Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Annette, My name is Donna and I have 2 daughters with RSS. is 12 and is 3. They were both dx this summer as having RSS. Both started GH injections in August and we have seen a definite increase in their growth. is approx. 4' 7 " and weighs 62 - 63 lbs. Could be more due to holiday eating. She also takes periactin to help with her appetite. Other than needing some orthodontic work and taking GH she has experienced no other problems from the RSS. on the other hand is well lets just say " " ! She had her first dental appt. last week and the dentist is already telling me to get her to an orthodontist by age 6. She suffers from severe food allergies (peanuts, eggs, and soy) along with asthma, eczema and immune problems. The GH has made a difference in her health. This list has been very helpful for me to understand RSS and how to handle problems that have arisen with my children. Hopefully, you will find beneficial information and support also. Donna almay95608 wrote: Hi! My name is Annette, mom to Allie, 9.3 years old and Evan 12 years old. I haven't been involved in a RSS support group since it moved to this site back in early 1999. The only name I recognize is Ken M. Hi Ken! Allie was diagnosed with RSS by her endo when she was 6 years old, although the geneticist never agreed (she never came up with anything else, though). Allie weighs 40 lbs and is 45 inches tall. She is currently not taking any medications. Her doctor is still not too eager about doing anything for her. She has had numerous ear problems, resulting in 50% hearing loss in one ear and 20% in the other. She also has terrible teeth, we just recently started all of the orthodontia work. I've gone back and read quite a few of the postings and it appears that the majority of parents in this group have very young RSS children. Are there some parents in this group who have older RSS kids? Does anybody know of a good doctor in Northern California? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Annette - if you are interested, you can contact me off line. I am the volunteer director for the RSS division of MAGIC, and they have a database of doctors and families from northern california. I live in Southern California. Where in No Calif do you live? I was born in Orinda, lived there for 6 years, then lived in Lodi for another 6 years, before moving to Chico, where my family still resides. Salem > Hi! My name is Annette, mom to Allie, 9.3 years old and Evan 12 > years old. I haven't been involved in a RSS support group since it > moved to this site back in early 1999. The only name I recognize is > Ken M. Hi Ken! Allie was diagnosed with RSS by her endo when she > was 6 years old, although the geneticist never agreed (she never came > up with anything else, though). Allie weighs 40 lbs and is 45 inches > tall. She is currently not taking any medications. Her doctor is > still not too eager about doing anything for her. She has had > numerous ear problems, resulting in 50% hearing loss in one ear and > 20% in the other. She also has terrible teeth, we just recently > started all of the orthodontia work. > > I've gone back and read quite a few of the postings and it appears > that the majority of parents in this group have very young RSS > children. Are there some parents in this group who have older RSS > kids? Does anybody know of a good doctor in Northern California? Quote Link to comment Share on other sites More sharing options...
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