Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Thanks a lot Shellie. I will try to find time to look for it in the web. I wonder if you know the specific website? the thing is NF occurs 1: 4000 so even here in our locality there is no doctor that specializes on it. the nearest is about 1 hour away from us and that is UCLA and Childrens Hospital in L.A. I already did some web - surfing about NF and has a bunch of articles. Shellie Grant wrote: Welcome Ethelyn! Just wanted to mention that I think Dr. Crawford at Cinncinati Children's has done alot of work with NF. You should be able to find some good articles on it. Shellie Grant ethelyn billones wrote: Hello everybody, I am Ethelyn I learned about this group while I was surfing the net for my daughters conditon. She is 3 1/2 y.o. and was diagnosed to have scoliosis. This was last Feb .27. Actually the scoliosis xray was done last Oct. 2007 and I was told that the angle is 32 degrees. It was an incidental finding when she had a chest x-ray; that means she has no other noticeable signs/symptoms. About two days ago though I already noticed that she is leaning to her left. The plan is for her to have a body cast which will be done under general anesthesia and this will be done on April 4. This really makes me worried considering that she is young and has to undergo this procedure. The orthopedic surgeon said adjustment will be done every 2-4 months. On May 5 MRI of the spine will also be done because she also has neurofibromatosis. This again will be done under IV sedation. I am wondering how did your babies " deal " with the cast on their body 24/7 or should I say how did you make your babies be able to take the ordeal. Are there anybody who had a good experience with braces? How's the growthof your children. Will it not be stunted by the cast. Is there anybody who's child has also neurofibromatosis. My daughter was only seen by one orthopedic surgeon and when I expressed a lot of concern for the procedure her casting was moved from March 18 toApril 4. For fear that further delay might worsen her case I did not decline the upcoming procedure. However, I have a schedule with another orthopedic surgeon on March 20. I am not sure what will the result be for this second consult with another doctor. Thanks lot everybody. I have read a lot of messages and all of your messages to everybody are very supportive and informative. Sincerely, Ethelyn --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Hi Deshea, I would love a brace shirt or two! I would be happy to pay for them and for the shipping. Let me know where to send you a check if the shirts aren't already spoken for. Thanks Jill Wienke --- " Deshea L. " wrote: > i've been meaning to do this for forever. finally > had a free weekend to go through my attic! > > i have 5 brace shirts that are probably extra > small. > i believe lucas wore them from 1 1/2 - 2 1/2 and > then for awhile when he was 4 1/2 (although it was > snug). i'm willing to mail them to anyone for no > cost. just want to give back to the group. > > deshea > > _______________________________________________________________________________ > mom to lucas (6 1/2 yrs old) and ruby (3 1/2 yrs old > and a handful!) > north of boston, ma > > lucas was diagnosed with infantile scoliosis at 18 > mos 68o/45o > spinal detethering due to a tight/fatty filum at 22 > mos > tlso and charleston brace from 18 mos to 2 1/2 yrs > old at children's boston, ma > serial plaster casting from 2 1/2 until 4 1/2 yrs > old at shriners in erie, pa > now in a spinecor brace at 21o/19o from montreal. > next appt. sept 2008 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 jill, no worries about the cost. could you e-mail me off-board with your address? i'll get them out tomorrow. 2? anyone else? i have 3 left . . . deshea > > > i've been meaning to do this for forever. finally > > had a free weekend to go through my attic! > > > > i have 5 brace shirts that are probably extra > > small. > > i believe lucas wore them from 1 1/2 - 2 1/2 and > > then for awhile when he was 4 1/2 (although it was > > snug). i'm willing to mail them to anyone for no > > cost. just want to give back to the group. > > > > deshea > > > > > _______________________________________________________________________________ > > mom to lucas (6 1/2 yrs old) and ruby (3 1/2 yrs old > > and a handful!) > > north of boston, ma > > > > lucas was diagnosed with infantile scoliosis at 18 > > mos 68o/45o > > spinal detethering due to a tight/fatty filum at 22 > > mos > > tlso and charleston brace from 18 mos to 2 1/2 yrs > > old at children's boston, ma > > serial plaster casting from 2 1/2 until 4 1/2 yrs > > old at shriners in erie, pa > > now in a spinecor brace at 21o/19o from montreal. > > next appt. sept 2008 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2008 Report Share Posted May 28, 2008 Thank you so much! I just emailed my address. I am hoping we will be in a brace in 4-6 months (maybe sooner?). I will update everyone on our status when we return from Rochester. We go June 4th. I am nervous and stressed already. Thanks again! Jill --- Deshea wrote: > jill, > > no worries about the cost. could you e-mail me > off-board with your > address? i'll get them out tomorrow. 