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Normal behaviour, or linked to genetic condition?

(3 Posts)
Moogsmummy Thu 30-Sep-10 12:29:26

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 old as her Dad and a large proportion of his 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?

rabbitstew Thu 30-Sep-10 13:00:14

Well, if you read some of the other threads on here, it would appear to be pretty normal... (see, eg, "How set is their personality by the time they're 5?").

However, I know nothing about Neurofibromatosis and its associated conditions, so couldn't possibly say one way or the other whether what is normal in one child and eventually grown out of is a sign in another child of something a bit more than that. I think you will have to raise it with your dd's genetic team.

helenhn Sun 14-Aug-11 21:32:12

My DD has Nf1 and is 5 in a few weeks. She has yearly eye checks. When DD was younger I was almost looking for things wrong with her and indications of Nf1. Now I am far more relaxed and just enjoy her for being her. Her school is aware of her Nf1 condition and what to look for but say she is developing fine and is acting normally for her age. If you are worried I would contact your paediatric consultant and ask for an appointment - far better for your worries to be listened to by someone who may be able to help you and DD.

Often children behave far better at school than at home and challenge us more at home than they would ever think of doing with a teacher at school.

Because Nf1 can vary so widely in how it shows itself in people I can fully sympathise and identify with almost looking for symptoms of Nf1 as I used to but now I really try hard not to show it to DD as I think DD will pick up on my anxiety. Try to relax about it - I know its hard.

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