve is. Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Nola, You are missing the POINT!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 But the question is, what is the curve's measurement going to be when the cast is off? You don't know. When my daughter's brace is on, it's almost straight. The 25ยบ measurement is with the brace off. I didn't know about casts until earlier this year, and having had horrible experinces with casts when my daughter was an infant (for another medical issue) I'm not crazy about them. I believe I joined this list right around the time she turned five, and NO ONE here encouraged us to try casts then. NO ONE. It wasn't until this e- mail from you, Jen, that you chose to say something. Dr. Lubicky is a respected doctor, one who HAS used casts, and I am confident that if he thought it was the best thing for her, we would have one. Where are the people for whom casts have cured the scoliosis? Show me. I've done a lot of research online about infantile scoliosis and have never come across this. And while this list is supposed to promote CAST (and note I have NEVER said anything bad about it) it is the ONLY active list I can find that primarily has infantile idiopathic cases. Nola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 On 3 Aug 2004 at 21:06, cristab@... wrote: > I would love to see your little girl > Scoliosis free instead of living in a brace with surgery looming some day. Fusion surgery is not looming ahead for us. It is not a given in our case. We might *choose* the vertebral body stapling surgery (*gasp* someone would choose a surgery....yes; I've read a lot about it and spoke with the doc and with someone who has been though it), but fusion surgery is not likely if a brace has kept her curve from progressing for this long. Nola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Then what is the point? On 3 Aug 2004 at 23:07, cristab@... wrote: > > > > Nola, > You are missing the POINT!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Nola, I would look into the bending brace at night, and check into Rolfing/Structural Integration. Just to be on the safe side. Then who knows? You may be done! (I can send you pics/info on both, if you like) Sincerely, HRH Quote Link to comment Share on other sites More sharing options...
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