Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Ken, thanks for sharing that info. You always seem to know where to go to get info! I really appreciate it and I'm sure everyone else does as well. Kathleen (Mom to Abby--15 mos, 12 lbs. 12 oz, 25 in., not officially diagnosed RSS yet) Silver Syndrome > > > > >Q: My son (2.5 yrs) has Silver Syndrome. Is there any recent >research >which shows that RSS kids benefit from growth hormone. > > > >Dr. Pauker answers: > >You probably already know a great deal about RRS, and since there isn't a >clear >answer I could give over the internet, I'll give you some information and >resources which might help in your discussions and decision-making. > >There is controversy and mixed experience in regard to the use of growth >hormone >in RRS. For an individual patient, clarification of the diagnosis, age, and >degree of presentation of findings must be taken into account. The opinions >of >the Pediatrician, Pediatric Endocrinologist, and Clinical Geneticist >involved in >the care of the child will be most valuable. > >Published articles suggesting improvement and prevention of further >malformations include: (you might find lay editions, or review them with >your >physicians): > >Horm Res. 51(1):47-9,1999 and 49 Suppl 2:37-40, 1998, and 50(1):22-7,1998 >(Hormone Research) >J Pediatr. 128(5 Pt 2):S22-7, 1996 May. (Journal of Pediatrics) >The National Organization of Rare Diseases offers support for parents. >------------------------------------------------------------ > >CyberNurse adds the following information: > >The Harvard Countway Medical library in the Longwood medical area in Boston >has >these journals. They will issue a guest pass for the day, at the rate of >$25. > >You may also be interested in doing a journal article review yourself, using >MEDLINE. An easy way to get there is to first log on to: >www.healthgate.com, >and then choose MEDLINE. Within MEDLINE, you enter keywords, and it will >take >you to journal articles of interest. > >I am also attaching a list of support groups/foundations, with their >websites >and phone numbers that you may find as a useful reference. -Cybernurse > >MAGIC Foundation for Children's Growth >1327 North Harlem Avenue >Oak Park, IL 60302 >Tel: >Tel: >Fax: >Email: mary@... >Internet: http://www.magicfoundation.org > >Human Growth Foundation >997 Glen Cove Road >Glen Head, NY 11545 >Tel: >Tel: >Fax: >Email: hgfound@... >Internet: http://www.genetic.org/hgf/ > >Short Stature Foundation >4521 Campus Drive >#310 >Irvine, CA 92715 >Tel: >Tel: >Fax: > >Restricted Growth Association >P.O. Box 8 >Countesthorpe >Leicestershire, Intl LE8 5ZS >United Kingdom >Tel: 44 116 2478913 >Fax: 44 116 2478913 > >NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases >9000 Rockville Pike >Bethesda, MD 20892 >Tel: >Fax: >Internet: http://www.nih.gov/niams/ > >The Arc (a national organization on mental retardation) >500 East Border Street >Suite 300 >Arlington, TX 76010 >Tel: >Tel: >Fax: >TDD: >Email: thearc@... >Internet: http://thearc.org/ > >Little People of America, Inc. >P.O. Box 745 >Lubbock, TX 79408 >Tel: >Tel: >Fax: >Email: lpadatabase@... >Internet: http://www.lpaonline.org > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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