Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 Ilene, I believe that it's been proven that RSS kids are not GHD, but described as Growth Hormone Insufficient instead. This means that " normal " amounts of GH will not allow for growth, and that they must sustain higher levels to achieve this. If you are a member of MAGIC, I believe that they have articles that substantiate this line of thought. Hope this helps! Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm), G-Tube) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I think I remember reading that most RSS kids do not test for GHD, but some do. I am a member of Magic, and hope that they respond to me with the specific articles that will help us as we go " to battle " on behalf of Noam. Thanks for responding. Ilene > Ilene, > > I believe that it's been proven that RSS kids are not GHD, but > described as > Growth Hormone Insufficient instead. This means that " normal " amounts > of GH > will not allow for growth, and that they must sustain higher levels to > achieve this. > > If you are a member of MAGIC, I believe that they have articles that > substantiate this line of thought. > > Hope this helps! > Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm), > G-Tube) > > > <image.tiff> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 Hi Ilene.... I'm going to send you privately the complete database of articles in the MAGIC database... did a great job summarazing the articles and you can see the ones that deal with GHT for RSS kids!!!! And, indeed, MOST RSS kids do NOT show GH deficiencies. I spent 3 months with my insurance company " teaching " them this subtle fact!!! RSS is is a very unique syndrome, indeed. Katy RSS CoDivision Consultant, MAGIC > > > Ilene, > > > > I believe that it's been proven that RSS kids are not GHD, but > > described as > > Growth Hormone Insufficient instead. This means that " normal " amounts > > of GH > > will not allow for growth, and that they must sustain higher levels to > > achieve this. > > > > If you are a member of MAGIC, I believe that they have articles that > > substantiate this line of thought. > > > > Hope this helps! > > Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm), > > G-Tube) > > > > > > > <image.tiff> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 wrong link trying again this explains how SD relates to growth percentile http://www.fda.gov/bbs/topics/ANSWERS/2003/ANS01242.html - In RSS-Support , " lipi_imon " <lipi_imon@y...> wrote: > > I found the FDA approval notice for GH for short stature children > hope the link shows up ok > http://www.aace.com/clin/guidelines/hgh.pdf > > > -- In RSS-Support , " lipi_imon " <lipi_imon@y...> wrote: > > > > Well I am not very good at statistics, standard devitation from the > > mean takes into account the variability from the mean (I typed norm > > before). I read somewhere for the CDC growth curves it roughly > euates > > to 1.3% *=(below the 3% line, but where 1.3% woould lie I am not > > sure). I cannot quote where I got this info, so may be others can > > provide more credible sources. > > Sabina > > > > > > > > > > > > > > > > I just returned from the endo and they told me that Isaac > will > > > > > qualify because he is SGA and we won't have to do the stim > test > > > > > (which is 11 blood draws over 4 hours..YUCK!). I was told > that > > > SGA > > > > > is an " automatic " qualification. Has anyone else been told > > this? > > > I > > > > > am sure there are gray areas and coming from an insurance > > > > background > > > > > I know that MANY areas are considered gray!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 hi ilene, you can e-mail prof.zadik at www.gdila.co.il. he has a lot of experiance with gh and rss-in israel! tikva > >Reply-To: RSS-Support >To: RSS-Support >Subject: Re: - Ilene >Date: Tue, 01 Feb 2005 14:31:55 -0000 > > >Hi Ilene.... >I'm going to send you privately the complete database of articles in >the MAGIC database... did a great job summarazing the >articles and you can see the ones that deal with GHT for RSS kids!!!! > >And, indeed, MOST RSS kids do NOT show GH deficiencies. I spent 3 >months with my insurance company " teaching " them this subtle fact!!! >RSS is is a very unique syndrome, indeed. > >Katy >RSS CoDivision Consultant, MAGIC > > > > > > > Ilene, > > > > > > I believe that it's been proven that RSS kids are not GHD, but > > > described as > > > Growth Hormone Insufficient instead. This means that " normal " >amounts > > > of GH > > > will not allow for growth, and that they must sustain higher >levels to > > > achieve this. > > > > > > If you are a member of MAGIC, I believe that they have articles >that > > > substantiate this line of thought. > > > > > > Hope this helps! > > > Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " >(83.3cm), > > > G-Tube) > > > > > > > > > > > <image.tiff> > > > > > > Quote Link to comment Share on other sites More sharing options...
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