Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Welcome You have come to the right place and it sounds like you are already on your way to getting your spinning wheels out of the mud by being proactive and trying to get to Dr. H. I live in Toronto, so I can't go and see her at all. But reading and corresponding on here has made all the difference in the world for me. Not all RSS kids have all the features/characteristics. My son, who is 13 years old today, does not have the curved 5th finger, he doesn't have cafe-au-lait spots, he's never had a feeding tube and in fact we are hard pressed for find asymmetry (I heard one doctor ONCE say one of his nipples is slightly lower than the other, but they had to really search for that!!) however when we saw Dr. H in Chicago there was no doubt in her mind that Adam is RSS. Magic is another fantastic resource and you have yourself already hooked up to that. So.....keep reading, keep asking questions, keep researching.....you have already done so much for !!! Take care Debby New to RSS???? > Hi, my 4 years old son has just been told that he falls > within the " spectrum of RSS " (whatever that means?!). After suffering > for 4 years with repeated dr visits and tests, were relieved at a name > for the pain, yet left with yet more questions. We're in the process > of getting insur approval and apt with Dr. H in New York (after reading > all of your wonderful success stories on MAGIC Foundation)and hoping > you more experienced moms can help lead the way a little for us! > is 4 yrs 4 months, 27lbs and 37 inches. He had a fundo and > G-tube put in in March of 2004, with still no improvement. He has many > of the characteristics of RSS yet not all of them, yet so many of your > stories describe him to a T ! > In any case I'm kind of alone in my efforts, researching and taking the > action to find help, yet unsure of my every move as well. I would just > really love to find someone who can take his history and give us hope > for his future, direction. THis spinning in circles is for the birds! > Any help or advice would be very appreciated! > -Siss@ > P.S. I'm in California...Doctors dont give much credence to RSS or > hypoglysemia here! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Well this is a good start and the best place for Information all the people on here not just us moms have an answer in one way or another. Good luck and keep posting. mom to Tori rss 5 yrs 9 months 30 lbs and 2 1/2 26 lbs non rss New to RSS???? Hi, my 4 years old son has just been told that he falls within the " spectrum of RSS " (whatever that means?!). After suffering for 4 years with repeated dr visits and tests, were relieved at a name for the pain, yet left with yet more questions. We're in the process of getting insur approval and apt with Dr. H in New York (after reading all of your wonderful success stories on MAGIC Foundation)and hoping you more experienced moms can help lead the way a little for us! is 4 yrs 4 months, 27lbs and 37 inches. He had a fundo and G-tube put in in March of 2004, with still no improvement. He has many of the characteristics of RSS yet not all of them, yet so many of your stories describe him to a T ! In any case I'm kind of alone in my efforts, researching and taking the action to find help, yet unsure of my every move as well. I would just really love to find someone who can take his history and give us hope for his future, direction. THis spinning in circles is for the birds! Any help or advice would be very appreciated! -Siss@ P.S. I'm in California...Doctors dont give much credence to RSS or hypoglysemia here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 hi melissa!! welcome to the group!! i also have a 4 1/2yr old son named christopher who is rss!! it is great that you will be taking him to nyc, because she is the best!! my christopher doesn have a g-tube, he is on periactin (an appitiete stimulant) and started ght in jan of this year. he is currently 30lbs and 38 1/2 " . we go to dr h for his 3 month folow up visit on nov 8th. we are in nj. feel free to email me anytime at jlcals2003@ yahoo.com (no space after @). i know there are other family's in CA but not sure what part. if you become a member of magic they can network you with other families that may be in your area. maybe they can recommened some doctors there to help you!! jodie c (one of 4 jodis on the list) (nicholas-7 1/2 nonrss, christopher-4 1/2 rss periactin 6.8, ght genotropin .6, assmentry (left side 1cm leg difference), ADHD & OCD possible, Johanthon-2 nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Debby, Thank you so much for your kind reply! How was it seeing Dr. H? What can I expect? I'm so glad to hear more about the " Spectrum " of RSS. Now that I have a name for our pain, and have a direction to go...I would hate to get there and her say, " Well I cant find anything wrong, all the tests came back negative...so...try this for a few months.... " Just like all the other doctors. I am trying to not expect too much yet my excitement is hard to control....as I'm sure many of you RSS moms have felt before! In any case, thanks again for your kind and thoughtful words of wisdom! -Siss@ Deb wrote: Welcome You have come to the right place and it sounds like you are already on your way to getting your spinning wheels out of the mud by being proactive and trying to get to Dr. H. I live in Toronto, so I can't go and see her at all. But reading and corresponding on here has made all the difference in the world for me. Not all RSS kids have all the features/characteristics. My son, who is 13 years old today, does not have the curved 5th finger, he doesn't have cafe-au-lait spots, he's never had a feeding tube and in fact we are hard pressed for find asymmetry (I heard one doctor ONCE say one of his nipples is slightly lower than the other, but they had to really search for that!!) however when we saw Dr. H in Chicago there was no doubt in her mind that Adam is RSS. Magic