2? > > anyone else? i have 3 left . . . > > deshea > > > > > > > i've been meaning to do this for forever. > finally > > > had a free weekend to go through my attic! > > > > > > i have 5 brace shirts that are probably extra > > > small. > > > i believe lucas wore them from 1 1/2 - 2 1/2 > and > > > then for awhile when he was 4 1/2 (although it > was > > > snug). i'm willing to mail them to anyone for > no > > > cost. just want to give back to the group. > > > > > > deshea > > > > > > > > > _______________________________________________________________________________ > > > mom to lucas (6 1/2 yrs old) and ruby (3 1/2 yrs > old > > > and a handful!) > > > north of boston, ma > > > > > > lucas was diagnosed with infantile scoliosis at > 18 > > > mos 68o/45o > > > spinal detethering due to a tight/fatty filum at > 22 > > > mos > > > tlso and charleston brace from 18 mos to 2 1/2 > yrs > > > old at children's boston, ma > > > serial plaster casting from 2 1/2 until 4 1/2 > yrs > > > old at shriners in erie, pa > > > now in a spinecor brace at 21o/19o from > montreal. > > > next appt. sept 2008 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Hi .. No, your not alone. I was so relieved after our first cast on 10/29.. But now we are approaching that next cast date.. 12/24.. I start to worry about the procedure again.. (more so anesthesia).. And then of course about keeping my son cold/illness free 2 weeks prior to the procedure or else he can not get the next cast.. But everyone on the site has been wonderful... It's very comforting to know that we are not alone. -------------- Original message -------------- I just read a couple posts about "emotional roller coasters" and "feeling blue" and had to reply. I read the posts constantly because there's great information, but for some reason it never occurred to me that you parents have some of the same crazy feelings I do. My craziness starts a couple days before we go to Chicago. I get myself all worked up about packing bags and making sure my other daughter is taken car of while I'm gone. It's not really that hard, but I make myself so stressed out. I think alot of it is seeing my daughter go through the casting, hoping for improvement, and worrying about what the doctor will say. Traveling with a two year old just really is hard! Well I think my craziness and stress is a combination of things, but I'm so glad to find out that I'm not the only one who gets emotional at casting time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 I can agree with you 100% we fly so its that added stress of traveling far. We go into that stress mode as casting approches every time. I have always had that rollercoaster ride and feeling blue before casting. I always have that feeling if we could have done things different we would not be in the situation we find ourselves in now. That feeling comes back everytime we have a cast change. I think thats why I feel " BLUE " always wishing it were over. But I love my little guy and my feelings are so less important than to see him so happy in everything he does. I really think the casting is so much harder on my Wife and me then it ever will be for him. AND YES IM STRESSED OUT! " LOL " but on with the journey. Darrell > > Hi .. > No, your not alone. I was so relieved after our first cast on 10/29.. But now we are approaching that next cast date.. 12/24.. I start to worry about the procedure again.. (more so anesthesia).. And then of course about keeping my son cold/illness free 2 weeks prior to the procedure or else he can not get the next cast.. > > But everyone on the site has been wonderful... It's very comforting to know that we are not alone. > -------------- Original message -------------- > > I just read a couple posts about " emotional roller coasters " and " feeling blue " and had to reply. I read the posts constantly because there's great information, but for some reason it never occurred to me that you parents have some of the same crazy feelings I do. My craziness starts a couple days before we go to Chicago. I get myself all worked up about packing bags and making sure my other daughter is taken car of while I'm gone. It's not really that hard, but I make myself so stressed out. I think alot of it is seeing my daughter go through the casting, hoping for improvement, and worrying about what the doctor will say. Traveling with a two year old just really is hard! Well I think my craziness and stress is a combination of things, but I'm so glad to find out that I'm not the only one who gets emotional at casting time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 , LOL I have dubbed it a "syndrome"! After casting, I'm so blue from the emotional roller-coaster and the let down of having Noelle cast-free for a day and then having to put her back in that little shell. The week before casting my husband knows I will snap like a twig if anyone gets in my way! I'm like a whirlwind trying to get everything organized and packed, etc..... Yes, we all go through it! You are definately not alone!!! LOL Steph Subject: (unknown)To: infantile_scoliosis Date: Monday, December 8, 2008, 12:18 AM I just read a couple posts about "emotional roller coasters" and "feeling blue" and had to reply. I read the