Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 CL, My first piece of advice is to call the MAGIC foundation at 3MAGIC3 or go to their website at www.magicfoudation.org <http://www.magicfoudation.org/> . They have a ton of information available to you and your doctors. Pamphlets, articles even videos of presentation from their annual convention. Joining gains you access to even more great info on their website as well as networking and their massive research article library. My second piece of advice is to stick around! This is a great bunch and they are full of information and best of all support! Dayna, Mom to Alyssa RSS 4ys _____ From: RSS-Support [mailto:RSS-Support ] On Behalf Of re_1wiily Sent: Tuesday, January 24, 2006 6:24 PM To: RSS-Support Subject: Son's Silver We have a four year old son who has russell silver and have encountered a great deal of difficulty with our local health agencies who do not seem to know about or understand the nature of his 'issues'. I'm often at a loss as to what to do or where to turn so I thought I'd try this venue. Any advise? CL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hi CL. Welcome to the group! I hope you can stay with us and continue to learn more about RSS and how we all are trying to deal with our precious children's issues. Do you feel comfortable sharing a little more information with us about your son? I have a little boy that will be 4 in May. So, I guess our kids are close to the same age. How much does he weigh and how tall is he? Where do you all live? There is a doctor that specializes in RSS that is in New York City. As a matter of fact, and his grandma and I just went yesterday for an appointment. I posted this huge long post a while ago of you are interested in reading about it. But, the doctors name is Dr. Madeleine Harbison. She is great for us. She has really brought full circle since seeing her two years ago in October when he was severely malnourished, even with a feeding tube. Now, he is too chunky! But, RSS is such a hard row to hoe as it is such a fine line as to the care of these children. So, it is good that you have found this group and we all try to help as much as we can. We may not all have information or advice, but we try! ;o) I would love to hear more about your son if you are interested in sharing. We would be able to help you out with more information. I know where you are coming from about the local doctors though. And, I sort of touched on that in my long post. But, doesn't get the care he needs, at this point, locally. So, we go to see Dr. H. right now. And, will continue as long as I feel we need to. I plan to see her at least twice a year, but right now the conditions are such that I have to go every three months. I just wanted to welcome you to the group and let you know that we would all be interested in hearing more about your son and where you are from. Have you checked the MAGCI Foundation yet? If not, their website is www.magic foundation.org. Do not put in the space though. We just have to do that here otherwise it wouldn't show the whole address. Type it as all one word. Anyway, MAGIC is wonderful and they have a library full of articles on RSS and things that go along with it. GH and things like that. Also, they hold a convention each year in Chicago in July that many of us attend. IT is great because there are speakers and Dr. H. makes time for short consultations and also we all get to meet each other and the kids see other kids dealing with the same growth issues. Tubes or not! It is so fun and informative. Hope you can check into it. Man, I am the queen of long posts today. Forgive me everyone! LOL! Jodi R. 's mom p.s. you can check out his pictures under R. > > We have a four year old son who has russell silver and have > encountered a great deal of difficulty with our local health agencies > who do not seem to know about or understand the nature of > his 'issues'. I'm often at a loss as to what to do or where to turn > so I thought I'd try this venue. Any advise? > CL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 HI CL Tell us a bit about yourself, where you live etc. Depending on where you are, our " resident " experts can advise you accordingly!! Have you found Magic Foundation yet? It is a foundation for a variety of growth disorders, including RSS, it's at www.magicfoundation.org Once you are a member (35 dollars a year) it accesses you to a web of information (articles on treatment plans etc). that you can request and then send to your own doctor(s) as well as a yearly convention in Chicago. Glad you found us! Debby Son's Silver We have a four year old son who has russell silver and have encountered a great deal of difficulty with our local health agencies who do not seem to know about or understand the nature of his 'issues'. I'm often at a loss as to what to do or where to turn so I thought I'd try this venue. Any advise? CL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Dayna, cannot tell you how happy I am that you have responded to my posting. I've already been in touch with the magic foundation and they've been very informative. Unfortunately for us in our area the doctors seem dismissive of The foundation and any information I try to provide them with. It can be extremly frustrating. As far as sticking around goes - I think I will. Just being able to read some of the postings and looking through this site has offered me support and reassurances that have been a long time coming. Thnx! Charlene, Mom to , 4 years old (RSS) > > CL, > > > > My first piece of advice is to call the MAGIC foundation at 3MAGIC3 or go to > their website at www.magicfoudation.org <http://www.magicfoudation.org/> . > > They have a ton of information available to you and your doctors. > Pamphlets, articles even videos of presentation from their annual > convention. Joining gains you access to even more great info on their > website as well as networking and their massive research article library. > > > > My second piece of advice is to stick around! This is a great bunch and > they are full of information and best of all support! > > > > Dayna, Mom to Alyssa RSS 4ys > > > > _____ > > From: RSS-Support [mailto:RSS- Support ] On > Behalf Of re_1wiily > Sent: Tuesday, January 24, 2006 6:24 PM > To: RSS-Support > Subject: Son's Silver > > > > We have a four year old son who has russell silver and have > encountered a great deal of difficulty with our local health agencies > who do not seem to know about or understand the nature of > his 'issues'. I'm often at a loss as to what to do or where to turn > so I thought I'd try this venue. Any advise? > CL > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2006 Report Share Posted January 25, 2006 Hey " CL " My name is Sheldon and i am a G-Pa to a little angel named Laikyn Helen and we are in North Dakota. My daughter had the same thing here. Everytime we would tell some one about her they would give us this stange look. Luckily her Ped Dr. had an idea. But you are your sons best advocate. Get as much info as you can from this site and any where else you can and teach the Dr. yourself. Trust me it will work and at the same time you will find new things about RSS as well so you will become better informed as well. Good luck and if you have any Questions do not be afraid to ask because everyone here will do what they can to help. Sheldon Son's Silver We have a four year old son who has russell silver and have encountered a great deal of difficulty with our local health agencies who do not seem to know about or understand the nature of his 'issues'. I'm often at a loss as to what to do or where to turn so I thought I'd try this venue. Any advise? CL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 hey CL, welcome to this great group of support and info!! we are like one big family here!! you need to join MAGIC they are a nonprofit org that provides tons of support and they have and awesome informational convention every july in chicago where you can get a 15-20 min consult with the US expert on rss as well as meet other rss parents and kids, and learn a ton of info!! ((HUGS)) there web page is www.magicfoundation.org jodie c (one of 4 jodis on the list) (nicholas-7 1/2 nonrss, christopher-5 rss 30lbs 39 " periactin, ght genotropin, assmentry (left side 1cm), scoliosis (8 degree curve), ADHD & OCD possible, currently having BS issues (hypo & hyper), athon- nonrss 2 /12) Quote Link to comment Share on other sites More sharing options...
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