Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Marilyn, So pleased to hear that the MRI was negative I've been thinking of a lot over the last few days and hoped it would be better news. I hope the pain stops and you are able to find out what is causing it. take care Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Marilyn, So pleased to hear that the MRI was negative I've been thinking of a lot over the last few days and hoped it would be better news. I hope the pain stops and you are able to find out what is causing it. take care Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Marilyn, So pleased to hear that the MRI was negative I've been thinking of a lot over the last few days and hoped it would be better news. I hope the pain stops and you are able to find out what is causing it. take care Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Wonderful news on the MRI. On the JRA Have they done any basic blood work, such as a SED rate, just as a starting point? Do her joints get red, hot and swollen with the pain? Are those symptoms different in JRA? Have you looked it up? Also on the osteoporosis, will they consider doing a DEXA scan to map her bone density? Seems like the doc who follows her for her growth hormone should be able to arrange this. Just some ideas and we are praying for the pain to stop. Kim L > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 6, 2004 Report Share Posted May 6, 2004 Wonderful news on the MRI. On the JRA Have they done any basic blood work, such as a SED rate, just as a starting point? Do her joints get red, hot and swollen with the pain? Are those symptoms different in JRA? Have you looked it up? Also on the osteoporosis, will they consider doing a DEXA scan to map her bone density? Seems like the doc who follows her for her growth hormone should be able to arrange this. Just some ideas and we are praying for the pain to stop. Kim L > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 6, 2004 Report Share Posted May 6, 2004 Wonderful news on the MRI. On the JRA Have they done any basic blood work, such as a SED rate, just as a starting point? Do her joints get red, hot and swollen with the pain? Are those symptoms different in JRA? Have you looked it up? Also on the osteoporosis, will they consider doing a DEXA scan to map her bone density? Seems like the doc who follows her for her growth hormone should be able to arrange this. Just some ideas and we are praying for the pain to stop. Kim L > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 6, 2004 Report Share Posted May 6, 2004 Michele: We have a possibility of 2 Shriners willing to sponsor . I haven't check ed for clinic being held here in Indy. I've been on the Shriner's Chicago website, but should probably do a search for the Indianapolis area. We have a large Shriner's population in INdy, so I'm sure it won't be aproblem to find a sponsor one way or the other. And Chicago sounds like it has all the options we need to investigate - scoliosis/spinal problems, rheumatology, etc. I'm going to be looking into this aspect a bunch more. You are right - Free care from experts: Can't beat that anywhere, anyway! We've not had any blodd work done yet. The docs just wanted to follow up in 6 months. I think our family doc is just at a loss right now. I'm not sure he is currently aware of the increased " travelling " pain is having. I will need to call him about that and see if he received the radiology report on her left shoulder (which appears fine today but her right one is bothering her!). I'll ask about the blood labs then. Thanks for the input. Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: update Great news about the neg MRI!! I hope you find answers to her pain soon. I don't think you need a dx to go to Shriners -- but you need to have a condition that falls under what they cover. I mean, having a dr refer you for more indepth exam or having the risk of a covered condition might be enough. Given that you have the scoliosis dx, I don't think you'd have a problem getting in. You need a Shriner member to sponsor you and take your app. We have many in our community and they are always pleased to find another child they can serve. In fact, ocassionally (annually maybe) our group does an intake clinic at one of the churches for kids with a need to come in to see if they qualify and go through the application process. It's not a big deal really -- just find a Shriner to help you through. I can't recommend them highly enough. Free care from experts?? How can you beat that?? Michele W Aubrie's mom 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 May 6, 2004 Report Share Posted May 6, 2004 Michele: We have a possibility of 2 Shriners willing to sponsor . I haven't check ed for clinic being held here in Indy. I've been on the Shriner's Chicago website, but should probably do a search for the Indianapolis area. We have a large Shriner's population in INdy, so I'm sure it won't be aproblem to find a sponsor one way or the other. And Chicago sounds like it has all the options we need to investigate - scoliosis/spinal problems, rheumatology, etc. I'm going to be looking into this aspect a bunch more. You are right - Free care from experts: Can't beat that anywhere, anyway! We've not had any blodd work done yet. The docs just wanted to follow up in 6 months. I think our family doc is just at a loss right now. I'm not sure he is currently aware of the increased " travelling " pain is having. I will need to call him about that and see if he received the radiology report on her left shoulder (which appears fine today but her right one is bothering her!). I'll ask about the blood labs then. Thanks for the input. Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: update Great news about the neg MRI!! I hope you find answers to her pain soon. I don't think you need a dx to go to Shriners -- but you need to have a condition that falls under what they cover. I mean, having a dr refer you for more indepth exam or having the risk of a covered condition might be enough. Given that you have the scoliosis dx, I don't think you'd have a problem getting in. You need a Shriner member to sponsor you and take your app. We have many in our community and they are always pleased to find another child they can serve. In fact, ocassionally (annually maybe) our group does an intake clinic at one of the churches for kids with a need to come in to see if they qualify and go through the application process. It's not a big deal really -- just find a Shriner to help you through. I can't recommend them highly enough. Free care from experts?? How can you beat that?? Michele W Aubrie's mom 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 May 6, 2004 Report Share Posted May 6, 2004 Michele: We have a possibility of 2 Shriners willing to sponsor . I haven't check ed for clinic being held here in Indy. I've been on the Shriner's Chicago website, but should probably do a search for the Indianapolis area. We have a large Shriner's population in INdy, so I'm sure it won't be aproblem to find a sponsor one way or the other. And Chicago sounds like it has all the options we need to investigate - scoliosis/spinal problems, rheumatology, etc. I'm going to be looking into this aspect a bunch more. You are right - Free care from experts: Can't beat that anywhere, anyway! We've not had any blodd work done yet. The docs just wanted to follow up in 6 months. I think our family doc is just at a loss right now. I'm not sure he is currently aware of the increased " travelling " pain is having. I will need to call him about that and see if he received the radiology report on her left shoulder (which appears fine today but her right one is bothering her!). I'll ask about the blood labs then. Thanks for the input. Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: update Great news about the neg MRI!! I hope you find answers to her pain soon. I don't think you need a dx to go to Shriners -- but you need to have a condition that falls under what they cover. I mean, having a dr refer you for more indepth exam or having the risk of a covered condition might be enough. Given that you have the scoliosis dx, I don't think you'd have a problem getting in. You need a Shriner member to sponsor you and take your app. We have many in our community and they are always pleased to find another child they can serve. In fact, ocassionally (annually maybe) our group does an intake clinic at one of the churches for kids with a need to come in to see if they qualify and go through the application process. It's not a big deal really -- just find a Shriner to help you through. I can't recommend them highly enough. Free care from experts?? How can you beat that?? Michele W Aubrie's mom 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 May 6, 2004 Report Share Posted May 6, 2004 Marilyn. Thanks for the update about . But, not much answered. Did they do any bloodwork for the JRA? It is a blood test--they look for RA Factor. For me and my RA, I have all the symptoms but my RA Factor is negative, so they treat it like RA but call it Pallindromic Rheumatism. So, with , perhaps they can do the same? Hard to know what to do next, but seems to me a blood test (if they haven't done it specifically for RA factor (or maybe there is a different name for JRA) that would be a logical starting point. (Of course, we all know that often Logic Road is a dead end!). pam > ---------- > From: Rick Ogan > Reply To: CHARGE > Sent: Wednesday, May 5, 2004 11:51 PM > To: CHARGE > Subject: update > > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 6, 2004 Report Share Posted May 6, 2004 Marilyn. Thanks for the update about . But, not much answered. Did they do any bloodwork for the JRA? It is a blood test--they look for RA Factor. For me and my RA, I have all the symptoms but my RA Factor is negative, so they treat it like RA but call it Pallindromic Rheumatism. So, with , perhaps they can do the same? Hard to know what to do next, but seems to me a blood test (if they haven't done it specifically for RA factor (or maybe there is a different name for JRA) that would be a logical starting point. (Of course, we all know that often Logic Road is a dead end!). pam > ---------- > From: Rick Ogan > Reply To: CHARGE > Sent: Wednesday, May 5, 2004 11:51 PM > To: CHARGE > Subject: update > > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 6, 2004 Report Share Posted May 6, 2004 Marilyn. Thanks for the update about . But, not much answered. Did they do any bloodwork for the JRA? It is a blood test--they look for RA Factor. For