My now 4 year old DS was referred to genetics at a year old when in hospital for an unrelated matter they noticed multiple cafe au lait patches. We were told it was probable NF1 and a watchful waiting approach was adopted and he had all appointments he would have if he was officially diagnosed.
After a check up yesterday the geneticist says that he doesn't meet the diagnostic criteria yet but she is certain it's NF1. She is arranging genetic testing, a positive result will get us his diagnosis and she said that if it comes back negative she's inclined to diagnose mosaic NF1, meaning not all his cells are affected. This is brilliant news, as a proper diagnosis means I can talk to his school and make them aware of the behavioural and learning issues associated with Nf1, and hopefully he can get support if needed.
I think we are also looking at an adhd diagnosis in the future, which again, will hopefully be good in terms of him and us getting support.
Has anyone else got a child with NF?