is another fantastic resource and you have yourself already hooked up to that. So.....keep reading, keep asking questions, keep researching.....you have already done so much for !!! Take care Debby New to RSS???? > Hi, my 4 years old son has just been told that he falls > within the " spectrum of RSS " (whatever that means?!). After suffering > for 4 years with repeated dr visits and tests, were relieved at a name > for the pain, yet left with yet more questions. We're in the process > of getting insur approval and apt with Dr. H in New York (after reading > all of your wonderful success stories on MAGIC Foundation)and hoping > you more experienced moms can help lead the way a little for us! > is 4 yrs 4 months, 27lbs and 37 inches. He had a fundo and > G-tube put in in March of 2004, with still no improvement. He has many > of the characteristics of RSS yet not all of them, yet so many of your > stories describe him to a T ! > In any case I'm kind of alone in my efforts, researching and taking the > action to find help, yet unsure of my every move as well. I would just > really love to find someone who can take his history and give us hope > for his future, direction. THis spinning in circles is for the birds! > Any help or advice would be very appreciated! > -Siss@ > P.S. I'm in California...Doctors dont give much credence to RSS or > hypoglysemia here! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Since the tests for RSS are not conclusive (eg. the one genetic test UPD7--only 10% of our kids test positive for that one) it's really a visual diagnosis after everything else has been eliminated. However Dr. H. has so many RSS patients that she is able to " tell " by looking. Many of our parents on this list have been told " SGA " (small for gestational age) because the RSS is just not there to Dr. H. but there is " something " . Either way, the treatment for SGA is the same as RSS (hence why Magic changed our division name to RSS/SGA). Whether you get the RSS diagnosis from her or the SGA, you will follow the same protocol and you will, of course, hang out here to learn as much as you can. But Dr. H. is one of those doctors that you just *know* once she has said something, it's most likely to be true. Her confidence is that high. She is rather abrupt with her patients (and their parents) though. So prepare yourself for that. She calls a spade a spade and doesn't pussy foot around with anyone's *self esteem* LOL I have never heard anyone coming away from Dr. H. having her say " we can't find anything wrong, so try this for a few months " . It seems to me, from the stories I have heard, she is more likely to say " yes it's RSS " or " no it's not RSS but I am pretty sure it's " XYZ " and this is exactly what we are going to do about it " . You don't feel like you have been brushed away and forgotten with her. I have had doctors tell me " there's nothing we can do, don't come back " many,many times. Anyway, have you booked a date to see her yet? Debby New to RSS???? > > > > Hi, my 4 years old son has just been told that he falls > > within the " spectrum of RSS " (whatever that means?!). After suffering > > for 4 years with repeated dr visits and tests, were relieved at a name > > for the pain, yet left with yet more questions. We're in the process > > of getting insur approval and apt with Dr. H in New York (after reading > > all of your wonderful success stories on MAGIC Foundation)and hoping > > you more experienced moms can help lead the way a little for us! > > is 4 yrs 4 months, 27lbs and 37 inches. He had a fundo and > > G-tube put in in March of 2004, with still no improvement. He has many > > of the characteristics of RSS yet not all of them, yet so many of your > > stories describe him to a T ! > > In any case I'm kind of alone in my efforts, researching and taking the > > action to find help, yet unsure of my every move as well. I would just > > really love to find someone who can take his history and give us hope > > for his future, direction. THis spinning in circles is for the birds! > > Any help or advice would be very appreciated! > > -Siss@ > > P.S. I'm in California...Doctors dont give much credence to RSS or > > hypoglysemia here! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 - Hi - I must have missed your first post. Welcome to the group. Great post Deb. - my son Ian has many characteristics but not all of the them either. He's definately RSS though - per Dr. H and our Geneticist. You have made it to a great site. You will learn much. Although I've had a diagnosis for Ian since he was 9 mos - it took almost a year before I was able to quit denying his diagnosis. Anyway, our best to you and your family. Please feel free to ask as many questions or chat as needed. Again - welcome! - H > > Welcome > > You have come to the right place and it sounds like you are already on > your > > way to getting your spinning wheels out of the mud by being proactive and > > trying to get to Dr. H. > > I live in Toronto, so I can't go and see her at all. But reading and > > corresponding on here has made all the difference in the world for me. > > Not all RSS kids have all the features/characteristics. My son, who is 13 > > years old today, does not have the curved 5th finger, he doesn't have > > cafe-au-lait spots, he's never had a feeding tube and in fact we are hard > > pressed for find asymmetry (I heard one doctor ONCE say one of his nipples > > is slightly lower than the other, but they had to really search for > that!!) > > however when we saw Dr. H in Chicago there was no doubt in her mind that > > Adam is RSS. > > Magic is another fantastic resource and you have yourself already hooked > up > > to that. So.....keep reading, keep asking questions, keep > > researching.....you have already done so much for !!! > > > > Take care > > Debby > > > > New to RSS???? > > > > > > > Hi, my 4 years old son has just been told that he falls > > > within the " spectrum of RSS " (whatever that