Our son Thomas (6yrs) has just been confirmed as having AGS. Is there any information available about what we can expect in the future? Also is there anyone else with this syndrome in New Zealand or Australia we can communicate with. I was glad to find your site.

Dear Silvia Torradinhas,
it was not possible for me to contact you via e-mail.
I believe you have written your e-mail address wrong. Please check it or send me directly an e-mail to mustafaoezer@aicardi-goutieres.com

Thank you in advance
Mustafa Özer

I have a neighboor whith that sindrome. I´d like to help her parents with some information.
Please mail me anything that can help me.
Her name is Inês and she is 12 years old.
thank you.

My son is six years old. He had CMV pneumonia when he was 7 weeks old. He has also had white matter changes on scans as well as calcifications. He has been undiagnosed for a long time. He has pituitary problems as well. He doesn't release sugars, or produce GH and cortisol. He has asthma and allergies. His lung seem to be stabelized thru maitnance. How ever he went deaf at the age of three. At that same time showed more white matter changes on his MRI. There is no pattern to any of his scans. He is more stable now and not showing much change in scans now, however he has one eye dialating, and one side of hes body showing weak and slow reflexes. Both of these are on his left side. In previous spinal fluid draws he had elevated protein and white cell count. Does any of this make since or seem like A-G syndrome?

My niece has been misdiagnosed with CP. She is now 8 years old. Which tests can be done now to rule in or out the possibilty that she has Aicardi-Goutieres syndrome? She certainly has many of the same histories as the children described in the surveys.