Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 I just re-read Devyn's story and that is truly amazing! With his Chiari Malformation and surgery, the fact that casting got you to zero is an incredible story! I can only imagine how you you must be...what a battle you have won! I'm sure you will do a lot of celebrating this weekend. I can only hope & pray that my son (now 21 months, in 2nd cast at 55 degrees) is doing that well at 2-1/2 years old. - P.S. Devyn is so adorable! > > Hello Everyone > Devyn had a follow up xray appt today. It has been a year since > we started casting and this is now his second brace. He is at 0degrees, > yep he is fully corrected! We are having a new brace made just to make > sure he stays this way and we will monitor every two to three months > now. He is growing so fast that he gets a new brace about every three > months or so. If anyone would like to read devyn's story it is on the > ISOP website under stories. Hope everyone else is doing well and that > this will give you all hope that full correction is possibly and that > casting is so worth it. > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Thanks for the congrats we are very happy and thank every day for and the doctors that are open minded to learn the early treatment techniques. I know for a lot of parents it seems hard and long but it is just so worth it to cast and not watch and wait. Had we not gone with casting Devyn would be facing surgery for rods, and that in itself is just a great feeling knowing we have changed his life. I plan on sticking around to encourage those that are new to all this. Keep your head up, will get to this point too and some day soon you to will be able to share how great this has all been. Keep us posted and keep the hope. Rochelle > > > > Hello Everyone > > Devyn had a follow up xray appt today. It has been a year since > > we started casting and this is now his second brace. He is at 0degrees, > > yep he is fully corrected! We are having a new brace made just to make > > sure he stays this way and we will monitor every two to three months > > now. He is growing so fast that he gets a new brace about every three > > months or so. If anyone would like to read devyn's story it is on the > > ISOP website under stories. Hope everyone else is doing well and that > > this will give you all hope that full correction is possibly and that > > casting is so worth it. > > > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Thank you Rochelle, for the encouragement and for sticking around. > > > > > > Hello Everyone > > > Devyn had a follow up xray appt today. It has been a year > since > > > we started casting and this is now his second brace. He is at > 0degrees, > > > yep he is fully corrected! We are having a new brace made just to > make > > > sure he stays this way and we will monitor every two to three > months > > > now. He is growing so fast that he gets a new brace about every > three > > > months or so. If anyone would like to read devyn's story it is on > the > > > ISOP website under stories. Hope everyone else is doing well and > that > > > this will give you all hope that full correction is possibly and > that > > > casting is so worth it. > > > > > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 OMG......Rochelle I am SO happy for Devyn and your family!!!That is wonderful! 0!! You have got to be on cloud nine. What a great success story of early treatment. That boy does grow fast. I can't believe he will get another brace. So how long has he been in a brace/braces?Congrats again!!Take care,TashaRochelle West /Devyn West wrote: Hello Everyone Devyn had a follow up xray appt today. It has been a year since we started casting and this is now his second brace. He is at 0degrees, yep he is fully corrected! We are having a new brace made just to make sure he stays this way and we will monitor every two to three months now. He is growing so fast that he gets a new brace about every three months or so. If anyone would like to read devyn's story it is on the ISOP website under stories. Hope everyone else is doing well and that this will give you all hope that full correction is possibly and that casting is so worth it. Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Tasha He got his first cast the end of October and the second in February. So in all about six months. They want him to wear the brace for a little longer just to make sure he stays at 0. This brace would be okay except for it is a little tight around the chest and it hurts his legs if he sits to long because it digs into his hips. They said they could try and mold it a little but that it would just be better to mold a new one. Thank goodness my husbands insurance will cover another one this year. Rochelle Hello Everyone > Devyn had a follow up xray appt today. It has been a year since > we started casting and this is now his second brace. He is at 0degrees, > yep he is fully corrected! We are having a new brace made just to make > sure he stays this way and we will monitor every two to three months > now. He is growing so fast that he gets a new brace about every three > months or so. If anyone would like to read devyn's story it is on the > ISOP website under stories. Hope everyone else is doing well and that > this will give you all hope that full correction is possibly and that > casting is so worth it. > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Rochelle, 0 degrees! That is amazing! I hope for that every day (as I'm sure we all do!) Congrats and keep us posted on his experiences in brace, too. StephRochelle West /Devyn West wrote: Hello EveryoneDevyn had a follow up xray appt today. It has been a year since we started casting and this is now his second brace. He is at 0degrees, yep he is fully corrected! We are having a new brace made just to make sure he stays this way and we will monitor every two to three months now. He is growing so fast that he gets a new brace about every three months or so. If anyone would like to read devyn's story it is on the ISOP website under stories. Hope everyone else is doing well and that this will give you all hope that full correction is possibly and that casting is so worth it.Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Dear Rochelle, I have a question for you. Was (past tense ) Devyn's scoliosis considered congenital? Since the cause was known, it was not considered 'idiopathic', but secondary to the Chiari and/or the surgery, right? I'm just wondering b/c it seems that casting may work the best for idiopathic scoliosis, and I often hear that it doesn't work as well for congenital...but I wonder what category my son fits into, since his is secondary to neuroblastoma/surgery(thoracotomy). All the doctors think that we may be prolonging surgery with casting but that it won't be curative. We are hoping and believing that will not need that surgery! Thanks > > > > > > > > Hello Everyone > > > > Devyn had a follow up xray appt today. It has been a year > > since > > > > we started casting and this is now his second brace. He is at > > 0degrees, > > > > yep he is fully corrected! We are having a new brace made just to > > make > > > > sure he stays this way and we will monitor every two to three > > months > > > > now. He is growing so fast that he gets a new brace about every > > three > > > > months or so. If anyone would like to read devyn's story it is on > > the > > > > ISOP website under stories. Hope everyone else is doing well and > > that > > > > this will give you all hope that full correction is possibly and > > that > > > > casting is so worth it. > > > > > > > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 That is great news!!! How long do they anticipate him wearing his brace? Our Ortho, Dr Kishan, said that if Landon's follow up MRI shows the Chiari is gone, Landon will no longer need to wear his brace. He will prob go in for the MRI in the Fall. He will be about 7 or 8 months in a brace and post decompression surgery at that point. We go in the end of the month to get an x-ray to make sure he is holding at zero. Tammy Mommy to Landon, 20 months~ 25 degree curve w/ an RVAD of 24~ 12 degrees in 1st cast with an RVAD of 2 (8/28/07)~ ZERO in 2nd cast (11/20/07)~ decompression surgery for Chiari Malformation done at UCLA on 2/1/08~ currently holding at Zero in his brace... AMEN !!! Update on Devyn Hello EveryoneDevyn had a follow up xray appt today. It has been a year since we started casting and this is now his second brace. He is at 0degrees, yep he is fully corrected! We are having a new brace made just to make sure he stays this way and we will monitor every two to three months now. He is growing so fast that he gets a new brace about every three months or so. If anyone would like to read devyn's story it is on the ISOP website under stories. Hope everyone else is doing well and that this will give you all hope that full correction is possibly and that casting is so worth it.Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Wow!!!so happy for you Rochelle. much more for Devyn. thanks for keeping our hopes high. EthelynRochelle West /Devyn West wrote: Hello EveryoneDevyn had a follow up xray appt today. It has been a year since we started casting and this is now his second brace. He is at 0degrees, yep he is fully corrected! We are having a new brace made just to make sure he stays this way and we will monitor every two to three months now. He is growing so fast that he gets a new brace about every three months or so. If anyone would like to read devyn's story it is on the ISOP website under stories. Hope everyone else is doing well and that this will give you all hope that full correction is possibly and that casting is so worth it.Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Tammy They have said probly through the summer and as long as his curves stay at 0 they will let him take it off. How is Landon doing? I often think about you guys. Devyn had his MRI in February and everything looks great so far. He will go in next year for his yearly unless he starts having symptoms. Rochelle > > That is great news!!! How long do they anticipate him wearing his brace? Our Ortho, Dr Kishan, said that if Landon's follow up MRI shows the Chiari is gone, Landon will no longer need to wear his brace. He will prob go in for the MRI in the Fall. He will be about 7 or 8 months in a brace and post decompression surgery at that point. We go in the end of the month to get an x-ray to make sure he is holding at zero. > > > Tammy > > Mommy to Landon, 20 months > ~ 25 degree curve w/ an RVAD of 24 > ~ 12 degrees in 1st cast with an RVAD of 2 (8/28/07) > ~ ZERO in 2nd cast (11/20/07) > ~ decompression surgery for Chiari Malformation done at UCLA on 2/1/08 > ~ currently holding at Zero in his brace... AMEN !!! > > > Update on Devyn > > > Hello Everyone > Devyn had a follow up xray appt today. It has been a year since > we started casting and this is now his second brace. He is at 0degrees, > yep he is fully corrected! We are having a new brace made just to make > sure he stays this way and we will monitor every two to three months > now. He is growing so fast that he gets a new brace about every three > months or so. If anyone would like to read devyn's story it is on the > ISOP website under stories. Hope everyone else is doing well and that > this will give you all hope that full correction is possibly and that > casting is so worth it. > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2008 Report Share Posted May 16, 2008 Oops! Sorry, about that, Rochelle! There are so many wonderful updates, I forgot to congratulate you on Devyns progress!! I just got off the phone with and I should hear something by next week. I’ll call you as soon as I get the good news. Thanks for all of your hard work. ISOP couldn’t continue without dedicated parents/grandparents like you and your mum! Have a fabulous weekend! HRH Re: Update on Devyn Tammy They have said probly through the summer and as long as his curves stay at 0 they will let him take it off. How is Landon doing? I often think about you guys. Devyn had his MRI in February and everything looks great so far. He will go in next year for his yearly unless he starts having symptoms. Rochelle > > That is great news!!! How long do they anticipate him wearing his brace? Our Ortho, Dr Kishan, said that if Landon's follow up MRI shows the Chiari is gone, Landon will no longer need to wear his brace. He will prob go in for the MRI in the Fall. He will be about 7 or 8 months in a brace and post decompression surgery at that point. We go in the end of the month to get an x-ray to make sure he is holding at zero. > > > Tammy > > Mommy to Landon, 20 months > ~ 25 degree curve w/ an RVAD of 24 > ~ 12 degrees in 1st cast with an RVAD of 2 (8/28/07) > ~ ZERO in 2nd cast (11/20/07) > ~ decompression surgery for Chiari Malformation done at UCLA on 2/1/08 > ~ currently holding at Zero in his brace... AMEN !!! > > > Update on Devyn > > > Hello Everyone > Devyn had a follow up xray appt today. It has been a year since > we started casting and this is now his second brace. He is at 0degrees, > yep he is fully corrected! We are having a new brace made just to make > sure he stays this way and we will monitor every two to three months > now. He is growing so fast that he gets a new brace about every three > months or so. If anyone would like to read devyn's story it is on the > ISOP website under stories. Hope everyone else is doing well and that > this will give you all hope that full correction is possibly and that > casting is so worth it. > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Hi Rochelle, Did he only have 2 casts? That's great! Could you tell me what degree his curve was at when you started? Do you know (or anyone in this group know) what determines when casting is stopped? 2 casts is great but I notice that some kids have several more. My daughter is scheduled for her 3rd cast on May 28th. She is currently in her 2nd holding at 0 degrees. Thanks. Rita Hello Everyone > > Devyn had a follow up xray appt today. It has been a year > since > > we started casting and this is now his second brace. He is at > 0degrees, > > yep he is fully corrected! We are having a new brace made just to > make > > sure he stays this way and we will monitor every two to three > months > > now. He is growing so fast that he gets a new brace about every > three > > months or so. If anyone would like to read devyn's story it is on > the > > ISOP website under stories. Hope everyone else is doing well and > that > > this will give you all hope that full correction is possibly and > that > > casting is so worth it. > > > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Rita Devyn had 3 casts and they were changed every two months. You can read more about his story on the ISOP website. He was at 10 degrees the last two xrays in casts with no change so they decided to go to a brace because he wasn't getting anymore correction with the casts. It really depends on the doctor but Miss Mehta's technique says that once they are under 10 and can gain no more correction then it is time for a brace. Then they usually should wear a brace for 6months to a year. Devyn's curve was over 40degrees when we started a year ago.We donothave the exact number because they did not want expose him to more radiation. Depending on how rigid or how flexible the spine is and if there are any other problems like low muscletone or connective tissue disorders depends on how well and fast the spine is corrected. i hope I have helped answer your questions. Rochelle mom to Devyn 2 and 1/2yrs Infantile Scoliosis, Chiari 1 Hello Everyone > > > Devyn had a follow up xray appt today. It has been a year > > since > > > we started casting and this is now his second brace. He is at > > 0degrees, > > > yep he is fully corrected! We are having a new brace made just > to > > make > > > sure he stays this way and we will monitor every two to three > > months > > > now. He is growing so fast that he gets a new brace about every > > three > > > months or so. If anyone would like to read devyn's story it is > on > > the > > > ISOP website under stories. Hope everyone else is doing well and > > that > > > this will give you all hope that full correction is possibly and > > that > > > casting is so worth it. > > > > > > Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Awesome news!! I am so happy for Devyn. You must be thrilled. Noelle (12-2-01) Ian (8-15-04) Update on Devyn Hello EveryoneDevyn had a follow up xray appt today. It has been a year since we started casting and this is now his second brace. He is at 0degrees, yep he is fully corrected! We are having a new brace made just to make sure he stays this way and we will monitor every two to three months now. He is growing so fast that he gets a new brace about every three months or so. If anyone would like to read devyn's story it is on the ISOP website under stories. Hope everyone else is doing well and that this will give you all hope that full correction is possibly and that casting is so worth it.Rochelle mom to Devyn 2 and 1/2yrs, Infantile Scoliosis, Chiari 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 They have each time put him on a regular casting table and used plaster that sets really fast then they do an xray to make sure the mold is good then they cut it off and that is what they use to make the brace. The material they used on the first two braces was called Orthoplast and it worked really well. The material they used the third time was a different type of hard plastic and just did not conform to his body. Not to mention it took them a month to make the third brace and that is why he progressed back to 9degrees. We decided with what has happened to leave him out of brace and xray every four weeks to see what his spine will do without the brace support. Hope this answers your question and I will update this evening when we get home what his xray reveals. Rochelle > > Rochelle: > > I am just curious as to how they are making Devyn's brace? Do they do a quick cast to use? > > E > ________________________________ > From: infantile_scoliosis [infantile_scoliosis ] On Behalf Of Rochelle West /Devyn West [coolesttwinkie@...] > Sent: Wednesday, August 06, 2008 6:05 PM > To: infantile_scoliosis > Subject: Update on Devyn > > > Hey everyone, > We have been so busy I haven't had a chance to give an update on > Devyn's brace situation. Just in case you don't remember, Devyn's third > brace was made incorrectly and we had to wait a month to get it because > of mis-communication. In that time he went from 0degrees to 9degrees. > We were hoping to get the new brace to hold him at 0degrees and make > sure he stayed there but that didn't happen. He went brace free for > another three weeks after we found out the new brace was not made > correctly and we had an xray on July 3rd. At that time he was still > holding at 9degrees or so. The Doc asked if we wanted to go another > four weeks and see what happens so that is what we have done. Devyn has > an appointment tomorrow afternoon to see if he is still holding at > 9degrees with no brace. If he has even progressed a little over > 10degrees we will have a new brace made asap to hopefully correct > without having to go back in a cast. I will let everyone know what the > xray shows tomorrow evening. > > Rochelle mom to Devyn 2 and 3/4yrs Infantile Scoliosis, Chiari 1 > Quote Link to comment Share on other sites More sharing options...
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