I am a parent who has two children with CDGS. Dylan was diagnosed January 1998 and Shannon shortly after birth. I am finding it very hard to get information on CDGS. At present, we do not know which type Dylan and Shannon are, but I do know that they are not type I.

When Dylan was born everyone thought that he was a normal baby, but by the time he was one month old he was vomiting most of his feeds. I was taking him to the doctor at least once a week but the doctor didn't seem worried as Dylan was gaining weight as he was not dehydrated. When Dylan was 3 ½ months, he was referred to the hospital because he was not holding his head properly. From Wexport Hospital he was sent to Dublin's Temple Street Children's Hospital. We spent 6 weeks in Temple Street with every test under the sun being done. We were let home with no diagnosis, only possible medabolic disorder.

Dylan spent a lot of time in hospital over the next year with chest infections, severe seizures, and reflux. His med- cations include sabril (an anticonvulsant) and inhalers and laxatives. At present he cannot hold his head, has poor eye sight, and poor hearing. He is always smiling and loves attention. He feeds quite well, eats liquidised dinner and cereals, and drinks ordinary milk with thickener.

Dylan's sister Shannon was born after a difficult labor. Weighing 10lbs. the doctors said they could see nothing wrong with her and sent her home. She had an appointment for Temple Street Hospital when she was two months old. When Shannon was 6 weeks old she had a seizure and stopped breathing for 1½ minutes. When she arrived at the hospital, she did it again. That night she was stable, and the next morning she was sent to Temple Street. Over the next few weeks she had seizures with apnea about 5-10 times a day being about two minutes each.

Shannon was Christened in Temple Street Hospital because of how sick she was. The neurologist started her on phenobarbital, but it didn't seem to make any difference. So sabril (vigabatrin) was added and the seizures stopped. We took Shannon back to Wexford where she started having apneas and seizures again. Dr. King (neurologist) started Shannon on rivotril which helped for a while but the apneas have started again.

For all the time Shannon and Dylan have spent in hospital, they never stopped smiling. Shannon was a great feeder drinking 9oz. bottles and eating spoon feeds, but recently she got pneumonia and has NG tube which she is getting most of her feeds from. Shannon is a large baby weighing 10 kg and Dylan's weight is 13 kg.