Yes, there is family from Norway with two daughters. They attended the AGS conference in Italy in 2001. If you contact Dr. Crow, he may know more about this family and how you may contact them.

Hello!
I wonder if there is more in Norway who have children diagnosed with aicardi goutieres?

Have a boy,almost 3, who recently was diagnosed, it was hard.

How do it go with their children? Is there any form of exercise / medication you can recommend? We are struggling a bit with sleep, and some spasticity.

Hoping for an answer:)!

Greetings from Norway!

Dear Guest So sorry to hear of your loss. This is a great site that many of us have been so fortunate to use to navigate the AGS world. We have 4 kids Only one is AGS The last one There are 20 years between him and the 1st We never knew we carried the gene. But through this site We know of several families that have used specialist to help with genetic testing pre and post conception. Dr Crow and his organization are the contacts if you and your family are interested in this process. Again our prayers are with you

AGS is a syndrome, which means that there are a long list of possible symptoms, but not every child will have every symptom. Ask the doctors to explain the symptoms that your child has, and why they think it is AGS. Also, there are 5 known genes that fit 80% of the kids. Ask if it is known which gene your child has. There is a different outlook to the different kinds, and there are some different things to know about if you have a certain kind. If you are in the 20% that do not have a gene identified yet, ask them if there is further testing that might help.

There are many things to watch for and that need testing and monitoring. You need the docs to make a plan on what needs to be tested for, when, and by whom. You need to get other specialists to see, such as orthopedic, pulmonary, gastric, neurology, metabolic/endocrine, sleep doctor, etc.

Dear Guest, we are very sorry to hear that your son lived only 10 days. Thank you for sharing with us. Some families have multiple kids because they choose to try for another kid. Many families have multiple kids because the first child was misdiagnosed with a viral infection, and so were told that it would not repeat. AGS mimics viral infections because it invokes the anti-viral pathways in the body. Many, many kids are misdiagnosed on the first child.

I've been reading all your comments and i'm pleased to hear your children are doing ok despite the struggles and the lack of information because it's so rare!

Unfortuantely, my little boy didn't live longer than 10 days, and the pathology report indicates that he probably had AGS (TBC'd). I notice that a lot of you talk of several children. Do all your children have AGS?

I'll check back on here for any replies.
Great website sharing experiences -thank you!