Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 , I am so glad you wrote to us. That is why we are all here. Please contact the MAGIC foundation. They have alot of information about RSS and the related issues. They have a website (www.magic.org ?) and you can reach Stimmel, the RSS person directly at www.magicrss@... . They have a convention in Chicago in July with a wonderful doctor speaking there. Her name is Dr. Madeleine Harbison. She is my son's endo. in NYC and the most knowledgable person I have ever met. I can give you her email, too, if you would like. As for the early puberty, I have a son who is in the same position as your daughter. When he was 9 I started noticing some signs and he was finally tested at 10. The bloodwork was more stressful for me, however. I am not a doctor so I don't want to mislead you with what they are looking for, though. Just try to get through it and hold Tami's hand. As for the treatment itself, there are " many " of our older kids on Lupron. It is an intramuscular injection given by a doctor every 28 days. It is used to arrest puberty to give the child a chance to grow more and be given more time to mature emotionally for puberty. My son, however, is using a relatively new drug called Zoladex. It is inserted in his abdomen, just under the belly button, just under the skin. It is replace every three months or so, depending on his blood levels. We opted for this less common route after being reassured by Dr. Harbison that it is safe and has been used for years in South Africa. It is new to this country for this purpose, though. I hope I am helping you here. Please let me know what else I can answer for you. Best of luck!!! Jodi z4all@... Hi >From: STYCK5@... > >Hi, my name is and I have a daughter with RSS. This is my first time >writing to this support group (new member). We live in Illinois. My >daughter is 9 yrs old and weighs 42 lbs. Tami, my daughter, is scheduled to >be admitted into Wylers hospital in Chicago on July 6th. They are doing a >Clinical Research Center protocol on her. This protocol involves a sleep >test and a gonadotropin releasing hormone agonist test. This is very foreign >to me. Does anyone know what these tests are and what I could expect from >them? It is really scary letting Tami be " experimented " on. The reason for >these test is because her blood workup came back showing prepubertal >progression. They hope to be able to use Lupron to stop her from going into >premature puberty. Are any of your children using Lupron or have you ever >heard of it? If so what can I expect from this therapy? >I know these are all questions I should be asking her Dr. but he is very hard >to get a hold of. If anyone has any input please let me know. > >Thank you. > > >------------------------------------------------------------------------ >How many communities do you think join ONElist each week? >http://www.onelist.com >More than 5,000! Create yours now! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Dear , I have 11 year old identical twin girls that are also RSS. They started on Lupron in December when they were 10.5 years. We go to the doctor's office every month for our shot. Believe me 28 days has never gone by so fast!!!!! The doctor took a blood sample three months after they started taking the shots and I guess everything looks okay. I have noticed that the breast buds the girls were starting have actually regressed. Just wanted to let you know we have some experience with Lupron. Feel free to ask any questions you may have. Le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Le: Where are you from? Calif.? Stacie 's Mommy BobCatLe@... wrote: > > > ------------------------------------------------------------------------ > > Subject: Re: Hi > Date: Wed, 14 Jul 1999 13:56:05 EDT > From: BobCatLe@... > To: BobCatLe@... > > Ken, > Send me your home e-mail address. I wanted to respond to you but I deleted > all my messages because we are going on vacation TOMORROW!!! I am frantic > with all the things I have to do. Plus our 20 year old air > conditioner/compressor went kaput. So at the expense of mega bucks the man > is here installing a whole new ac and furnace unit. Just the thing you want > the day before you leave for vacation!!!! And boy has it been hot!!! Feels > just like the Midwest with the unusual humidity we have had. Probably just > preparing us for Ohio where we are going to visit my folks. Also if you can > put your fingers on it quickly I need to put at least the HGF on hold until I > get back. The amount of messages is unbelievable. I hadn't answered my > E-mail since the 9th, five days and I had over 300 messages. Needless to say > I just went through and deleted them all. I did respond to Etha O'Connor, > thank you for passing her along to me, You are really great at this. I wish > I could be as good!!!! I will sign on again later, probably one more time > before we get on the big silver bird....LE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Hi Stacie, Le was on that list I sent you a while back. She lives in Irvine. She just left for vacation. Ken M (now apparently everyone's social director. -- just kidding) ---------- >From: tclfam@... >To: RSS-Supportonelist >Subject: Re: Fwd: Hi >Date: Wed, Jul 14, 1999, 5:10 PM > > From: tclfam@... > > Le: > > Where are you from? Calif.? > > Stacie > 's Mommy > > BobCatLe@... wrote: > >> >> >> ------------------------------------------------------------------------ >> >> Subject: Re: Hi >> Date: Wed, 14 Jul 1999 13:56:05 EDT >> From: BobCatLe@... >> To: BobCatLe@... >> >> Ken, >> Send me your home e-mail address. I wanted to respond to you but I deleted >> all my messages because we are going on vacation TOMORROW!!! I am frantic >> with all the things I have to do. Plus our 20 year old air >> conditioner/compressor went kaput. So at the expense of mega bucks the man >> is here installing a whole new ac and furnace unit. Just the thing you want >> the day before you leave for vacation!!!! And boy has it been hot!!! Feels >> just like the Midwest with the unusual humidity we have had. Probably just >> preparing us for Ohio where we are going to visit my folks. Also if you can >> put your fingers on it quickly I need to put at least the HGF on hold until I >> get back. The amount of messages is unbelievable. I hadn't answered my >> E-mail since the 9th, five days and I had over 300 messages. Needless to say >> I just went through and deleted them all. I did respond to Etha O'Connor, >> thank you for passing her along to me, You are really great at this. I wish >> I could be as good!!!! I will sign on again later, probably one more time >> before we get on the big silver bird....LE > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1999 Report Share Posted August 10, 1999 Angie Rec'd your message. Are we using the onelist site? Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Angie-Got It. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Angie, Does this mean we are not using egroup? I will be on vacation til August 23...can I set 'no-mail' til then. Thank you, B. CT At 01:28 AM 8/11/1999 EDT, you wrote: >From: AngieCATW1@... > >we have all been switched to onelist. let me know if you receive this >Angie > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Good Morning Angie I did receive the message Have a great day Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Rene yes we are using onelist again. egroups had way too many mail problems,. I would like to keep egroup up and running (like a ghost ship) in case someone new checks in and we can use the other features that were good there Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Judee did you have a relaxing time? hope it was enjoyable Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 Angie I just got back from vacation. I see we are back on onelist. This is okay by me. Just want to receive digest. Thanks. Judee hi >From: AngieCATW1@... > >we have all been switched to onelist. let me know if you receive this >Angie > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 1999 Report Share Posted August 12, 1999 In a message dated 8/11/99 12:57:05 AM Central Daylight Time, AngieCATW1@... writes: << we have all been switched to onelist. let me know if you receive this Angie >> I got it, Angie. Was there a problem with the other list? Are we no longer using it? T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 1999 Report Share Posted August 13, 1999 Angie, I got it! Jo Re: hi >From: Okiebabes@... > >In a message dated 8/11/99 12:57:05 AM Central Daylight Time, >AngieCATW1@... writes: > ><< we have all been switched to onelist. let me know if you receive this > Angie > >> >I got it, Angie. Was there a problem with the other list? Are we no longer >using it? > T. > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 1999 Report Share Posted August 13, 1999 In a message dated 08/13/1999 3:20:36 AM Eastern Daylight Time, Okiebabes@... writes: << I got it, Angie. Was there a problem with the other list? Are we no longer using it? T. >> we are using onelist for the mail the other group was just too slow sometimes over24 hours to receive a post and several have complained that their posts never reached us. we will be keeping egroups for the data base and the chat room though Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 1999 Report Share Posted August 13, 1999 Hi Angie - I rec'd your notice Thanks L. --- AngieCATW1@... wrote: > From: AngieCATW1@... > > we have all been switched to onelist. let me know if > you receive this > Angie > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 8/17/1999 7:54:25 PM Pacific Daylight Time, Lu1953@... writes: << I am so behind in reading my mail, I don't know whether to just delete it or try and catch up ! LOL Have you ever been in that situation, what did u do? >> Set your mail to digest till you can catch up. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 8/17/99 11:16:16 PM Central Daylight Time, Rlr1999@... writes: << Set your mail to digest till you can catch up. Roy >> Sorry I missed your anniversary, it was your anniversary wasn't it? LOL well I hope it was a good one. How do I set my mail to digest? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 In a message dated 8/17/1999 10:44:35 PM Pacific Daylight Time, Lu1953@... writes: << How do I set my mail to digest? >> Go to onelist.com Sign in, then go to your preferences and set them to digest. ROy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 In a message dated 8/18/99 8:49:42 AM Central Daylight Time, Rlr1999@... writes: << << How do I set my mail to digest? >> Go to onelist.com Sign in, then go to your preferences and set them to digest. >> tHANK YOU : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 1999 Report Share Posted August 19, 1999 In a message dated 8/19/99 11:57:36 PM Central Daylight Time, Okiebabes@... writes: << Lu, That's the situation I'm in now. The number of emails is overwhelming..... yet, I don't want to miss out on anything. LOL I'm certainly no help, am I? T. >> LOL Hi , Well I don't make it any easier because I want to answer everyone that writes in... lol Its because I have a big mouth... and a big heart that loves people.... Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 1999 Report Share Posted August 19, 1999 In a message dated 8/20/99 12:22:03 AM Central Daylight Time, Lu1953@... writes: << and a big heart >> Yes, Lu, you definitely have a big heart. And we love you for it. T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 1999 Report Share Posted August 19, 1999 awe... T. Thanks ! You are so sweet ! You made my night ! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 1999 Report Share Posted August 20, 1999 In a message dated 8/19/1999 10:01:03 PM Pacific Daylight Time, Okiebabes@... writes: << However, some of them had to be downloaded (I didn't like that), AND you don't get the attachments with the digests. Am I right here, or was I doing something wrong? >> You have everything right there . I wish there was some way to set it so it didnt create the files which have to be downloaded. They are a pain. I also like digest when I get behind. It speeds up reading the mail. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 In a message dated 9/28/99 3:18:37 PM Central Daylight Time, HAIGJIM@... writes: << My name is Jim, and I just wanted to say hello and get my name on the post before LU forgets who I am. >> Hi Jim...I remember you lol How are you doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Hi Lu, I'm doing very well,thank you. I just had to harass someone,and you were up! is too busy getting ready to kick Roy's ass. Angie is cheerleader for . And I would really like to have a Bud with Roy. My short term memory came back for a few min.,but it's gone now. Take Care Jim Quote Link to comment Share on other sites More sharing options...
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