Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 My name is Sara, and my best friend lauren gave birth to a baby boy named Cody last feb. He has recently been identified with CHARGE syndrome. Since his birth, he has been in and out of the hospital, just this last sept. he coated on us and we almost lost him for good. But Cody pulled through and is now doing better than ever. He meets with his therapists three times a weeks. My reason for joining this group is so that i can get more information from others who also may have Charge themselves or have children who has Charge so we know what the doctors are talking about! Please feel free to contact me through e-mail with any information or any support group information. thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Sara, Welcome to the list, what a great thing for you to do for your friend. If she (or you!) has any specific questions about CHARGE please feel free to send them into the list, there's always a bountiful amount of info here on the list from others who've been there and done that. Usually, the first year is the hardest and things eventually calm down, so I hope that is the case for your friend, as Cody's 1st birthday is coming up soon. Take care and keep us posted on Cody, Weir Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Hello Everyone My name is Sara, and my best friend lauren gave birth to a baby boy named Cody last feb. He has recently been identified with CHARGE syndrome. Since his birth, he has been in and out of the hospital, just this last sept. he coated on us and we almost lost him for good. But Cody pulled through and is now doing better than ever. He meets with his therapists three times a weeks. My reason for joining this group is so that i can get more information from others who also may have Charge themselves or have children who has Charge so we know what the doctors are talking about! Please feel free to contact me through e-mail with any information or any support group information. thank you. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ---------------------------------------------------------------------------- -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 welcome to the group--hope you find it helpful, there are many people here I have come to feel as if they are family--and they always find a way to help us. mom to timmy 8 ChARGE, keegan 5.3/4, liam 3, wife to pat Hello Everyone > My name is Sara, and my best friend lauren gave birth to a baby boy > named Cody last feb. He has recently been identified with CHARGE > syndrome. Since his birth, he has been in and out of the hospital, > just this last sept. he coated on us and we almost lost him for good. > But Cody pulled through and is now doing better than ever. He meets > with his therapists three times a weeks. > My reason for joining this group is so that i can get more > information from others who also may have Charge themselves or have > children who has Charge so we know what the doctors are talking about! > Please feel free to contact me through e-mail with any information or > any support group information. > > thank you. > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2007 Report Share Posted August 10, 2007 It is a simple blood test for carnitine levels (or L-carnitine). I know what you mean about many people having more than just MS. I was reading a book and it mentioned the fact that MS is MULTIPLE sclerosis - meaning many things. Duh, huH? I never thought of it that way. But it's true - it seems that when all else is ruled out and many symptoms are there that it is inevitably MS. Take care and keep me posted on how you are doing. MS-Bill wrote: It seems odd anymore when a new person comes to our group and tells all they have wrong with them is just MS. MS always seems to go along with other medical troubles. I had my diabetes before my MS. How would a person know that they might have CD ? Bill Hello Everyone Hi Everyone!It's been awhile since I posted - I've still been receiving all the emails but I just kinda fell off the radar, as my friends call it when I kinda retreat for awhile.In addition to the MS I have finally been diagnosed with Carnitine Deficiency. Some of you may remember that a year and half ago I thought my middle son might be developing MS but it ended up being Carnitine Deficiency and he was hospitalized several times. Well, out of the blue I asked my GP to run my carnitine and she called back saying it was incredibly low. She also said that she knew nothing about how to treat this. So I was referred to UC Irvine to see a neuromuscular doctor. My regular neuro doesn't even know very much about carnitine and didn't know how to treat it. Well, it is now confirmed and I am starting to work with that.I am frustrated because now my neuro who had told me when my son was first being diagnosed - "I don't know what your son has,but I definately know you have MS." And he said that I probably had both MS and CD. Well, now at my last appointment he says - your MRI hasn't gotten any worse in the last two years - there are still some lesions but the MRI isn't getting worse. So now he says, I wonder if it really is MS? Can you even believe this after 16 years and I have all the usual symptoms of MS and he's seen spots? He says that usually MS gets worse over time and if it doesn't get worse on the MRI then maybe it isn't MS. I said, "But I've been doing the betaseron shots all that time - I thought the Betaseron was supposed to help prevent new lesions and improve the # and severity of attacks?" He said, "yes, it is" and then I said - well couldn't the Betaseron just be working and that we don't need to go back to square one because an MRI isn't getting worse and that now I also have Carnitine Deficiency (which he doesn't know how to treat). Well, if he doesn't know how to treat CD then how can he get distracted with it being MS or not?I told him this week that it is exceptionally hard to live in a what if? diagnosis - that maybe it is or maybe it isn't. THat it actually makes getting through daily life harder than if it is just definatively diagnosed. I told him I spent years like that and now I have had the definate diagnosis for probably 5 years and now we want to go back again? What the heck?How frustrating can these doctors be? Do they even have any idea of how they rattle our poor little lesion infested brains?Oh, well....just wanted to email everyone and say that I miss connecting with everyone and I just feel down in the dumps from his stupid conclusions.Love to everyone! Deao Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2007 Report Share Posted August 10, 2007 I take 2 insulin shots a day and before I could take my first one they made take a shot for Hepatitus B. I added a link to a story about Hepatitus B, Some think it is a cause for MS but I know I could never prove it. Bill Fueling the continuing debate over the safety of the popular hepatitis B vaccine, a new study suggests that it contributes to a tiny increase in the number of multiple sclerosis cases. Hello Everyone Hi Everyone!It's been awhile since I posted - I've still been receiving all the emails but I just kinda fell off the radar, as my friends call it when I kinda retreat for awhile.In addition to the MS I have finally been diagnosed with Carnitine Deficiency. Some of you may remember that a year and half ago I thought my middle son might be developing MS but it ended up being Carnitine Deficiency and he was hospitalized several times. Well, out of the blue I asked my GP to run my carnitine and she called back saying it was incredibly low. She also said that she knew nothing about how to treat this. So I was referred to UC Irvine to see a neuromuscular doctor. My regular neuro doesn't even know very much about carnitine and didn't know how to treat it. Well, it is now confirmed and I am starting to work with that.I am frustrated because now my neuro who had told me when my son was first being diagnosed - "I don't know what your son has,but I definately know you have MS." And he said that I probably had both MS and CD. Well, now at my last appointment he says - your MRI hasn't gotten any worse in the last two years - there are still some lesions but the MRI isn't getting worse. So now he says, I wonder if it really is MS? Can you even believe this after 16 years and I have all the usual symptoms of MS and he's seen spots? He says that usually MS gets worse over time and if it doesn't get worse on the MRI then maybe it isn't MS. I said, "But I've been doing the betaseron shots all that time - I thought the Betaseron was supposed to help prevent new lesions and improve the # and severity of attacks?" He said, "yes, it is" and then I said - well couldn't the Betaseron just be working and that we don't need to go back to square one because an MRI isn't getting worse and that now I also have Carnitine Deficiency (which he doesn't know how to treat). Well, if he doesn't know how to treat CD then how can he get distracted with it being MS or not?I told him this week that it is exceptionally hard to live in a what if? diagnosis - that maybe it is or maybe it isn't. THat it actually makes getting through daily life harder than if it is just definatively diagnosed. I told him I spent years like that and now I have had the definate diagnosis for probably 5 years and now we want to go back again? What the heck?How frustrating can these doctors be? Do they even have any idea of how they rattle our poor little lesion infested brains?Oh, well....just wanted to email everyone and say that I miss connecting with everyone and I just feel down in the dumps from his stupid conclusions.Love to everyone! Deao Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
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