Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 Hi Joanne, I was fascinated by the summary of the UK conference. Is there any way we can get a full summary of the proceedings/talks? Thanks, Katy Mom to , 33 months, RSS, 34.5 " , 26'10z, perictin, zantac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 Joanne, and all: I had to leave the CGF conference at lunchtime - Barbara was not too good at home.OK now though. We saw Stanhope today at GOSH. He is having in next month for overnight blood sugar level test, and GH deficiency test. We shall review the results in February, and make a decision. He is writing to my GP, as apparently he has to OK the treatment (!); he is also requesting of our ortho that we have a shoe lift fitted. On the subject of assymetry, he suggested that it would be most unusual to see an increase of assymetry. except that which is proportionate to his height. This supports Sue Price's research presented at the convention, and after having ACCURATE measurements taken the assymetry is 1.5cm. Earlier measures suggested 2.5cm, almost doubled in 3yrs. Dr Stanhope was surprised that no bone age analysis had been undertaken, so we are to have his hands x-rayed. I did ask if bone age was important, and he said it was. Can you believe that I then forgot to ask why! He also recommended a thorough educational assessment at 6yrs of age, just to check all is OK. A couple of additions to your good notes on the conference: Dr Stanhope advises that there are no proven long-term adverse side effects of GH; there may be a slight increase in fluid pressure in the skull, causing a headache, but this will revert to normal as GH is stopped. Sue Price knows of no UK families, and only " a couple " world-wide, where rss exists in more than one child of same parentage. , you are probably one of those two!!! Joanne, please let me know when the next social is. Talk to ya soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 Great info. ! Just thought I'd add that there is a family that lives near me here in California that has two sons with RSS......remarkable! Thanks for your information. It is interesting to learn from others. Stacie Mommy to daughter - (6 yrs.) and son - (almost 3!) with RSS, assemetry & g-tube. Mahtani wrote: > > > Joanne, and all: > > I had to leave the CGF conference at lunchtime - Barbara was not too good at > home.OK now though. We saw Stanhope today at GOSH. He is having in > next month for overnight blood sugar level test, and GH deficiency test. We > shall review the results in February, and make a decision. He is writing to my > GP, as apparently he has to OK the treatment (!); he is also requesting of our > ortho that we have a shoe lift fitted. On the subject of assymetry, he suggested > that it would be most unusual to see an increase of assymetry. except that which > is proportionate to his height. This supports Sue Price's research presented at > the convention, and after having ACCURATE measurements taken the assymetry is > 1.5cm. Earlier measures suggested 2.5cm, almost doubled in 3yrs. Dr Stanhope was > surprised that no bone age analysis had been undertaken, so we are to have his > hands x-rayed. I did ask if bone age was important, and he said it was. Can you > believe that I then forgot to ask why! He also recommended a thorough > educational assessment at 6yrs of age, just to check all is OK. > > A couple of additions to your good notes on the conference: > > Dr Stanhope advises that there are no proven long-term adverse side effects of > GH; there may be a slight increase in fluid pressure in the skull, causing a > headache, but this will revert to normal as GH is stopped. > > Sue Price knows of no UK families, and only " a couple " world-wide, where rss > exists in more than one child of same parentage. , you are probably one of > those two!!! > > Joanne, please let me know when the next social is. Talk to ya soon. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 To Katy and others interested I'm glad that you found the notes interesting.I'm sorry that I coudn't be more detailed but I really only noted what would be of interest to the list and myself . I'm sure would agree that I don't think I left anything of great importance.Suzanne Lawrence is Stimmels counterpart in the CGF and she did take notes and will do a summery in the next CGF news letter.She is having problems with her e-mail at the moment but I will pass on any questions . Joanne Re: Fw: RSS UK Convention > > > Hi Joanne, > I was fascinated by the summary of the UK conference. Is there any way we can > get a full summary of the proceedings/talks? > > Thanks, > Katy > Mom to , 33 months, RSS, 34.5 " , 26'10z, perictin, zantac > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 To I wondered where you went !!!The next social is in april [i'll let you no when and where]It's good to hear that your appoint. went well with dr Stanhope.Hope you found the conference useful Joanne Re: Fw: RSS UK Convention > > > Joanne, and all: > > I had to leave the CGF conference at lunchtime - Barbara was not too good at > home.OK now though. We saw Stanhope today at GOSH. He is having in > next month for overnight blood sugar level test, and GH deficiency test. We > shall review the results in February, and make a decision. He is writing to my > GP, as apparently he has to OK the treatment (!); he is also requesting of our > ortho that we have a shoe lift fitted. On the subject of assymetry, he suggested > that it would be most unusual to see an increase of assymetry. except that which > is proportionate to his height. This supports Sue Price's research presented at > the convention, and after having ACCURATE measurements taken the assymetry is > 1.5cm. Earlier measures suggested 2.5cm, almost doubled in 3yrs. Dr Stanhope was > surprised that no bone age analysis had been undertaken, so we are to have his > hands x-rayed. I did ask if bone age was important, and he said it was. Can you > believe that I then forgot to ask why! He also recommended a thorough > educational assessment at 6yrs of age, just to check all is OK. > > A couple of additions to your good notes on the conference: > > Dr Stanhope advises that there are no proven long-term adverse side effects of > GH; there may be a slight increase in fluid pressure in the skull, causing a > headache, but this will revert to normal as GH is stopped. > > Sue Price knows of no UK families, and only " a couple " world-wide, where rss > exists in more than one child of same parentage. , you are probably one of > those two!!! > > Joanne, please let me know when the next social is. Talk to ya soon. > > > Quote Link to comment Share on other sites More sharing options...
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