Stian (5) was a very happy baby. He was breast-fed until he was 11 months, the only worry we had was that he hardly made sounds, he just smiled and laughed all the time. At 6 months he was quite chubby. When he turned 18 months we started getting worried about his speech. I contacted the local health center but they just blew me off. I had a feeling that they thought I was another hysterical mother. We had to wait until the 2-year control. After going through the system a few times Stian started with speech therapy when he was 3. The therapist believed Stian was stubborn and not willing to speak, his theory was to break down Stian’s stubbornness... (only made things worse!). We discussed with the speech therapist several times about having a clinical examination. He got quite angry each time we brought the subject up. We were un-comfortable with the situation. Luckily we have had great help in Stian’s pedagogue at daycare, (she helps Stian with eating, communication, stimulation etc). The pedagogue also understood that maybe the problem lay somewhere else and she helped us to get in contact with one of Norway's best child neurologists. It took the doctor 15 minutes to give us a diagnosis!

Once we had a diagnosis and we got into the hospital system we could stop fighting. We were offered great help and understanding. Stians MR convinced the doctors that it was WDS. The first EEG showed some un-normal activities, but the next two showed none. Stian has never had any seizures. The hospital that examined our child had no knowledge of other children in Norway with WDS at this point. We have found out that there are at least two other boys in Norway with WDS, but we are not in contact with them yet. We have found all information about WDS on the Internet.

We understood pretty early that Stian has a mild form of WDS. This was verified when we met other children in London in May. Stian has good fine motor skills, but he has a slight hand tremor (especially early in the morning - he seems to warm-up during the day though…!). He has chewing/drooling problems because of his tongue. He eats everything though, and his favorite food is sushi!

Stian is very intelligent and will be attending a normal school. His speech is improving and people who know him understand 90% of his language. The main problems are K,G,R,S,F and V's. We have been through lots of tests to find out which difficulties we need working with. He doesn't hold a pen with enough strength, but he is good at all sports (especially ball sports). In September we are going to get a plate fitted to the roof of his mouth with a small "bead" attached to it, to help stimulate his tongue and swallowing. His tongue movements are slowly improving - before he couldn't pull his tongue out at all but now he can. There are no side movements, and he cannot point it. This autumn he will receive speech therapy. We hope this will help him even more.

I have contacted the Swedish and Danish seldom syndrome groups to try and find help in Scandinavia but neither had heard of WDS.

The whole family attended the fun day in London to try and find out more and to meet others with WDS. This was a great experience. We learned more about the syndrome, and met lots of lovely and friendly people. It was a little peculiar to be able to examine other handicapped children without feeling rude. Usually you tell your children not to stare! We wished afterwards that we had more time to meet other parents as we traveled from abroad. We had spare time, but we understand that others were eager to get home. Maybe this could be arranged next time? ;))

Two weeks ago Stian received a personal computer (one for home and one for daycare!) He's getting quite good at the games bit.... After the holidays he will get Boardmaker installed (a picture based program). He will also be getting a digital camera so that he can take pictures to use at daycare. The specialists think that this will help stimulate his language. (He's a bit lazy about giving any information away for free, but if he gets excited you can hardly stop him!). Stian will be attending school next year (they start at 6 here) so he has got a full year to manage the computer stuff. He will be attending a mainstream school. His big brother Erik (7) will be good to have then!
Hope this information can help others in (small) countries where WDS is not acknowledged yet. What kept me going until Stian got a diagnosis was that I knew my child better then anyone else and the doubt/feeling that something wasn't right kept coming back. If we had done as advised from many and waited until he got older Stian would have never been prepared for school.

Ole and Marie Gundersen