Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Jerry, I've been anxious for your update. I am SO glad that all went well. What fantastic results! And, how wonderful that she could be in the cast for less time than originally thought. One thing I have noticed in regards to diapering, after a week or two the cast tends to loosen up and it will be easier to tuck the diaper up the front and back of the cast. You will probably even be able to get down to one diaper. That is awesome about Dr.Emans going to Erie! It would be wonderful if he started doing the casting too. I am surprised, but this is just fantastic news. Noelle (12-2-01)Ian (8-15-04) Marissa's First Cast Hope all is well with everyone. We returned back from Erie this week with Marissa's first cast. Other than the flight cancellations, the trip went very well. As you all coached me, the team at Shriner's did a fantastic job with everything. Marissa actually continued her improvement while in a brace as her out of brace curve fell to 40 from 46 three weeks ago. We actually left her out of the brace the day before so she could travel brace free. Also, her top curve is cured. Dr. said the there is no rotation at all and everything looks much better than it was even three weeks ago just by looking at her back. This was great news as I always hold out hope that it may resolve. That's my one fear, that I'm overtreating my little girl. However, I know, this is a lesser evil than not going after correction. Her casting started at 7 and took less than an hour. She was very good with the anesthesia as she woke up even before we got there. Dr. showed us the after cast x-ray and we were very pleased. Her curve is now down to 19. He was very happy with the results. The one downer of the whole trip is that he really wouldn't suggest a timetable or prognosis on the future as he says it's very variable by child. He does think however that it'll be less than previously thought due to her very accommodating flexible spine and significant growth potential in the cast. His previous thoughts were two years. The actual worst part for Marissa was the trimming. We needed to go back downstairs twice for trimming to fine tune the areas needed and boy did she not like this. Good thing Sue went quick. She did a great job trimming quickly. By 1 PM, Marissa was pretty much her normal self with the exception that she's still adjusting to the cast versus the brace. The cast front upper part is definitely new to her as the brace only went up to mid chest. She also over the past day or so is starting to learn that she needs to change things up a bit to do what she wants in regards to climbing etc. I do think the brace was easier for her to move, but it's early on yet and only time will tell. Diapering as you all know is altogether a challenge. So far, it's fold, tuck under, tape to shirt, pull-ups over it and pray. Two days --- no issues -- knock on wood. I've noticed that the tape we have here at home works very well in holding the diaper in place in case it comes untucked. It's a tenderskin tape that can go on skin. We tape up the front and back sides to the shirt. The hospital uses 3M Microporous, it's the same thing. Well, we'll see how it goes and my wife and I are very grateful for everyone's help on this board. News is travelling as Dr. told me Dr. Emans is going to Erie to see this procedure and learn more about it. Bottom line is I'm sure the Harvard educated docs don't like the fact that folks are passing up their care for something else that apparantly is having some success. Just look at x-rays and that tells you the story. This is good news as hopefully someday, it'll be treated in more hospitals and regions. Jerry Marissa's Dad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Jerry, Thanks for the update on Marissa and the success of her 1st cast! 40 to 19 is significant correction, and with the growing she has ahead of her, more success will follow. Fabulous! About Emans...Wow! This is the best news ever! I have been waiting for this news for a couple of years.....Deshea, , !! Did you read that!!! Awsome news! Thanks for sharing that tid-bit of info with us, Jerry. Finally, early treatment is catching on. Thanks to Miss Mehta, these wonderful Shriners docs, and dedicated parents!! Fantastic! HRH > Hope all is well with everyone. We returned back from Erie this week with > Marissa's first cast. Other than the flight cancellations, the trip went > very well. As you all coached me, the team at Shriner's did a fantastic > job with everything. Marissa actually continued her improvement while in > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > actually left her out of the brace the day before so she could travel > brace free. Also, her top curve is cured. Dr. said the there is > no rotation at all and everything looks much better than it was even three > weeks ago just by looking at her back. This was great news as I always > hold out hope that it may resolve. That's my one fear, that I'm > overtreating my little girl. However, I know, this is a lesser evil than > not going after correction. > > Her casting started at 7 and took less than an hour. She was very good > with the anesthesia as she woke up even before we got there. Dr. > showed us the after cast x-ray and we were very pleased. Her curve is now > down to 19. He was very happy with the results. The one downer of the > whole trip is that he really wouldn't suggest a timetable or prognosis on > the future as he says it's very variable by child. He does think however > that it'll be less than previously thought due to her very accommodating > flexible spine and significant growth potential in the cast. His previous > thoughts were two years. > > The actual worst part for Marissa was the trimming. We needed to go back > downstairs twice for trimming to fine tune the areas needed and boy did > she not like this. Good thing Sue went quick. She did a great job > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > the