Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Ian's orthopedic visit was today. It went well, as usual. We all really like Dr. Gupta, he is very well informed, has a great manner with Ian, is genuinely interested in his patients and is a doctor with a mission!! Ian's spine looks fine, no problems there. His leg discrepancy is getting larger, it went from 1/2 inch to 5/8 inch- 3mm difference from his last visit 10 months ago. We talked at some length of various subjects, his opinion of GH regarding Ian, limb lengthening, etc.. His opinion is very strong that Ian SHOULD NOT receive growth hormone since it is not going to help him achieve a taller final height. His opinion is that since he will not gain any inches ,there is not enough data on the various affects that GH has to other areas of your body is not significant enough to justify GH treatment. He strongly urged us to work on developing self esteem and to think of joining Little People Of America. He spoke to us about limb lengthening-explained to us that at final height, if the variance is between 2-4 cm, then the LONGER LEG IS SHORTENED. If the variance is over 5cm, then it will require TWO surgeries to achieve level leg lengths.. His point about limb lengthening is not specifically geared for adding height, but to even out the variance in leg difference. He told me to find out from the parents of the older parents what was the discrepancy of leg length, what age was this and what was the bone age of the child at this point?? So, if anyone would reply to me concerning this, I would much appreciate it. Also, he would like to know more about limb lengthening regarding an RSS child specifically, so told me to find out if any info could get passed on to me concerning this or if he could find out a doctor who oversaw such a case. Ian is his only orthopedic patient with RSS, so he would like to gather as much info as he can to be armed with to review and learn about. He will definitely be Ian's ped ortho over the long haul, so the more he knows about this, the better. He told me that if limb lengthening is something we might consider, to do research on it and should decide by time he is 7 or 8 because there are only 2 places he would send us-Baltimore & Italy and there is a long waiting list for this surgery!! He gave the age of 12 when he told us to get on a list by 7 or 8, that is one long list!!! I am involved with parent advocacy for special needs kids and he actually gives some of the workshops that the group schedules. He spoke at the annual conference last year, which included Kemp, CEO of Very Special Arts and Ted Kennedy Jr. He sits on an internal review board at the children's hospital here and had me write a letter to the hospital explaining why I chose to take an for a 40 min to his private practice instead of a 15 min drive to see him at the hospital clinic-the ortho clinic there is horrible~~ Anway, he also would like to create a website that would offer info to parents of special needs children regarding the various insurance plans and what they cover in regards to what the children would need.. Like I said, he's a doctor with a mission!! I feel very fortunate that we have two such great specialists overseeing Ian's long term care.. Wish I could say that for everyone else. Missy mom to Ian <br><hr size=1><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Missy, Thanks for telling us about Dr. Gupta. I'd be interesting in hearing about any websites or publications he writes. One concern for Tim's and perhaps others' assymetries is that it is his skinnier leg that is somewhat shorter... I wonder how limb lengthening would affect stability and strength in such a case? I knew a brave little girl who around 10 years ago had this done, and it was a painful procedure of breaking bones several times and separating them with plates so that new bone would grow a little at a time. She made the decision to do it herself. Inga At 01:55 PM 9/8/99 -0700, Missy Shost wrote: >Ian's orthopedic visit was today. It went well, as usual. We all really like Dr. Gupta, he is very well informed, has a great manner with Ian, is genuinely interested in his patients and is a doctor with a mission!! Ian's spine looks fine, no problems there. His leg discrepancy is getting larger, it went from 1/2 inch to 5/8 inch- 3mm difference from his last visit 10 months ago. We talked at some length of various subjects, his opinion of GH regarding Ian, limb lengthening, etc.. His opinion is very strong that Ian SHOULD NOT receive growth hormone since it is not going to help him achieve a taller final height. His opinion is that since he will not gain any inches ,there is not enough data on the various affects that GH has to other areas of your body is not significant enough to justify GH treatment. He strongly urged us to work on developing self esteem and to think of joining Little People Of America. He spoke to us about limb lengthening-explained to us that at ! >! >final height, if the variance is between 2-4 cm, then the LONGER LEG IS SHORTENED. If the variance is over 5cm, then it will require TWO surgeries to achieve level leg lengths.. His point about limb lengthening is not specifically geared for adding height, but to even out the variance in leg difference. He told me to find out from the parents of the older parents what was the discrepancy of leg length, what age was this and what was the bone age of the child at this point?? So, if anyone would reply to me concerning this, I would much appreciate it. Also, he would like to know more about limb lengthening regarding an RSS child specifically, so told me to find out if any info could get passed on to me concerning this or if he could find out a doctor who oversaw such a case. Ian is his only orthopedic patient with RSS, so he would like to gather as much info as he can to be armed with to review and learn about. He will definitely be Ian's ped ortho over the long haul, so th! >! >e more he knows about this, the better. He told me that if limb lengthening is something we might consider, to do research on it and should decide by time he is 7 or 8 because there are only 2 places he would send us-Baltimore & Italy and there is a long waiting list for this surgery!! He gave the age of 12 when he told us to get on a list by 7 or 8, that is one long list!!! > I am involved with parent advocacy for special needs kids and he actually gives some of the workshops that the group schedules. He spoke at the annual conference last year, which included Kemp, CEO of Very Special Arts and Ted Kennedy Jr. He sits on an internal review board at the children's hospital here and had me write a letter to the hospital explaining why I chose to take an for a 40 min to his private practice instead of a 15 min drive to see him at the hospital clinic-the ortho clinic there is horrible~~ Anway, he also would like to create a website that would offer info to parents of special needs children regarding the various insurance plans and what they cover in regards to what the children would need.. Like I said, he's a doctor with a mission!! I feel very fortunate that we have two such great specialists overseeing Ian's long term care.. Wish I could say that for everyone else. > >Missy >mom to Ian > ><br><hr size=1><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 Missy Now this is unlikely to clarify anything, but should give you and the ortho's something to discuss. The child growth foundation in the UK states in it's literature on RSS, ref limb lengthening that the shorter leg must always be lengthened, not the longer shortened, despite what some ortho's suggest! Still, there's no surprise in the fact that medical opinion is so contradictory! is 3 1/2 now, and we have been advised that lengthening will not be done before he approaches his final height. But what was your ortho's basis for suggesting that GH would not help his height? Was that peculiar to assymetry, or yet again just a different opinion? Quote Link to comment Share on other sites More sharing options...
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