Guestbook
Kristin Herman MD
Friday, 10 June 2005 01:13
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I am a medical genetics fellow (actually almost done) at Cedars-Sinai Medical Center in Los Angeles, California, United States. We recently diagnosed a patient with Aicardi-Goutieres syndrome, so I am learning a lot about this disorder.
In response to Mr. Gallagher (and others), my patient had a history of fevers very similar to your son. She was recently diagnosed with a seizure disorder and started on Depakene. Her mother told me that after the Depakene was started, her fevers stopped occurring. I have no idea if this is a cause-affect phenomona or the fevers just happen to resolve at the same time by chance. However, it might be something to look into.
My patient's mother is Spanish speaking. If there are any other Spanish speaking parents out there with an AGS child or relative, I would love to pass on your name and contact information to her so she can have the support from someone who knows the disorder. Fortunately, her daughter seems to be on the more mild end of the spectrum, but that still m
In response to Mr. Gallagher (and others), my patient had a history of fevers very similar to your son. She was recently diagnosed with a seizure disorder and started on Depakene. Her mother told me that after the Depakene was started, her fevers stopped occurring. I have no idea if this is a cause-affect phenomona or the fevers just happen to resolve at the same time by chance. However, it might be something to look into.
My patient's mother is Spanish speaking. If there are any other Spanish speaking parents out there with an AGS child or relative, I would love to pass on your name and contact information to her so she can have the support from someone who knows the disorder. Fortunately, her daughter seems to be on the more mild end of the spectrum, but that still m
Dan Gallagher
Monday, 16 May 2005 23:21
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My son was recently diagnosed with AGS. He will turn 4 months old on 5/18. He has recurrent low grade fevers that occur for 48 hours every 8 days. For anyone whose child has had this same sympton - at what age did the fevers stop occuring?
Ulrich Petersen
Thursday, 28 April 2005 09:08
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Hi.
I would like to hear from anyone who have had problems with Botox treatment exept Donna Miller. Our two children are having another tratment next month.There has been no problems so far.
We would like to hear from Donna Miller : Is it something the doctors say / have verified ?
Sincerely
Ulrich Petersen
I would like to hear from anyone who have had problems with Botox treatment exept Donna Miller. Our two children are having another tratment next month.There has been no problems so far.
We would like to hear from Donna Miller : Is it something the doctors say / have verified ?
Sincerely
Ulrich Petersen
june tonge
Wednesday, 06 April 2005 21:47
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i am desperate for some help from you parents out there my heart goes out to you all , i am the nannan of ross my e mail address as changed i have left messages on the net before and no reply i really am desperet for you parents out there to help my daughter and me please someone help me i am and i know all of you are as desperate as me but i cannot talk to my daughter and paul her husband cannot she is rosses mum and she feels that no one knows how she feels .
i have sent photos of ross to prof lazi and a letter but nothing at the moment as come back i am really desperate as i know you all are but we must help eachother in this awful syndrome please someone out there feels like i do i am a desperate nanan help me ,and all of you us
yours with love to you all june tonge
i have sent photos of ross to prof lazi and a letter but nothing at the moment as come back i am really desperate as i know you all are but we must help eachother in this awful syndrome please someone out there feels like i do i am a desperate nanan help me ,and all of you us
yours with love to you all june tonge
Claudine Gallagher
Friday, 01 April 2005 16:21
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Hi,
Our daughter,Katie, has just been diagnosed with AGS. We are still trying to find out as much as possible about this disease. My husband and I are looking to speak to other parents with children with this disorder. Katie was diagnosed at nine weeks, however unlike most of the surveys on this web page she had the condition at birth. Has this happened to any one else? We are keen to speak to other parents that this has happened to as we need to know if this means the condition will be more severe. We are also willing to co-operate with any one researching this disease so that a cure or prevention may one day be found.
Many Thanks
Claudine & John Gallagher
Our daughter,Katie, has just been diagnosed with AGS. We are still trying to find out as much as possible about this disease. My husband and I are looking to speak to other parents with children with this disorder. Katie was diagnosed at nine weeks, however unlike most of the surveys on this web page she had the condition at birth. Has this happened to any one else? We are keen to speak to other parents that this has happened to as we need to know if this means the condition will be more severe. We are also willing to co-operate with any one researching this disease so that a cure or prevention may one day be found.
Many Thanks
Claudine & John Gallagher
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