exception that she's still adjusting to the cast versus the brace. > The cast front upper part is definitely new to her as the brace only went > up to mid chest. She also over the past day or so is starting to learn > that she needs to change things up a bit to do what she wants in regards > to climbing etc. I do think the brace was easier for her to move, but > it's early on yet and only time will tell. Diapering as you all know is > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > noticed that the tape we have here at home works very well in holding the > diaper in place in case it comes untucked. It's a tenderskin tape that > can go on skin. We tape up the front and back sides to the shirt. The > hospital uses 3M Microporous, it's the same thing. > > Well, we'll see how it goes and my wife and I are very grateful for > everyone's help on this board. News is travelling as Dr. told me > Dr. Emans is going to Erie to see this procedure and learn more about it. > Bottom line is I'm sure the Harvard educated docs don't like the fact that > folks are passing up their care for something else that apparantly is > having some success. Just look at x-rays and that tells you the story. > This is good news as hopefully someday, it'll be treated in more hospitals > and regions. > > Jerry > Marissa's Dad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 heather, i missed this post! thanks for pointing it out! jerry, wow! great news all around both with marisa's #s and dr. emans going to erie. i almost can't believe it! lucas and i go to erie in about a week (feb. 13-14) so i'll ask dr. sanders about that. call me if you want to catch up! deshea (sorry for all the exclamation points. can you tell i'm excited?) > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 I am so afraid to send a message with all this virus stuff going on. This is my first attempt since thursday. Jerry, Good news and great correction! Trimming and pedaling is the worst. Jake did a little better the second time around. Hope Marissa does, too. It sure adds to the anxiety that day, doesn't it? She'll be back to her old self as far as getting around very quickly if she hasn't already done so!! Way to go, Marissa :-) Fantastic news about Emans. As you know we've been to Children's as well. When we mentioned again to our ortho (last Nov) about casting, he dismissed the notion completely. Hopefully they are coming around! Good news indeed that early treatment is catching on!!!! Smiles, mom to and Jake > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Jenn, Marissa is now back to her old self, very playful little one. She is so happy in her environment that you can see a difference when she's away for a couple of days. She's doing OK balance wise except now she's a little top-heavy. She is so intent on keeping up with her brother that she is sometimes very daring with running and climbing that she falls. Diapering is let's say a challenge. We've gone through at least four different methods. The latest is taking a smaller diaper(number 2) and stuffing it under. We also have a pad in the the diaper to absorb stuff as fast as possible for little leakage. We then use tenderskin tape to tape the diaper to the pulled up shirt, thus the diaper cannot fall down. We then put a pull up over it to ensure it stays. So far, so good, however changing is a challenge. She cannot stand changing. As far as Emans, I think that he's coming around due to the numbers of cases and the results. Let's face it for many of us, you just need to put the x-rays side by side to see that improvement. Now does it mean no surgery, hopefully, but we don't know yet. That's going to be his arguement. It's also a smart move on his part to be involved in the improvement of care for these little ones. Let's face it, his identity is great and he wants to keep that up. When I went to Children's a couple of months ago, Karlin told me that the number of cases in infantiles was growing versus years of the past. This may also have something to do with it. They want to have the best options at their disposal to help. Take care, talk to you soon. Jerry Marissa's Dad Re: Marissa's First Cast I am so afraid to send a message with all this virus stuff going on. This is my first attempt since thursday. Jerry, Good news and great correction! Trimming and pedaling is the worst. Jake did a little better the second time around. Hope Marissa does, too. It sure adds to the anxiety that day, doesn't it? She'll be back to her old self as far as getting around very quickly if she hasn't already done so!! Way to go, Marissa :-) Fantastic news about Emans. As you know we've been to Children's as well. When we mentioned again to our ortho (last Nov) about casting, he dismissed the notion completely. Hopefully they are coming around! Good news indeed that early treatment is catching on!!!! Smiles, mom to and Jake > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Hi Jerry, That is so amazing that Dr Emans is keen to look at this treatment. The Aus docs won't eve nlook at us now despite the xrays and improvement. They are so much more arrogant than American docs. It is such a shame as although our population and therefore the incidence of infantile scoliosis is low there are still a couple of us here and unfortunately we have to leave the country to get this treatment. I have other friends who take their little boy to the UK. I hope the docs in SLC and Erie publish their results. Good luck with Marissa, great progress Love Bert Jerry Lamarre <gerard_lamarre@...