Sevin Ö.

Sevin Ö. (Germany)

I hope, here with to know more about the Aicardi-Goutières syndrome and do have the possibility to

exchange our experiences.


This is about my son Sevin. He was born on 29.01.1999 in Bochum (Germany) at the St´Elisabeth hospital. The delivery was as normal and without any complication. After i recognized two curvatures on the rear side of his head, the doctor was informed immediately. He mentioned that the bulging is not that serious and would vanish within next weeks. After some weeks thosecurvatures disappeared.



A pediatrician has found some white spots in the head, that was sighted with the help of an ultrasonic instrument, and she recommended us to the specialaized Unviersity pediatric clinic in Bochum. They made the same diagnostic. In the mean time my son was about 2 months old. To examine the spots and it´s origin they admitted him at the hospital for further inquiry.


Even if the blood and urin was examined in the laboratory, they had to take even the brain fluid to get more details. As result they detected a large amount of protein in the brainfluid. Further medical tests were needed eg.:eye, ear, EEG, MRT and at the final the CT. Through the CT method they found that the white spots were lime deposits. At last the doctors came to an determination, and were sure that they found the Aicardi-Goutières syndrome in my son.


Sevin after 7 months: Unfortunately there is no sign of any improvement in his situation even mentally nor physical. He cannot even erect his head and fix the eye direction. Also generally his condition is not stable.


During some occations he is very quiet, drinks and sleeps very well. But more frequently he is restless. Besides, he drinks badly, chokes frequently, sleeps restlessly and awakes after a short time. Mostly he is having problems with the stool movement. We use to give him laxative.


Sevin with 13 months: For about a month we began with Luminaletten (an anti-cramp-medicament), the EEG test showed that there were signs of cramp attacks. Even after 6 weeks passed by, the medicine did not improve his situation. It is probably normal that these type of medicine need more time to have affect. The cry attacks has decreased, and his general condition is still changeable.