Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 Hi All, I want to thank this list for your warm welcome and wish I had a chance to respond sooner. Just to let you know my daughter has assimilated well into school. I do have a question about the long-term effects of RSS. I recall reading a post that addressed diseases or conditions that RSS adults are more susceptible to than that general population but cannot find it now. Does anyone have information regarding this? Mimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 Mimi, To my knowledge, RSS kids are not anymore likely to get any disease in particular. I know there has been some talk about insulin and/or gh resistance, but that is all. And they are easy to handle. We just need to be aware of the POSSIBILITY. Jodi >From: chiefssw@... >Reply-To: RSS-Support >To: RSS-Support >Subject: Long-term Diseases >Date: Sat, 15 Sep 2001 11:56:28 -0000 > >Hi All, > >I want to thank this list for your warm welcome and wish I had a >chance to respond sooner. Just to let you know my daughter has >assimilated well into school. > >I do have a question about the long-term effects of RSS. I recall >reading a post that addressed diseases or conditions that RSS adults >are more susceptible to than that general population but cannot find >it now. Does anyone have information regarding this? > >Mimi > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 Mimi, To my knowledge, RSS kids are not anymore likely to get any disease in particular. I know there has been some talk about insulin and/or gh resistance, but that is all. And they are easy to handle. We just need to be aware of the POSSIBILITY. Jodi >From: chiefssw@... >Reply-To: RSS-Support >To: RSS-Support >Subject: Long-term Diseases >Date: Sat, 15 Sep 2001 11:56:28 -0000 > >Hi All, > >I want to thank this list for your warm welcome and wish I had a >chance to respond sooner. Just to let you know my daughter has >assimilated well into school. > >I do have a question about the long-term effects of RSS. I recall >reading a post that addressed diseases or conditions that RSS adults >are more susceptible to than that general population but cannot find >it now. Does anyone have information regarding this? > >Mimi > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2001 Report Share Posted September 16, 2001 Mimi - Not remembering what document or email you are referring to. I did find an interesting point of info in Dr. Harbison's presentation at the MAGIC convention in July. She was showing some statistics on about, shoot, can't remember but think it was 100 or so RSS patients. Anyways, it was comparing weight for height ratios for untreated RSS patients versus " treated " ones on GH. It actually found that the ratio was too high for untreated!!! That as an RSS patient hit puberty and adulthood, their weight as a proportion for height ended up being larger than that proportion for those patients on GH. Then she went on a large talk about the growing incidence of Type II diabetes in this country, etc. But I am completely unfamiliar with any documented info that an RSS adult has a greater likelihood of any disease or problem than a non-RSS adult. RSS-Support wrote: > Hi All, > > I want to thank this list for your warm welcome and wish I had a > chance to respond sooner. Just to let you know my daughter has > assimilated well into school. > > I do have a question about the long-term effects of RSS. I recall > reading a post that addressed diseases or conditions that RSS adults > are more susceptible to than that general population but cannot find > it now. Does anyone have information regarding this? > > Mimi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2001 Report Share Posted September 16, 2001 Mimi - Not remembering what document or email you are referring to. I did find an interesting point of info in Dr. Harbison's presentation at the MAGIC convention in July. She was showing some statistics on about, shoot, can't remember but think it was 100 or so RSS patients. Anyways, it was comparing weight for height ratios for untreated RSS patients versus " treated " ones on GH. It actually found that the ratio was too high for untreated!!! That as an RSS patient hit puberty and adulthood, their weight as a proportion for height ended up being larger than that proportion for those patients on GH. Then she went on a large talk about the growing incidence of Type II diabetes in this country, etc. But I am completely unfamiliar with any documented info that an RSS adult has a greater likelihood of any disease or problem than a non-RSS adult. RSS-Support wrote: > Hi All, > > I want to thank this list for your warm welcome and wish I had a > chance to respond sooner. Just to let you know my daughter has > assimilated well into school. > > I do have a question about the long-term effects of RSS. I recall > reading a post that addressed diseases or conditions that RSS adults > are more susceptible to than that general population but cannot find > it now. Does anyone have information regarding this? > > Mimi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 & Jodi, Finally found the post on long-term diseases is RSS adults that alluded me. It was a quote from Dr. H that " according to some well- done studies, they (RSS adults) do appear to be at a higher statistical insulin resistance, type 2 diabetes and vascular disease " . Mimi > > > > Hi All, > > > > > I want to thank this list for your warm welcome and wish I had a > > > chance to respond sooner. Just to let you know my daughter has > > > assimilated well into school. > > > > > I do have a question about the long-term effects of RSS. I recall > > > reading a post that addressed diseases or conditions that RSS adults > > > are more susceptible to than that general population but cannot find > > > it now. Does anyone have information regarding this? > > > > > Mimi > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 Hi Jodi, Do you know what size smaller babies Dr. H was referring to? Mimi mom to Zoe, 4 1/2, RSS > > > > > > > > > > Hi All, > > > > > > > > > > > I want to thank this list for your warm welcome and wish I had a > > > > > > > chance to respond sooner. Just to let you know my daughter has > > > > > > > assimilated well into school. > > > > > > > > > > > I do have a question about the long-term effects of RSS. I > >recall > > > > > > > reading a post that addressed diseases or conditions that RSS > >adults > > > > > > > are more susceptible to than that general population but cannot > >find > > > > > > > it now. Does anyone have information regarding this? > > > > > > > > > > > Mimi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 Hi everyone, Since Tyler's only 2.5 years-old, I haven't worried about all the fatty foods that we give him trying to put some extra pounds on him. Many experts recommend some fat for kids up to two years-old anyway. So, for those of you with older kids, I was wondering a couple of things: (1) Does a high-fat diet need to continue for several years? (2) Is it possible for kids eat a diet with more " healthy " calories? (3) Do the extra calories actually help? Sometimes I feel like all this effort trying to feed him doesn't do much good anyway (although the Periactin seems to be working). (4) Is there an age where their appetites suddenly improve? I was hoping by age 4 that he might make the connection between eating and growing and, therefore, want to eat. Thanks for any advice. I don't mind giving him lots of cookies, ice cream, salami, etc. now ... but I hadn't really considered how long this might go on for. (Tyler, 29 mos, 20.5 lbs, 32.5 " , and , 15 mos) > > > > & Jodi, > > > > Finally found the post on long-term diseases is RSS adults that > > alluded me. It was a quote from Dr. H that " according to some well- > > done studies, they (RSS adults) do appear to be at a higher > > statistical insulin resistance, type 2 diabetes and vascular > > disease " . > > > > Mimi Quote Link to comment Share on other sites More sharing options...
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