“Nobody ever really knew what it was, so I think that was the hardest for us, those four years of just what could it be? Could it be something you know life threatening? Who knows what it could be……. before he was diagnosed, I was always worried and sometimes I would put it in the back of my mind for a few weeks and not think much of it until he got like a really bad cold ….. we were always worried because we knew something was wrong.” (mother 10)
A considerable number of parents reported frustration and feeling dismissed when raising the issue of their child’s symptoms to medical experts or to their extended family and friends; many were told their child would probably grow out of their symptoms: