Guestbook
Kenny Tan
Tuesday, 20 April 2004 03:49
This email address is being protected from spambots. You need JavaScript enabled to view it.
i am a ObGyn resident in Singapore. I was wondering if anyone has had any experience with ANTENATALLY diagnosed/highly suspect cases of AGS, with evidence of intracranial calcifications on ultrasonography, in the absence of intra-uterine infection/psuedoTORCH syndrome.
the literature and experience seems to be limited to post-natal cases.
would appreciate if anyone could enlighten me on this.
thank you.
the literature and experience seems to be limited to post-natal cases.
would appreciate if anyone could enlighten me on this.
thank you.
Nancy Jaehrlich
Tuesday, 13 April 2004 18:29
This email address is being protected from spambots. You need JavaScript enabled to view it.
I am hoping someone can help with some suggestions. My daughter is six, and has AG. Recently she has started to have fevers that come and go. She is also gagging frequently which is causing her to throw up. We have not experienced this before and the possibility of an infection has been ruled out. We have not seem any signs of regression of her abilities, and are not sure wether this is tied in with the progression of the disease or not. Thanks for any input.
Thomas Tsoi
Tuesday, 09 March 2004 05:32
This email address is being protected from spambots. You need JavaScript enabled to view it.
I am a pediatrician from China, recently encounter a patient fit almost all of the criteria of Aicardi Goutieres syndrome, we have excluded intrauterine infection, but we have nowhere to send out spinal tap for interferon alpha evaluation, I come across your web site, and find a doctor in France who can do the test, i wonder if any of you can send me his email address so i can contact him to see if I can send the spinal tap fluid to his lab, and wonder if there is any special requirement for shipping.
Thanks
Thanks
Julie
Saturday, 06 March 2004 02:11
This email address is being protected from spambots. You need JavaScript enabled to view it.
I have a 1 year old daughter, born 2-25-03, who was diagnosed with this disease at 6 months of age. She is missing part of her left Basal Ganglia, has calcification of brain, seizures, and is legally blind. At 8 months of age, she lost interest in eating and had a G-Tube inserted for feeding purposes. We are currently receiving 3 sessions of Physical Therapy, 3 sessions of Occupational Therapy and 1 session of Visual Therapy per week, which has helped her physical development. However, she is still significantly delayed in her development, as we are still focusing on helping her to maintain head and trunk control. We live in upstate New York. I would like to hear from other families with firm diagnoses of this disease, in order to learn from their experiences. My daugter is a beautiful blessing in my life and I would like to help her develop to her fullest potential.
Harry Clark
Wednesday, 03 March 2004 15:10
This email address is being protected from spambots. You need JavaScript enabled to view it.
My son (Charlie age 3)was diagnosed yesterday- what should i expect? He was apparently mis-diagnosed with c.p. at 14 mos, he is doing well with his therapies, walking with a gait trainer, eating by mouth and through a feeding tube. He seems quite happy and content. He has had no seizures or convulsions, he had good head controll and can lock his legs to support his weight although he can not balance, he can tug the glasses off my face but has very minimal use of his fingers.Any help would be appreciated. Thank you in advance.
389 entries in guestbook