Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 > Hi everyone, > > A couple of weeks ago I set up a poll to ask if we should have a roll > call. The majority of voters voted yes, we should. > > So, please report in with: > > 1). First Name, Last Initial -- we have a lot of Debby's and Jodi's > on the list. > 2). Where you live, City and State only. > 3). How many children you have & how many with RSS. Please include > ages, heights and weight especially for the children with RSS. > 4). Birth height, weight, premature and by how much. > 5). Medication(s), feeding tube and how long they have been on it. > 6). Doctor or hospital treating your RSS child(ren). This is really > useful for new members. > > Optional -- actually the whole thing is optional > 7). when diagnosed. > 8). Anything else you want to add. > > I'll go first. > > 1).My name is Ken M. -- not too many of those on the list. > > 2). We live in Hollis, NH about 50 mile north west of Boston. > > 3). We have one child, and he has RSS. He will be 7 on April > 30. He is 43 " tall and weighs 35 lbs. > > 4). He was born 1 month premature, delivered by C section. He was > 4lbs 5 oz and 17 " long at birth. He was fed by a g-tube for 3 weeks > but then ate on his own and came home when he was a month old. > > 5). He is on growth hormone and has been since July 2002. We just > stopped giving him periactin but it looks like we will need to start > that up again. He does not need a feeding tube but we are always just > one step away from that. > > 6). is being treated for his RSS by Dr. Alyne Ricker at Joslin > Diabettes Clinc, which is just across the street from Children's > Hospital in Boston. > > 7). He was diagnosed when he was about a year old by Dr. Ricker. It > was confirmed by a geneticist, Dr. , also of Childrens' hospital. > > I hope this covers everything. > > Ken M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Not quite sure what happened on that last post, here is our information. 1. and Kim S. 2. Blaine, Minnesota (Suburb of Twin Cities) 3. 9, 6, Grant (RSS) 3 born 11-10-00 4. 19 " , 6 lbs, born on his due date 5. Prevacid since 1 yr, periactin on and off from 2.5 yr to present, NJ from 1.5-2yr, g-tube 2yr to present. Nissen Fundo at 2yr. 6. Dr Harbison every 3 months, Dr Sheridan local Endo, Dr. Ferenci, local GI 7. Grant was diagnosed at 2.5 yr, we suspected RSS at about 2 yr old. Mom knew something was not right when he was born. 8. Grant is a non SGA/IUGR RSS variant according to Dr H. Whoever is compiling the roll call information could you please send me a copy scobb001@ umn.edu (no space) Quote Link to comment Share on other sites More sharing options...
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