> wrote: Jenn, Marissa is now back to her old self, very playful little one. She is so happy in her environment that you can see a difference when she's away for a couple of days. She's doing OK balance wise except now she's a little top-heavy. She is so intent on keeping up with her brother that she is sometimes very daring with running and climbing that she falls. Diapering is let's say a challenge. We've gone through at least four different methods. The latest is taking a smaller diaper(number 2) and stuffing it under. We also have a pad in the the diaper to absorb stuff as fast as possible for little leakage. We then use tenderskin tape to tape the diaper to the pulled up shirt, thus the diaper cannot fall down. We then put a pull up over it to ensure it stays. So far, so good, however changing is a challenge. She cannot stand changing. As far as Emans, I think that he's coming around due to the numbers of cases and the results. Let's face it for many of us, you just need to put the x-rays side by side to see that improvement. Now does it mean no surgery, hopefully, but we don't know yet. That's going to be his arguement. It's also a smart move on his part to be involved in the improvement of care for these little ones. Let's face it, his identity is great and he wants to keep that up. When I went to Children's a couple of months ago, Karlin told me that the number of cases in infantiles was growing versus years of the past. This may also have something to do with it. They want to have the best options at their disposal to help. Take care, talk to you soon. Jerry Marissa's Dad Re: Marissa's First Cast I am so afraid to send a message with all this virus stuff going on. This is my first attempt since thursday. Jerry, Good news and great correction! Trimming and pedaling is the worst. Jake did a little better the second time around. Hope Marissa does, too. It sure adds to the anxiety that day, doesn't it? She'll be back to her old self as far as getting around very quickly if she hasn't already done so!! Way to go, Marissa :-) Fantastic news about Emans. As you know we've been to Children's as well. When we mentioned again to our ortho (last Nov) about casting, he dismissed the notion completely. Hopefully they are coming around! Good news indeed that early treatment is catching on!!!! Smiles, mom to and Jake > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Jerry, Glad Marissa is doing well. And it's a good thing that she got the thinner cast as far as balancing goes. Jake's first one was way more thick and bulky than this one, and it is now less noticeable under his clothes. It's amazing how quickly we can now fill up the carriage at Wal-mart when buying all the things we need for a diaper change, isn't it? We're still doing the tuck technique, too. I never did cut the shirt like I thought of doing. (Jenn C- did you cut and tape the shirt to the cast like was discussed? If so, how is that working for you?) It is now stretched out beyond recognition and has no more elasticity. You're right about Emans. Probably wants to be " in the know " as far as this treatment goes. Will he come over to our way of thinking? Not sure. Our doc (Khoury) told us of a trial they are trying to get approval for - which kids have better lung capacity -- those treated with veptr or those with casting - and Dr. Eman wants to be affiliated with the veptr side. Not sure if it will ever come to fruition but they are working on it. Interesting, huh? mom to and Jake Jerry Lamarre <gerard_lamarre@...> wrote: Jenn, Marissa is now back to her old self, very playful little one. She is so happy in her environment that you can see a difference when she's away for a couple of days. She's doing OK balance wise except now she's a little top-heavy. She is so intent on keeping up with her brother that she is sometimes very daring with running and climbing that she falls. Diapering is let's say a challenge. We've gone through at least four different methods. The latest is taking a smaller diaper(number 2) and stuffing it under. We also have a pad in the the diaper to absorb stuff as fast as possible for little leakage. We then use tenderskin tape to tape the diaper to the pulled up shirt, thus the diaper cannot fall down. We then put a pull up over it to ensure it stays. So far, so good, however changing is a challenge. She cannot stand changing. As far as Emans, I think that he's coming around due to the numbers of cases and the results. Let's face it for many of us, you just need to put the x-rays side by side to see that improvement. Now does it mean no surgery, hopefully, but we don't know yet. That's going to be his arguement. It's also a smart move on his part to be involved in the improvement of care for these little ones. Let's face it, his identity is great and he wants to keep that up. When I went to Children's a couple of months ago, Karlin told me that the number of cases in infantiles was growing versus years of the past. This may also have something to do with it. They want to have the best options at their disposal to help. Take care, talk to you soon. Jerry Marissa's Dad Re: Marissa's First Cast I am so afraid to send a message with all this virus stuff going on. This is my first attempt since thursday. Jerry, Good news and great correction! Trimming and pedaling is the worst. Jake did a little better the second time around. Hope Marissa does, too. It sure adds to the anxiety that day, doesn't it? She'll be back to her old self as far as getting around very quickly if she hasn't already done so!! Way to go, Marissa :-) Fantastic news about Emans. As you know we've been to Children's as well. When we mentioned again to our ortho (last Nov) about casting, he dismissed the notion completely. Hopefully they are coming around! Good news indeed that early treatment is catching on!!!! Smiles, mom to and Jake > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Jenn, Yes, we taped the shirt. While it makes diapering much easier, I still am not a fan of it. I do not like being able to see down into the cast. I used to check every day with a flashlight to see if there were sores. One thing I notice though, he doesn't seem itchy like he did in the other one. If his skin looks better as far as dryness when it comes off, then I will stay with the shirt. Otherwise, I may request not to have it next time. VERY interesting about that study. If they do it, I would be more than willing to let Ian participate. Noelle (12-2-01) Ian (8-15-04) Re: Marissa's First Cast I am so afraid to send a message with all this virus stuff going on. This is my first attempt since thursday. Jerry, Good news and great correction! Trimming and pedaling is the worst. Jake did a little better the second time around. Hope Marissa does, too. It sure adds to the anxiety that day, doesn't it? She'll be back to her old self as far as getting around very quickly if she hasn't already done so!! Way to go, Marissa :-) Fantastic news about Emans. As you know we've been to Children's as well. When we mentioned again to our ortho (last Nov) about casting, he dismissed the notion completely. Hopefully they are coming around! Good news indeed that early treatment is catching on!!!! Smiles, mom to and Jake > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Yeah, I don't like not being able to see Jake's bellybutton either. The last time it was always red and irritated, and I could wash it out (with Q-tip of course) and dry it well. I hope it's okay now. As for the study, I think Khoury mentioned that they cannot use the children that are currently being casted. After/If the study gets approved, they have to use new patients after the required date. Too bad, huh? mom to and Jake Claflin <noellesmommy@...> wrote: Jenn, Yes, we taped the shirt. While it makes diapering much easier, I still am not a fan of it. I do not like being able to see down into the cast. I used to check every day with a flashlight to see if there were sores. One thing I notice though, he doesn't seem itchy like he did in the other one. If his skin looks better as far as dryness when it comes off, then I will stay with the shirt. Otherwise, I may request not to have it next time. VERY interesting about that study. If they do it, I would be more than willing to let Ian participate. Noelle (12-2-01) Ian (8-15-04) Re: Marissa's First Cast I am so afraid to send a message with all this virus stuff going on. This is my first attempt since thursday. Jerry, Good news and great correction! Trimming and pedaling is the worst. Jake did a little better the second time around. Hope Marissa does, too. It sure adds to the anxiety that day, doesn't it? She'll be back to her old self as far as getting around very quickly if she hasn't already done so!! Way to go, Marissa :-) Fantastic news about Emans. As you know we've been to Children's as well. When we mentioned again to our ortho (last Nov) about casting, he dismissed the notion completely. Hopefully they are coming around! Good news indeed that early treatment is catching on!!!! Smiles, mom to and Jake > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 jennifer v., it's interesting about that study since dr. emans does not even recommend veptr for infantile/idiopathic cases (according to his response to my e-mail during the veptr surgery webcast). i have other things i could say, but i don't think i should in a public forum. enough said. deshea P.s. i wonder if lucas will get the shirt next week in erie? i wonder if i'll have any say so. i would prefer not having it since i do love to see his belly and i put temporary tattoos on his belly for fun. we'll just have to see. [;-)] ---- Original message ---- >Date: Wed, 8 Feb 2006 10:27:36 -0800 (PST) >From: Viveiros <jviv314@...> >Subject: Re: Re: Marissa's First Cast >infantile scoliosis treatment > > Yeah, I don't like not being able to see Jake's > bellybutton either. The last time it was always red > and irritated, and I could wash it out (with Q-tip > of course) and dry it well. I hope it's okay now. > > As for the study, I think Khoury mentioned that > they cannot use the children that are currently > being casted. After/If the study gets approved, > they have to use new patients after the required > date. Too bad, huh? > > > mom to and Jake > > Claflin <noellesmommy@...> wrote: > Jenn, > > Yes, we taped the shirt. While it makes diapering > much easier, I still am not a fan of it. I do not > like being able to see down into the cast. I used to > check every day with a flashlight to see if there > were sores. One thing I notice though, he doesn't > seem itchy like he did in the other one. If his skin > looks better as far as dryness when it comes off, > then I will stay with the shirt. Otherwise, I may > request not to have it next time. > > VERY interesting about that study. If they do it, I > would be more than willing to let Ian participate. > > > Noelle (12-2-01) > Ian (8-15-04) > Re: Marissa's First > Cast > > I am so afraid to send a message with all this virus > stuff going on. > This is my first attempt since thursday. > > Jerry, > > Good news and great correction! Trimming and > pedaling is the worst. > Jake did a little better the second time around. > Hope Marissa does, > too. It sure adds to the anxiety that day, doesn't > it? She'll be > back to her old self as far as getting around very > quickly if she > hasn't already done so!! Way to go, Marissa :-) > > Fantastic news about Emans. As you know we've been > to Children's as > well. When we mentioned again to our ortho (last > Nov) about casting, > he dismissed the notion completely. Hopefully they > are coming > around! Good news indeed that early treatment is > catching on!!!! > > Smiles, > > mom to and Jake > > > > > > Jerry, > > > > Thanks for the update on Marissa and the success > of her 1st cast! > 40 to > > 19 is significant correction, and with the growing > she has ahead of > her, > > more success will follow. Fabulous! > > About Emans...Wow! This is the best news ever! I > have been > waiting for > > this news for a couple of years.....Deshea, > , !! Did > you > > read that!!! Awsome news! > > > > Thanks for sharing that tid-bit of info with us, > Jerry. > > > > Finally, early treatment is catching on. Thanks to > Miss Mehta, > these > > wonderful Shriners docs, and dedicated parents!! > > > > Fantastic! > > > > HRH > > > > > > > Hope all is well with everyone. We returned back > from