Guest guest Posted April 24, 2012 Report Share Posted April 24, 2012 It's good to see how casting is helping your son even though you have extra speed bumps on the road. Thank you for taking the time and sharing.ErynMother of Brayden (2nd cast, down to 21* out of cast) From: Shauna <scolimail@...> infantile scoliosis treatment Sent: Monday, April 23, 2012 11:26 AM Subject: Kieran Cast 10 So we are back from cast 10 for my three year old son. And for several casts now he is always "about the same" except that he is not. He slowly gets worse. So that over several casts he is quite a bit worse. But here is the thing with my son -- he has SEVERE deformities. Not just the side to side curve,but also rotation and other thoracic problems. Of everything, his ribs are the worst. He was never on the cure list. He was only expected to slow progression for a better long term outcome. But as his mommy, I so badly wanted to undo what had happened to my beautiful little boy, the one who used to be straight. Next cast Kieran will be 4. All my hope of him avoiding surgery slipped almost away when he turned 3. Now 4 will be the next cast and five casts of "almost the same" = 12 degrees of progression. So that's that. But what my son has gotten, is his life saved by casting. The outcome will be so much better thanks to all of this. He would not be the beautiful, bright child that he is today if not for the casting. It has made a huge difference in his life. He was so very upset before he was cast and he really likes the casts because I think they make him more comfortable. As for his curve changing in his last cast -- I think it may had something to do with a couple of joints dislocating somewhere. When he had the five day cast break he had a rough time until there where a few pops suddenly that seemed to put everything back for him. I think it is just his condition, it has nothing to do whatsoever with the casting, which is great, in fact, incredible, and a huge help to him, a godsend even. Casting is giving my son so much, but not a cure. I once mentioned that I was going to try to find out how much the back grows through childhood. What I was mainly after was how much back growth will a single growth spurt give, how far apart are growth spurts and how many occur in each year, in ranges, on average. What I found instead, which I also wanted to know, but have come across a few times, is a couple of different studies that indicated how much growth in a year a child experiences. And this came out to around 2.5 to 3 cm, depending on the study in the infantile years, as in, before 3, and then by age 5 1.5cm (1 in one study, 2 as a high in another for some of the years) from age 5 to puberty, and then 2.5cm (one study said 2cm I think) per year during puberty and 1 cm after that and declining in the early 20s until all growth is achieved. I would cite my sources, but I have not gotten around with three kids and a full time job to being that meticulous, so I am just off the top of my head regurgitating what stuck in my mind, which was the information that I felt I needed to provide better informed consent to things involving my son. I am still looking for how many growth spurts/how much growth in a spurt and how much growth between spurts and what mainly grows in these circumstances for each year until age 25. WHY? Well, when a doctor says we should do something I really want to know the nature of growth for the average child and what we could expect Kieran to do so that I have proper informed consent to anything done. Also, it helps me make decisions as to when to do what kind of procedure when given a choice. And I might even give me ideas that I can suggest for his treatment or even try at home, such as exercise etc. I am still looking for this info, and will post my source for growth per year if I come across it again and do not have three monkeys climbing on me, as I can't start that kind of a thing the. But there I go, Kieran has odd skinny bones, severe deformities, and will need lots, and lots of surgery. Just not now. I am so very thankful for the casts right now and am not looking forward to the next time I do desperately hope that maybe, just maybe, my son could be corrected enough to avoid surgery. Bracing will be in Kieran's future, I don't know when. More casting hopefully after that. For me this is a terrible nightmare, but I just hope that my son in the end ends up being happy and reasonably pain free. Because he did not start that way when this first set in. But I guess I could go on forever, it just is what it is, and hopefully he will always after now have peace with it. And a long, healthy life. Shauna Leamy mother of Kieran, Kelsey, and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2012 Report Share Posted May 4, 2012 My heart goes out to you Shauna. I can relate so much to the feelings you are having. Mehta casting improved much of the way my Liv could live, but was never a cure for her. It was a long road of multiple, conservative approaches to treatment that helped her over time. I thought we'de never catch a break! But, we did. Its been over 2 yrs since we've been to SLC....And, we are living fairly normal now...That day will also come for you and your darling. Have a great wknd:) HRH > So we are back from cast 10 for my three year old son. And for several > casts now he is always " about the same " except that he is not. He slowly > gets worse. So that over several casts he is quite a bit worse. > > > But here is the thing with my son -- he has SEVERE deformities. Not just > the side to side curve,but also rotation and other thoracic problems. Of > everything, his ribs are the worst. > > > He was never on the cure list. He was only expected to slow progression > for a better long term outcome. > > But as his mommy, I so badly wanted to undo what had happened to my > beautiful little boy, the one who used to be straight. > > Next cast Kieran will be 4. All my hope of him avoiding surgery slipped > almost away when he turned 3. Now 4 will be the next cast and five casts > of " almost the same " = 12 degrees of progression. So that's that. > > But what my son has gotten, is his life saved by casting. The outcome > will be so much better thanks to all of this. He would not be the > beautiful, bright child that he is today if not for the casting. It has > made a huge difference in his life. He was so very upset before he was > cast and he really likes the casts because I think they make him more > comfortable. > > As for his curve changing in his last cast -- I think it may had something > to do with a couple of joints dislocating somewhere. When he had the five > day cast break he had a rough time until there where a few pops suddenly > that seemed to put everything back for him. I think it is just his > condition, it has nothing to do whatsoever with the casting, which is > great, in fact, incredible, and a huge help to him, a godsend even. > Casting is giving my son so much, but not a cure. > > I once mentioned that I was going to try to find out how much the back > grows through childhood. What I was mainly after was how much back growth > will a single growth spurt give, how far apart are growth spurts and how > many occur in each year, in ranges, on average. > > What I found instead, which I also wanted to know, but have come across a > few times, is a couple of different studies that indicated how much growth > in a year a child experiences. And this came out to around 2.5 to 3 cm, > depending on the study in the infantile years, as in, before 3, and then > by age 5 1.5cm (1 in one study, 2 as a high in another for some of the > years) from age 5 to puberty, and then 2.5cm (one study said 2cm I think) > per year during puberty and 1 cm after that and declining in the early 20s > until all growth is achieved. I would cite my sources, but I have not > gotten around with three kids and a full time job to being that > meticulous, so I am just off the top of my head regurgitating what stuck > in my mind, which was the information that I felt I needed to provide > better informed consent to things involving my son. > > I am still looking for how many growth spurts/how much growth in a spurt > and how much growth between spurts and what mainly grows in these > circumstances for each year until age 25. WHY? Well, when a doctor says > we should do something I really want to know the nature of growth for the > average child and what we could expect Kieran to do so that I have proper > informed consent to anything done. Also, it helps me make decisions as to > when to do what kind of procedure when given a choice. And I might even > give me ideas that I can suggest for his treatment or even try at home, > such as exercise etc. I am still looking for this info, and will post my > source for growth per year if I come across it again and do not have three > monkeys climbing on me, as I can't start that kind of a thing the. > > But there I go, Kieran has odd skinny bones, severe deformities, and will > need lots, and lots of surgery. Just not now. I am so very thankful for > the casts right now and am not looking forward to the next time I do > desperately hope that maybe, just maybe, my son could be corrected enough > to avoid surgery. Bracing will be in Kieran's future, I don't know when. > More casting hopefully after that. For me this is a terrible nightmare, > but I just hope that my son in the end ends up being happy and reasonably > pain free. Because he did not start that way when this first set in. But > I guess I could go on forever, it just is what it is, and hopefully he > will always after now have peace with it. And a long, healthy life. > > Shauna Leamy > mother of Kieran, Kelsey, and > > Quote Link to comment Share on other sites More sharing options...
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