Hi, I have been thinking about posting for a long time.
My DD (5) has Neurofibromatosis Type 1. We have known she has it since she was a few months as her Dad and a large proportion of her family have it.
She has good care and is under the genetic team at Oxford. Annually she has eye checks, sees the paediatrician and has recently (January) had plastic surgery for a plexiform tumour that is growing on her left arm. She also has a combined Physio/OT assessment coming up in half term.
Aside from physical difficulties I am beginning to wonder if she may have learning difficulties. She also displays some characteristics of Asperger's. She can be difficult and her social skills lack compassion. She often comments about other people in a negative way, is too 'in your face' and very bossy. She has to be in control and likes me to pretend to be cartoon characters. She has meltdowns if there is a change of routine. She is also a major drama queen and cries at the drop of a hat.
School seem happy with her and so far the teacher hasn't said anything negative, other than she doesn't always do as she is told straight away.
Is this normal 5 year old stuff? I am wondering if I am reading too much into her behaviour because of her NF?