Erie this > week with > > > Marissa's first cast. Other than the flight > cancellations, the > trip went > > > very well. As you all coached me, the team at > Shriner's did a > fantastic > > > job with everything. Marissa actually continued > her improvement > while in > > > a brace as her out of brace curve fell to 40 > from 46 three weeks > ago. We > > > actually left her out of the brace the day > before so she could > travel > > > brace free. Also, her top curve is cured. Dr. > said the > there is > > > no rotation at all and everything looks much > better than it was > even three > > > weeks ago just by looking at her back. This was > great news as I > always > > > hold out hope that it may resolve. That's my one > fear, that I'm > > > overtreating my little girl. However, I know, > this is a lesser > evil than > > > not going after correction. > > > > > > Her casting started at 7 and took less than an > hour. She was > very good > > > with the anesthesia as she woke up even before > we got there. Dr. > > > > showed us the after cast x-ray and we were very > pleased. Her > curve is now > > > down to 19. He was very happy with the results. > The one downer > of the > > > whole trip is that he really wouldn't suggest a > timetable or > prognosis on > > > the future as he says it's very variable by > child. He does think > however > > > that it'll be less than previously thought due > to her very > accommodating > > > flexible spine and significant growth potential > in the cast. His > previous > > > thoughts were two years. > > > > > > The actual worst part for Marissa was the > trimming. We needed to > go back > > > downstairs twice for trimming to fine tune the > areas needed and > boy did > > > she not like this. Good thing Sue went quick. > She did a great > job > > > trimming quickly. By 1 PM, Marissa was pretty > much her normal > self with > > > the exception that she's still adjusting to the > cast versus the > brace. > > > The cast front upper part is definitely new to > her as the brace > only went > > > up to mid chest. She also over the past day or > so is starting to > learn > > > that she needs to change things up a bit to do > what she wants in > regards > > > to climbing etc. I do think the brace was easier > for her to > move, but > > > it's early on yet and only time will tell. > Diapering as you all > know is > > > altogether a challenge. So far, it's fold, tuck > under, tape to > shirt, > > > pull-ups over it and pray. Two days --- no > issues -- knock on > wood. I've > > > noticed that the tape we have here at home works > very well in > holding the > > > diaper in place in case it comes untucked. It's > a tenderskin > tape that > > > can go on skin. We tape up the front and back > sides to the > shirt. The > > > hospital uses 3M Microporous, it's the same > thing. > > > > > > Well, we'll see how it goes and my wife and I > are very grateful > for > > > everyone's help on this board. News is > travelling as Dr. > told me > > > Dr. Emans is going to Erie to see this procedure > and learn more > about it. > > > Bottom line is I'm sure the Harvard educated > docs don't like the > fact that > > > folks are passing up their care for something > else that > apparantly is > > > having some success. Just look at x-rays and > that tells you the > story. > > > This is good news as hopefully someday, it'll be > treated in more > hospitals > > > and regions. > > > > > > Jerry > > > Marissa's Dad > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Bummer about the study, but I really hope they do it. I think it may really help to promote casting as a treatment if they have hard evidence to show how great it is. Noelle (12-2-01) Ian (8-15-04) Re: Marissa's First Cast I am so afraid to send a message with all this virus stuff going on. This is my first attempt since thursday. Jerry, Good news and great correction! Trimming and pedaling is the worst. Jake did a little better the second time around. Hope Marissa does, too. It sure adds to the anxiety that day, doesn't it? She'll be back to her old self as far as getting around very quickly if she hasn't already done so!! Way to go, Marissa :-) Fantastic news about Emans. As you know we've been to Children's as well. When we mentioned again to our ortho (last Nov) about casting, he dismissed the notion completely. Hopefully they are coming around! Good news indeed that early treatment is catching on!!!! Smiles, mom to and Jake > > Jerry, > > Thanks for the update on Marissa and the success of her 1st cast! 40 to > 19 is significant correction, and with the growing she has ahead of her, > more success will follow. Fabulous! > About Emans...Wow! This is the best news ever! I have been waiting for > this news for a couple of years.....Deshea, , !! Did you > read that!!! Awsome news! > > Thanks for sharing that tid-bit of info with us, Jerry. > > Finally, early treatment is catching on. Thanks to Miss Mehta, these > wonderful Shriners docs, and dedicated parents!! > > Fantastic! > > HRH > > > > Hope all is well with everyone. We returned back from Erie this week with > > Marissa's first cast. Other than the flight cancellations, the trip went > > very well. As you all coached me, the team at Shriner's did a fantastic > > job with everything. Marissa actually continued her improvement while in > > a brace as her out of brace curve fell to 40 from 46 three weeks ago. We > > actually left her out of the brace the day before so she could travel > > brace free. Also, her top curve is cured. Dr. said the there is > > no rotation at all and everything looks much better than it was even three > > weeks ago just by looking at her back. This was great news as I always > > hold out hope that it may resolve. That's my one fear, that I'm > > overtreating my little girl. However, I know, this is a lesser evil than > > not going after correction. > > > > Her casting started at 7 and took less than an hour. She was very good > > with the anesthesia as she woke up even before