Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 I am looking for doctor in the Boston area that specializes in Russel -Silver syndrome. My daughter has been seen by genetics and said this is what she has however her primary isn't convinced. She has many of the characteristics. She was 5lbs and birth feed by suringe, reflux that would turn heads, she has asysmetic her right side is bigger than left side from neck down. She is loving and beautiful.She has never been on a chart except her own and fell off that but now back on it. She had her tonsils out which helped her gain 2lbs but now we are back to not eating much. She is 33inches and 24lbs. I want to see an endocrinologist around us. There are so many but when i call they say we are not familar with russel silver but we can see her. i don't want to drag her from doctor to doctor unless need be I would rather get a recomendation from some one who has been there. We called New York and will eventually go there but waant things check out now because what I read is the quicker we help her the better off in the long run. If any one has suggetions please let us know. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 Hi, We live in southern NH and we take our son to see Dr. Alyne Ricker at Joslin Clinic. She used to be at Children's hospital in Boston. She is great with kids and diagnosed 's RSS in the blink of an eye even though she had only seen one other RSS child nearly 4 years before. She can be contacted at: http://www.joslin.harvard.edu/jboston/providers_boston.shtml#pediatric Dr. Alyne RickerJoslin Diabete Clinic Department Telephone Number: Also, others in the Boston area see Dr. Ingrid Holm at Boston Children's hospital. We have not see her but have been told she is excellent. She can be contacted at: Children's Hospital Boston Divisions of Endocrinology and Genetics 300 Longwood Avenue, LO-624 Boston, MA 02115 Phone: or Fax: or E-mail: ingrid.holm@... Website: www.childrenshospital.org Last, the endo dept at Mass general is excellent. Some in this area saw Dr. Crawford. He was one of Dr. Harbinson instructors. I think he is retired now. I will try and find the name of another doctor at Mass General who has an excellent reputation with kids and knows a lot about RSS. I just can't think of the name at the moment. I hope this helps. Ken M > I am looking for doctor in the Boston area that specializes in > Russel -Silver syndrome. My daughter has been seen by genetics and > said this is what she has however her primary isn't convinced. She > has many of the characteristics. She was 5lbs and birth feed by > suringe, reflux that would turn heads, she has asysmetic her right > side is bigger than left side from neck down. She is loving and > beautiful.She has never been on a chart except her own and fell off > that but now back on it. She had her tonsils out which helped her > gain 2lbs but now we are back to not eating much. She is 33inches and > 24lbs. I want to see an endocrinologist around us. There are so many > but when i call they say we are not familar with russel silver but we > can see her. i don't want to drag her from doctor to doctor unless > need be I would rather get a recomendation from some one who has > been there. We called New York and will eventually go there but waant > things check out now because what I read is the quicker we help her > the better off in the long run. If any one has suggetions please let > us know. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 hi and welcome to the group!! (you didnt state your name) i am not form that area but there are people on this list that are and hopefully will be able to help!! just wanted to welcome you to this great support group!! how old is she? feel free to email me at jlcals2003@ yahoo.com (no spave after @) good luck!! jodie c. (nicholas-6 nonrss, christopher-3 1/2 rss 25lbs 1oz 34 3/4 " periactin, ght genotropin (on hold 3m), ADHD (possible), assmentry (left side 1cm), johnathon-1yr nonrss) > I am looking for doctor in the Boston area that specializes in > Russel -Silver syndrome. My daughter has been seen by genetics and > said this is what she has however her primary isn't convinced. She > has many of the characteristics. She was 5lbs and birth feed by > suringe, reflux that would turn heads, she has asysmetic her right > side is bigger than left side from neck down. She is loving and > beautiful.She has never been on a chart except her own and fell off > that but now back on it. She had her tonsils out which helped her > gain 2lbs but now we are back to not eating much. She is 33inches and > 24lbs. I want to see an endocrinologist around us. There are so many > but when i call they say we are not familar with russel silver but we > can see her. i don't want to drag her from doctor to doctor unless > need be I would rather get a recomendation from some one who has > been there. We called New York and will eventually go there but waant > things check out now because what I read is the quicker we help her > the better off in the long run. If any one has suggetions please let > us know. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 I just wanted to echo what Jodie said. I am another Jodi, and I have a 26 month old little boy named . He weighs around 18 1/2 lbs. right now. I want to welcome you to our group, and I hope that some of the responses so far have helped you out. It sounds like a couple people have given you quite a few options. I am from Ohio, so I can't help you out with doctors in Boston, but I can welcome you tou our group! LOL! ) How old is na? DO you have any pictures of her you would care to post on our photos section? We would love to see her. Take care, Jodi R. 's mom > > I am looking for doctor in the Boston area that specializes in > > Russel -Silver syndrome. My daughter has been seen by genetics > and > > said this is what she has however her primary isn't convinced. She > > has many of the characteristics. She was 5lbs and birth feed by > > suringe, reflux that would turn heads, she has asysmetic her right > > side is bigger than left side from neck down. She is loving and > > beautiful.She has never been on a chart except her own and fell > off > > that but now back on it. She had her tonsils out which helped her > > gain 2lbs but now we are back to not eating much. She is 33inches > and > > 24lbs. I want to see an endocrinologist around us. There are so > many > > but when i call they say we are not familar with russel silver but > we > > can see her. i don't want to drag her from doctor to doctor unless > > need be I would rather get a recomendation from some one who has > > been there. We called New York and will eventually go there but > waant > > things check out now because what I read is the quicker we help > her > > the better off in the long run. If any one has suggetions please > let > > us know. Thanks Quote Link to comment Share on other sites More sharing options...
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