Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Hi Ann, " A rose by any other name still smells as sweet " - Bill Shakespeare (I think) " If it looks like poop and smells like poop, it probably is poop " - not sure who said it first but it was a classic Cheech and Chong routine. We are talking about genetics!! The blue print of human creation!! I don't see how any one person can have a definitive answer. Maybe RSS is not the exact label for a specific person with certain characteristics but creation is based on a blue print which allows countless possibilities. I mean if we get that specific, then we would have a different label for each person. Not just RSS, but RSS , well Blair is a little different then that must RSS Blair, RSS , RSS Abigail etc. Maybe there is a different name for what Blair has but no one has put a name to it! If the characteristics are there, and the fundamental issues a the same and the basic course of treatment works call it RSS until some other label fits a little better. I don't know if I made any sense and I'm not proposing that the guidelines for what is RSS or not RSS be 'loose' but they do need to open to the miracle and complexity of human creation. In short Ann, if you see the doctors in ton and what they say and the course of treatment is best for Blair accept it. If not go see Dr. H maybe she can lead you in the right direction. I guess all a really needed to do was right those last two lines but this has been something I've been thinking about for a while. To my friends, Peace and Prayers Mark dad to 4 (5 in April), G-tube Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Dear Danna,Thanks for your input.You previously gave me the name and address of Dr.s and I printed it out in case I need it in the future.I would be interested to hear what MD's Dr.H would suggest in the south. Grandma Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Dear Mark, I think you said it pretty well!It helps to see this in the overall scheme of things,huh?I probably am a bit compulsive about needing a NAME for it.But,after all I am also a nurse.Thank you for helping to put it all in perspective.Your remarks are appreciated. Grandma Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Thank you , I think that is the right approach tool Grandma Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Hi, Grandma Ann It sounds like you have a game plan. was DXed by the Kathy s, Geneticist, T.C. Children's Hospital. I feel secure in her DX, although I question the fact that she hasn't referred a Endocrinologist for . I've been doing some web searches for one closer to home. I've been thinking about e-mailing Dr. H to see if she knows of any medical groups in the south that are currently researching RSS. It couldn't hurt, but so far it's just a thought. Danna Question for everyone > From: AKnight322@... > > Hey everybody! > Do you ever feel like you have so many thoughts,questions,conjectures > spinning around in your head that you don't know which end is up?I guess I'm > especially thinking of those of us who don't have our kids diagnosed > yet.Anyway,I'd like some input from the entire list.Is the general consensus > that Dr.H is definitely the " expert " to see to either diagnose or rule out > RSS?But I have also gotten the impression from time to time that the kids > have to have practically ALL of the RSS characteristics to be diagnosed with > it by her.Am I incorrect?Blair has an appointment in March to see her Endo in > ton and then in June to see the geneticist again.I've been thinking > that we will wait and see what they have to say,and if not satisfied seek a > second opinion from Dr.H(if affordable).Does this sound wise or should I go > ahead and make contact and schedule an appointment just in case we need > it?I'm hoping I can get any medical records that will be needed without too > much trouble.You see Blair's Mom and Dad are not together.Her Mom has > custody.Blair is my son's child .So,I will definitely have to have her > cooperation with all of this.We have talked about it and about the > possibility of a trip to New York,but she is sometimes slow to follow up on > things.By the way,we do have a good relationship with the Mom,and she knows I > am only working for the best outcome for Blair.Blair's parents are young and > they don't always know the questions to ask or how to go about asking > them.Thanks. > Grandma Ann > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/0/_/229381/_/952824010/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Ann, I would start with your local geneticist, then if you don't get any satisfaction contact Dr H. I have been fortunate so far with my local team, maybe you will be too! - Mom of (13mons) & (3yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Hi, Mark You put that very well. You truly have a way with words. That reminds me of a cousin I have that has a genetic disorder inherited from his father. No relation to RSS but, it puts in prospective the genetic complexities. They and one other family are the only one that have it. The other family is a black family out west and his family, white in the south. Go figure. I've tried to find any info on the Internet that I can and found nothing. I know your all thinking you could have gone on forever and never heard any of this, but it's just another view on the whole genetic issue. Danna Re: Question for everyone > From: mdppdm@... > > Hi Ann, > > " A rose by any other name still smells as sweet " - Bill Shakespeare (I > think) > > " If it looks like poop and smells like poop, it probably is poop " - not > sure who said it first but it was a classic Cheech and Chong routine. > > We are talking about genetics!! The blue print of human creation!! I don't > see how any one person can have a definitive answer. Maybe RSS is not the > exact label for a specific person with certain characteristics but creation > is based on a blue print which allows countless possibilities. I mean if we > get that specific, then we would have a different label for each person. Not > just RSS, but RSS , well Blair is a little different then that must > RSS Blair, RSS , RSS Abigail etc. Maybe there is a different name for > what Blair has but no one has put a name to it! If the characteristics are > there, and the fundamental issues a the same and the basic course of > treatment works call it RSS until some other label fits a little better. > > I don't know if I made any sense and I'm not proposing that the > guidelines for what is RSS or not RSS be 'loose' but they do need to open to > the miracle and complexity of human creation. In short Ann, if you see the > doctors in ton and what they say and the course of treatment is best > for Blair accept it. If not go see Dr. H maybe she can lead you in the right > direction. I guess all a really needed to do was right those last two lines > but this has been something I've been thinking about for a while. > > To my friends, > Peace and Prayers > Mark dad to 4 (5 in April), G-tube > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/0/_/229381/_/952827534/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Dear Ann, Having a name helps!We've been talking a lot about how to respond to be people when they comment about " How little " a child is. It was very difficult to have a good attitude before had a diagnose.It was very easy to be defensive when the only label we had was 'failure to thrive'.It easier to be confident and positive when you have an aswer and are going a course of treatment you have confidence in. To my friends, Peace and Prayers Mark dad to 4 ( 5 in April), G-tube Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Danna - Just an F.Y.I - When I talked to Magic, they were able to look up Jes' hospital, and/or others in my area and they seemed to have Dr.'s highlighted. I think they were the ones most familiar with RSS. I was given an endo's name who works out of the hospital where all of Jes' care is. Just a thought, you may want to give that a try - 1-800-3magic3. , Mom to , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Mark, Very well put. I have thought similar things (not quite in those words, of course ) But when Jes geneticist says she doesn't have RSS only because of her head circ., I had to ask him, well do you think that we should see an endo anyway, isn't there some sort of action we could take to help her grow regardless of her diagnosis, or lack there-of? His reply was, " well, I wouldn't suggest it, but I could write a refferal if you want. " - Do I have good reason to be frustrated, angry, fed up with this Dr.? Or am I just mad because he didn't give me the answer I wanted? (I think I have good reason to not go back to him in 9mos like he suggested - what is he going to tell me then?nothing!) Any input would help my conscience. Thanks, , mom to Jes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 , Question - Do you feel your doctor is helping you get an answer at all? 9 months between appointments would be a little long for me to wait if I didn't know what was going on. It might be frustrating not getting the answer you wanted, but to have no answer at all is beyond frustrating. I would be frustrated if I were you! To my friends, Peace and Prayers Mark dad to P. 4 (5 in April), G-tube Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Mark, Thanks again. As usual you know just the right words to say.(This must be your gift of ministering to others.) Grandma Ann Quote Link to comment Share on other sites More sharing options...
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