we got there. Dr. > > showed us the after cast x-ray and we were very pleased. Her curve is now > > down to 19. He was very happy with the results. The one downer of the > > whole trip is that he really wouldn't suggest a timetable or prognosis on > > the future as he says it's very variable by child. He does think however > > that it'll be less than previously thought due to her very accommodating > > flexible spine and significant growth potential in the cast. His previous > > thoughts were two years. > > > > The actual worst part for Marissa was the trimming. We needed to go back > > downstairs twice for trimming to fine tune the areas needed and boy did > > she not like this. Good thing Sue went quick. She did a great job > > trimming quickly. By 1 PM, Marissa was pretty much her normal self with > > the exception that she's still adjusting to the cast versus the brace. > > The cast front upper part is definitely new to her as the brace only went > > up to mid chest. She also over the past day or so is starting to learn > > that she needs to change things up a bit to do what she wants in regards > > to climbing etc. I do think the brace was easier for her to move, but > > it's early on yet and only time will tell. Diapering as you all know is > > altogether a challenge. So far, it's fold, tuck under, tape to shirt, > > pull-ups over it and pray. Two days --- no issues -- knock on wood. I've > > noticed that the tape we have here at home works very well in holding the > > diaper in place in case it comes untucked. It's a tenderskin tape that > > can go on skin. We tape up the front and back sides to the shirt. The > > hospital uses 3M Microporous, it's the same thing. > > > > Well, we'll see how it goes and my wife and I are very grateful for > > everyone's help on this board. News is travelling as Dr. told me > > Dr. Emans is going to Erie to see this procedure and learn more about it. > > Bottom line is I'm sure the Harvard educated docs don't like the fact that > > folks are passing up their care for something else that apparantly is > > having some success. Just look at x-rays and that tells you the story. > > This is good news as hopefully someday, it'll be treated in more hospitals > > and regions. > > > > Jerry > > Marissa's Dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 I know; I was surprised when Khoury mentioned it to me. Can't help but wonder what it means and how/if Emans is changing his position on things? I put tattoos on Jake's tummy, too, after you mentioned it once. He loved it. I think they're putting the shirt now because the cast has very little padding and so the plaster itself is not rubbing directly on the skin. Does this sound right? I will say that Jake seems to sweat more with the shirt vs. no shirt. Glad it's not yet summer. " Deshea L. " <deshea@...> wrote: jennifer v., it's interesting about that study since dr. emans does not even recommend veptr for infantile/idiopathic cases (according to his response to my e-mail during the veptr surgery webcast). i have other things i could say, but i don't think i should in a public forum. enough said. deshea P.s. i wonder if lucas will get the shirt next week in erie? i wonder if i'll have any say so. i would prefer not having it since i do love to see his belly and i put temporary tattoos on his belly for fun. we'll just have to see. [;-)] ---- Original message ---- >Date: Wed, 8 Feb 2006 10:27:36 -0800 (PST) >From: Viveiros >Subject: Re: Re: Marissa's First Cast >infantile scoliosis treatment > > Yeah, I don't like not being able to see Jake's > bellybutton either. The last time it was always red > and irritated, and I could wash it out (with Q-tip > of course) and dry it well. I hope it's okay now. > > As for the study, I think Khoury mentioned that > they cannot use the children that are currently > being casted. After/If the study gets approved, > they have to use new patients after the required > date. Too bad, huh? > > > mom to and Jake > > Claflin wrote: > Jenn, > > Yes, we taped the shirt. While it makes diapering > much easier, I still am not a fan of it. I do not > like being able to see down into the cast. I used to > check every day with a flashlight to see if there > were sores. One thing I notice though, he doesn't > seem itchy like he did in the other one. If his skin > looks better as far as dryness when it comes off, > then I will stay with the shirt. Otherwise, I may > request not to have it next time. > > VERY interesting about that study. If they do it, I > would be more than willing to let Ian participate. > > > Noelle (12-2-01) > Ian (8-15-04) > Re: Marissa's First > Cast > > I am so afraid to send a message with all this virus > stuff going on. > This is my first attempt since thursday. > > Jerry, > > Good news and great correction! Trimming and > pedaling is the worst. > Jake did a little better the second time around. > Hope Marissa does, > too. It sure adds to the anxiety that day, doesn't > it? She'll be > back to her old self as far as getting around very > quickly if she > hasn't already done so!! Way to go, Marissa :-) > > Fantastic news about Emans. As you know we've been > to Children's as > well. When we mentioned again to our ortho (last > Nov) about casting, > he dismissed the notion completely. Hopefully they > are coming > around! Good news indeed that early treatment is > catching on!!!! > > Smiles, > > mom to and Jake > > > > > > Jerry, > > > > Thanks for the update on Marissa and the success > of her 1st cast! > 40 to > > 19 is significant correction, and with the growing > she has ahead of > her, > > more success will follow. Fabulous! > > About Emans...Wow! This is the best news ever! I > have been > waiting for > > this news for a couple of years.....Deshea, > , !! Did > you > > read that!!! Awsome news! > > > > Thanks for sharing that tid-bit of info with us, > Jerry. > > > > Finally, early treatment is catching on. Thanks to > Miss Mehta, > these > > wonderful Shriners docs, and dedicated