posts constantly because there's great information, but for some reason it never occurred to me that you parents have some of the same crazy feelings I do. My craziness starts a couple days before we go to Chicago. I get myself all worked up about packing bags and making sure my other daughter is taken car of while I'm gone. It's not really that hard, but I make myself so stressed out. I think alot of it is seeing my daughter go through the casting, hoping for improvement, and worrying about what the doctor will say. Traveling with a two year old just really is hard! Well I think my craziness and stress is a combination of things, but I'm so glad to find out that I'm not the only one who gets emotional at casting time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 , LOL I have dubbed it a "syndrome"! After casting, I'm so blue from the emotional roller-coaster and the let down of having Noelle cast-free for a day and then having to put her back in that little shell. The week before casting my husband knows I will snap like a twig if anyone gets in my way! I'm like a whirlwind trying to get everything organized and packed, etc..... Yes, we all go through it! You are definately not alone!!! LOL Steph Subject: (unknown)To: infantile_scoliosis Date: Monday, December 8, 2008, 12:18 AM I just read a couple posts about "emotional roller coasters" and "feeling blue" and had to reply. I read the posts constantly because there's great information, but for some reason it never occurred to me that you parents have some of the same crazy feelings I do. My craziness starts a couple days before we go to Chicago. I get myself all worked up about packing bags and making sure my other daughter is taken car of while I'm gone. It's not really that hard, but I make myself so stressed out. I think alot of it is seeing my daughter go through the casting, hoping for improvement, and worrying about what the doctor will say. Traveling with a two year old just really is hard! Well I think my craziness and stress is a combination of things, but I'm so glad to find out that I'm not the only one who gets emotional at casting time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 I am crazy for the two weeks leading up to casting... worrying about the correction (or lack thereof), that I will forget something important, that will get sick and when we get there they will not cast him... it goes on and on. My poor children and hubby! The week after is even worse. I get the blues too and time, the positive words of support from everyone here, and my little guys tolerance of this whole thing bring me out of it! So glad to know this is "normal". Love you guys! Jill From: Dye <kellydyesbcglobal (DOT) net>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Monday, December 8, 2008, 12:18 AM I just read a couple posts about "emotional roller coasters" and "feeling blue" and had to reply. I read the posts constantly because there's great information, but for some reason it never occurred to me that you parents have some of the same crazy feelings I do. My craziness starts a couple days before we go to Chicago. I get myself all worked up about packing bags and making sure my other daughter is taken car of while I'm gone. It's not really that hard, but I make myself so stressed out. I think alot of it is seeing my daughter go through the casting, hoping for improvement, and worrying about what the doctor will say. Traveling with a two year old just really is hard! Well I think my craziness and stress is a combination of things, but I'm so glad to find out that I'm not the only one who gets emotional at casting time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 I am crazy for the two weeks leading up to casting... worrying about the correction (or lack thereof), that I will forget something important, that will get sick and when we get there they will not cast him... it goes on and on. My poor children and hubby! The week after is even worse. I get the blues too and time, the positive words of support from everyone here, and my little guys tolerance of this whole thing bring me out of it! So glad to know this is "normal". Love you guys! Jill From: Dye <kellydyesbcglobal (DOT) net>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Monday, December 8, 2008, 12:18 AM I just read a couple posts about "emotional roller coasters" and "feeling blue" and had to reply. I read the posts constantly because there's great information, but for some reason it never occurred to me that you parents have some of the same crazy feelings I do. My craziness starts a couple days before we go to Chicago. I get myself all worked up about packing bags and making sure my other daughter is taken car of while I'm gone. It's not really that hard, but I make myself so stressed out. I think alot of it is seeing my daughter go through the casting, hoping for improvement, and worrying about what the doctor will say. Traveling with a two year old just really is hard! Well I think my craziness and stress is a combination of things, but I'm so glad to find out that I'm not the only one who gets emotional at casting time. Quote Link to comment Share on other sites More sharing options...
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