me and my RA, I have all the symptoms but my RA Factor is negative, so they treat it like RA but call it Pallindromic Rheumatism. So, with , perhaps they can do the same? Hard to know what to do next, but seems to me a blood test (if they haven't done it specifically for RA factor (or maybe there is a different name for JRA) that would be a logical starting point. (Of course, we all know that often Logic Road is a dead end!). pam > ---------- > From: Rick Ogan > Reply To: CHARGE > Sent: Wednesday, May 5, 2004 11:51 PM > To: CHARGE > Subject: update > > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 6, 2004 Report Share Posted May 6, 2004 In a message dated 5/5/2004 8:53:21 PM Pacific Daylight Time, oganr@... writes: > Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Marilyn, YES, it can. That's what they do when my daughter has to take my grandson to the ER when he can't MOVE something. Hang in there, we're still saying prayers for . Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 In a message dated 5/5/2004 8:53:21 PM Pacific Daylight Time, oganr@... writes: > Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Marilyn, YES, it can. That's what they do when my daughter has to take my grandson to the ER when he can't MOVE something. Hang in there, we're still saying prayers for . Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 In a message dated 5/5/2004 8:53:21 PM Pacific Daylight Time, oganr@... writes: > Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Marilyn, YES, it can. That's what they do when my daughter has to take my grandson to the ER when he can't MOVE something. Hang in there, we're still saying prayers for . Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 hope all is getting better--glad the mri was ok. hugs going your way!! maria update > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 7, 2004 Report Share Posted May 7, 2004 hope all is getting better--glad the mri was ok. hugs going your way!! maria update > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 May 7, 2004 Report Share Posted May 7, 2004 hope all is getting better--glad the mri was ok. hugs going your way!! maria update > Just wanted everyone to know that 's MRI results were negative - > YEAH!! They said NOTHING showed on the MRI. Answered prayers??? Not sure > what was showing up on the initial x-ray. > Definitely great news, but... > > continues to have joint pain that " travels " . Now maybe we need to > pray that the pain - whatever the cause - just stops. Can > muscle/liagments/etc. show on an x-ray if inflamed enough? Our family doc > talked to the endo, and they both say wait 6 months and x-ray again to see > if anything changes. Not sure that is really an option with the amount(s) > of pain has. Still wondering about the Juvenile Rheumatoid > Arthritis aspect. > > Question for anyone who has been to a Shriner's Hospital: > Do you have to have a diagnosis to apply to them? We have a scoliosis dx, > but wondered if we went for that if we could request additional testing for > JRA. Shriner's Chicago has listed Rheumatology specialists on their > website. > > I just wanted to primarily let you all know the news about the MRI and to > say " thank you " to all who have remembered her in your hearts. > If we find anything else, I'll let you know. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) > Wife of Rick > oganm@... > oganr@... > > > > > 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 June 17, 2004 Report Share Posted June 17, 2004 good for you!! wish I could say the same---if I just wawsn't so adicted to food! maria Update > Well I'm 2 weeks post op and have already lost 20 pounds! > I am doing great > > Kay > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 good for you!! wish I could say the same---if I just wawsn't so adicted to food! maria Update > Well I'm 2 weeks post op and have already lost 20 pounds! > I am doing great > > Kay > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 good for you!! wish I could say the same---if I just wawsn't so adicted to food! maria Update > Well I'm 2 weeks post op and have already lost 20 pounds! > I am doing great > > Kay > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 WOOOOHOOOOO, Kay. Way to go!! pam > ---------- > From: Kay Lynd > Reply To: CHARGE > Sent: Thursday, June 17, 2004 7:35 AM > To: CHARGE > Subject: Update > > Well I'm 2 weeks post op and have already lost 20 pounds! > I am doing great > > Kay > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 WOOOOHOOOOO, Kay. Way to go!! pam > ---------- > From: Kay Lynd > Reply To: CHARGE > Sent: Thursday, June 17, 2004 7:35 AM > To: CHARGE > Subject: Update > > Well I'm 2 weeks post op and have already lost 20 pounds! > I am doing great > > Kay > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 WOOOOHOOOOO, Kay. Way to go!! pam > ---------- > From: Kay Lynd > Reply To: CHARGE > Sent: Thursday, June 17, 2004 7:35 AM > To: CHARGE > Subject: Update > > Well I'm 2 weeks post op and have already lost 20 pounds! > I am doing great > > Kay > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Kay - That is so awesome! I hope you continue to have good results and good health... Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
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