parents!! > > > > Fantastic! > > > > HRH > > > > > > > Hope all is well with everyone. We returned back > from Erie this > week with > > > Marissa's first cast. Other than the flight > cancellations, the > trip went > > > very well. As you all coached me, the team at > Shriner's did a > fantastic > > > job with everything. Marissa actually continued > her improvement > while in > > > a brace as her out of brace curve fell to 40 > from 46 three weeks > ago. We > > > actually left her out of the brace the day > before so she could > travel > > > brace free. Also, her top curve is cured. Dr. > said the > there is > > > no rotation at all and everything looks much > better than it was > even three > > > weeks ago just by looking at her back. This was > great news as I > always > > > hold out hope that it may resolve. That's my one > fear, that I'm > > > overtreating my little girl. However, I know, > this is a lesser > evil than > > > not going after correction. > > > > > > Her casting started at 7 and took less than an > hour. She was > very good > > > with the anesthesia as she woke up even before > we got there. Dr. > > > > showed us the after cast x-ray and we were very > pleased. Her > curve is now > > > down to 19. He was very happy with the results. > The one downer > of the > > > whole trip is that he really wouldn't suggest a > timetable or > prognosis on > > > the future as he says it's very variable by > child. He does think > however > > > that it'll be less than previously thought due > to her very > accommodating > > > flexible spine and significant growth potential > in the cast. His > previous > > > thoughts were two years. > > > > > > The actual worst part for Marissa was the > trimming. We needed to > go back > > > downstairs twice for trimming to fine tune the > areas needed and > boy did > > > she not like this. Good thing Sue went quick. > She did a great > job > > > trimming quickly. By 1 PM, Marissa was pretty > much her normal > self with > > > the exception that she's still adjusting to the > cast versus the > brace. > > > The cast front upper part is definitely new to > her as the brace > only went > > > up to mid chest. She also over the past day or > so is starting to > learn > > > that she needs to change things up a bit to do > what she wants in > regards > > > to climbing etc. I do think the brace was easier > for her to > move, but > > > it's early on yet and only time will tell. > Diapering as you all > know is > > > altogether a challenge. So far, it's fold, tuck > under, tape to > shirt, > > > pull-ups over it and pray. Two days --- no > issues -- knock on > wood. I've > > > noticed that the tape we have here at home works > very well in > holding the > > > diaper in place in case it comes untucked. It's > a tenderskin > tape that > > > can go on skin. We tape up the front and back > sides to the > shirt. The > > > hospital uses 3M Microporous, it's the same > thing. > > > > > > Well, we'll see how it goes and my wife and I > are very grateful > for > > > everyone's help on this board. News is > travelling as Dr. > told me > > > Dr. Emans is going to Erie to see this procedure > and learn more > about it. > > > Bottom line is I'm sure the Harvard educated > docs don't like the > fact that > > > folks are passing up their care for something > else that > apparantly is > > > having some success. Just look at x-rays and > that tells you the > story. > > > This is good news as hopefully someday, it'll be > treated in more > hospitals > > > and regions. > > > > > > Jerry > > > Marissa's Dad > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 oh yeah, sweating! this is why i don't really want lucas to be in the shirt since he is older and has the cast on longer. it will be may/june before his next cast change, and i don't want to start up the a/c so soon . . . deshea ---- Original message ---- >Date: Wed, 8 Feb 2006 10:45:52 -0800 (PST) >From: Viveiros <jviv314@...> >Subject: Re: Re: Marissa's First Cast >infantile scoliosis treatment > > I know; I was surprised when Khoury mentioned it to > me. Can't help but wonder what it means and how/if > Emans is changing his position on things? > > I put tattoos on Jake's tummy, too, after you > mentioned it once. He loved it. I think they're > putting the shirt now because the cast has very > little padding and so the plaster itself is not > rubbing directly on the skin. Does this sound > right? I will say that Jake seems to sweat more > with the shirt vs. no shirt. Glad it's not yet > summer. > > > " Deshea L. " <deshea@...> wrote: > jennifer v., > > it's interesting about that study since dr. emans > does not > even recommend veptr for infantile/idiopathic cases > (according > to his response to my e-mail during the veptr > surgery > webcast). i have other things i could say, but i > don't think > i should in a public forum. enough said. > > deshea > > P.s. i wonder if lucas will get the shirt next week > in erie? > i wonder if i'll have any say so. i would prefer not > having > it since i do love to see his belly and i put > temporary > tattoos on his belly for fun. we'll just have to > see. [;-)] > > ---- Original message ---- > >Date: Wed, 8 Feb 2006 10:27:36 -0800 (PST) > >From: Viveiros > >Subject: Re: Re: Marissa's > First Cast > >infantile scoliosis treatment > > > > Yeah, I don't like not being able to see Jake's > > bellybutton either. The last time it was always > red > > and irritated, and I could wash it out (with Q-tip > > of course) and dry it well. I hope it's okay now. > > > > As for the study, I think Khoury mentioned that > > they cannot use the children that are currently > > being casted. After/If the study gets approved, > > they have to use new patients after the required > > date. Too bad, huh? > > > > > > mom to and Jake > > > > Claflin wrote: > > Jenn, > > > > Yes, we taped the shirt. While it makes diapering > > much easier, I still am not a fan of it. I do not > > like being able to see down into the cast. I used > to > > check every day with a flashlight to see if there > > were sores. One thing I notice though, he doesn't > > seem itchy like he did in the other one. If his > skin > > looks better as far as dryness when it comes off, > > then I will stay with the shirt. Otherwise, I may > > request not to have it next time. > > > > VERY interesting about that study. If they do it, > I > > would be more than willing to let Ian participate. > > > > > > Noelle (12-2-01) > > Ian (8-15-04) > > Re: Marissa's First > > Cast > > > > I am so afraid to send a message with all this > virus > > stuff going on. > > This is my first attempt since thursday. > > > > Jerry, > > > > Good news and great correction! Trimming and > > pedaling is the worst. > > Jake did a little better the second time around. > > Hope Marissa does, > > too. It sure adds to the anxiety that day, doesn't > > it? She'll be > > back to her old self as far as getting around very > > quickly if she > > hasn't already done so!! Way to go, Marissa :-) > > > > Fantastic news about Emans. As you know we've been > > to Children's as > > well. When we mentioned again to our ortho (last > > Nov) about casting, > > he dismissed the notion completely. Hopefully they > > are coming > > around! Good news indeed that early treatment is > > catching on!!!! > > > > Smiles, > > > > mom to and Jake > > > > > > > > > > Jerry, > > > > > > Thanks for the update on Marissa and the success > > of her 1st cast! > > 40 to > > > 19 is significant correction, and with the > growing > > she has ahead of > > her, > > > more success will follow. Fabulous! > > > About Emans...Wow! This is the best news ever! I > > have been > > waiting for > > > this news for a couple of years.....Deshea, > > , !! Did > > you > > > read that!!! Awsome news! > > > > > > Thanks for sharing that tid-bit of info with us, > > Jerry. > > > > > > Finally, early treatment is catching on. Thanks > to > > Miss Mehta, > > these > > > wonderful Shriners docs, and dedicated parents!! > > > > > > Fantastic! > > > > > > HRH > > > > > > > > > > Hope all is well with everyone. We returned > back > > from Erie this > > week with > > > > Marissa's first cast. Other than the flight > > cancellations, the > > trip went > > > > very well. As you all coached me, the team at > > Shriner's did a > > fantastic > > > > job with everything. Marissa actually > continued > > her improvement > > while in > > > > a brace as her out of brace curve fell to 40 > > from 46 three weeks > > ago. We > > > > actually left her out of the brace the day > > before so she could > > travel > > > > brace free. Also, her top curve is cured. Dr. > > said the > > there is > > > > no rotation at all and everything looks much > > better than it was > > even three > > > > weeks ago just by looking at her back. This > was > > great news as I > > always > > > > hold out hope that it may resolve. That's my > one > > fear, that I'm > > > > overtreating my little girl. However, I know, > > this is a lesser > > evil than > > > > not going after correction. > > > > > > > > Her casting started at 7 and took less than an > > hour. She was > > very good > > > > with the anesthesia as she woke up even before > > we got there. Dr. > > > > > > showed us the after cast x-ray and we were > very > > pleased. Her > > curve is now > > > > down to 19. He was very happy with the > results. > > The one downer > > of the > > > > whole trip is that he really wouldn't suggest > a > > timetable or > > prognosis on > > > > the future as he says it's very variable by > > child. He does think > > however > > > > that it'll be less than previously thought due > > to her very > > accommodating > > > > flexible spine and significant growth > potential > > in the cast. His > > previous > > > > thoughts were two years. > > > > > > > > The actual worst part for Marissa was the > > trimming. We needed to > > go back > > > > downstairs twice for trimming to fine tune the > > areas needed and > > boy did > > > > she not like this. Good thing Sue went quick. > > She did a great > > job > > > > trimming quickly. By 1 PM, Marissa was pretty > > much her normal > > self with > > > > the exception that she's still adjusting to > the > > cast versus the > > brace. > > > > The cast front upper part is definitely new to > > her as the brace > > only went > > > > up to mid chest. She also over the past day or > > so is starting to > > learn > > > > that she needs to change things up a bit to do > > what she wants in > > regards > > > > to climbing etc. I do think the brace was > easier > > for her to > > move, but > > > > it's early on yet and only time will tell. > > Diapering as you all > > know is > > > > altogether a challenge. So far, it's fold, > tuck > > under, tape to > > shirt, > > > > pull-ups over it and pray. Two days --- no > > issues -- knock on > > wood. I've > > > > noticed that the tape we have here at home > works > > very well in > > holding the > > > > diaper in place in case it comes untucked. > It's > > a tenderskin > > tape that > > > > can go on skin. We tape up the front and back > > sides to the > > shirt. The > > > > hospital uses 3M Microporous, it's the same > > thing. > > > > > > > > Well, we'll see how it goes and my wife and I > > are very grateful > > for > > > > everyone's help on this board. News is > > travelling as Dr. > > told me > > > > Dr. Emans is going to Erie to see this > procedure > > and learn more > > about it. > > > > Bottom line is I'm sure the Harvard educated > > docs don't like the > > fact that > > > > folks are passing up their care for something > > else that > > apparantly is > > > > having some success. Just look at x-rays and > > that tells you the > > story. > > > > This is good news as hopefully someday, it'll > be > > treated in more > > hospitals > > > > and regions. > > > > > > > > Jerry > > > > Marissa's Dad > > > > > > > Quote Link to comment Share on other sites More sharing options...
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