means?!). After suffering > > > for 4 years with repeated dr visits and tests, were relieved at a name > > > for the pain, yet left with yet more questions. We're in the process > > > of getting insur approval and apt with Dr. H in New York (after reading > > > all of your wonderful success stories on MAGIC Foundation)and hoping > > > you more experienced moms can help lead the way a little for us! > > > is 4 yrs 4 months, 27lbs and 37 inches. He had a fundo and > > > G-tube put in in March of 2004, with still no improvement. He has many > > > of the characteristics of RSS yet not all of them, yet so many of your > > > stories describe him to a T ! > > > In any case I'm kind of alone in my efforts, researching and taking the > > > action to find help, yet unsure of my every move as well. I would just > > > really love to find someone who can take his history and give us hope > > > for his future, direction. THis spinning in circles is for the birds! > > > Any help or advice would be very appreciated! > > > -Siss@ > > > P.S. I'm in California...Doctors dont give much credence to RSS or > > > hypoglysemia here! > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Debby, Thank you for your response! All great info, I have to admit I'm a little more nervous about meeting her, as far as her bluntness that is, but still eager to get results! We dont yet have an apt....I'm emailing her pictures and info that Yadira requested last week, so hopfully, I'll her sometime real soon! _Siss@ Deb wrote: Since the tests for RSS are not conclusive (eg. the one genetic test UPD7--only 10% of our kids test positive for that one) it's really a visual diagnosis after everything else has been eliminated. However Dr. H. has so many RSS patients that she is able to " tell " by looking. Many of our parents on this list have been told " SGA " (small for gestational age) because the RSS is just not there to Dr. H. but there is " something " . Either way, the treatment for SGA is the same as RSS (hence why Magic changed our division name to RSS/SGA). Whether you get the RSS diagnosis from her or the SGA, you will follow the same protocol and you will, of course, hang out here to learn as much as you can. But Dr. H. is one of those doctors that you just *know* once she has said something, it's most likely to be true. Her confidence is that high. She is rather abrupt with her patients (and their parents) though. So prepare yourself for that. She calls a spade a spade and doesn't pussy foot around with anyone's *self esteem* LOL I have never heard anyone coming away from Dr. H. having her say " we can't find anything wrong, so try this for a few months " . It seems to me, from the stories I have heard, she is more likely to say " yes it's RSS " or " no it's not RSS but I am pretty sure it's " XYZ " and this is exactly what we are going to do about it " . You don't feel like you have been brushed away and forgotten with her. I have had doctors tell me " there's nothing we can do, don't come back " many,many times. Anyway, have you booked a date to see her yet? Debby New to RSS???? > > > > Hi, my 4 years old son has just been told that he falls > > within the " spectrum of RSS " (whatever that means?!). After suffering > > for 4 years with repeated dr visits and tests, were relieved at a name > > for the pain, yet left with yet more questions. We're in the process > > of getting insur approval and apt with Dr. H in New York (after reading > > all of your wonderful success stories on MAGIC Foundation)and hoping > > you more experienced moms can help lead the way a little for us! > > is 4 yrs 4 months, 27lbs and 37 inches. He had a fundo and > > G-tube put in in March of 2004, with still no improvement. He has many > > of the characteristics of RSS yet not all of them, yet so many of your > > stories describe him to a T ! > > In any case I'm kind of alone in my efforts, researching and taking the > > action to find help, yet unsure of my every move as well. I would just > > really love to find someone who can take his history and give us hope > > for his future, direction. THis spinning in circles is for the birds! > > Any help or advice would be very appreciated! > > -Siss@ > > P.S. I'm in California...Doctors dont give much credence to RSS or > > hypoglysemia here! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Welcome . Welcome to your new home and remember one thing. Here on this Listserve YOU ARE NEVER ALONE. My name is sheldon and i have a Granddaughter with RSS and she is 3 and her name is Laikyn. Her Parents & Zietz live in Bismarck North Dakota. You will find all the help you need here and if someone can't find it someone else will ok. So please do not feel alone and WELCOME HOME Sheldon Sime New to RSS???? Hi, my 4 years old son has just been told that he falls within the " spectrum of RSS " (whatever that means?!). After suffering for 4 years with repeated dr visits and tests, were relieved at a name for the pain, yet left with yet more questions. We're in the process of getting insur approval and apt with Dr. H in New York (after reading all of your wonderful success stories on MAGIC Foundation)and hoping you more experienced moms can help lead the way a little for us! is 4 yrs 4 months, 27lbs and 37 inches. He had a fundo and G-tube put in in March of 2004, with still no improvement. He has many of the characteristics of RSS yet not all of them, yet so many of your stories describe him to a T ! In any case I'm kind of alone in my efforts, researching and taking the action to find help, yet unsure of my every move as well. I would just really love to find someone who can take his history and give us hope for his future, direction. THis spinning in circles is for the birds! Any help or advice would be very appreciated! -Siss@ P.S. I'm in California...Doctors dont give much credence to RSS or hypoglysemia here! Quote Link to comment Share on other sites More sharing options...
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