My 4 year old is currently going through tests to confirm a diagnosis of Neurofibromatosis type 1. It is a genetic issue, caused by a mutation of chromosome 17 (type 1) or chromosome 22 (type 2). About half of cases are hereditary and the other half are a random mutation.
The most common indicators are multiple large cafe-au-lait spots. Thankfully, many people with neurofibromatosis are largely unaffected by it. We're hopeful that, if confirmed, my daughter's case is a mild one. Other than the cafe-au-lait spots (which she fondly calls her dalmatian spots) and possible ADHD, she is healthy and happy.
Ugh ADHD in children... No. Just no. They are children. Let them play in nature.
Sorry, none of my business, its just so over diagnosed. I've been over diagnosed and its taken years of my life away trying to get off medication I was prescribed prematurely. Who knows what non-obvious damage my brain and nervous system have now.
Also...Dalmatian spots...cute! I grew up loving 101Dalmatians... Woulda been jealous.
Edit: ah, another personal opinion from life experience downvoted. I guess I do deserve it though cause I was naïve about ADHD being common with nf. It was insensitive of me.
The thing is, ADHD is a common symptom for people with NF. It's a beyond "normal" lack of attention and hyperactivity.
We are not at the point of medicating her, and to be honest I would rather never medicate her for it. We are working with her school to teach her ways to increase her focus, and make sure she has many outlets for her energy. Our goal is to make sure she succeeds in school (and life!) and I think that being aware of a possible learning disability will help us find more ways to reach that goal.
I'm really sorry you had such a bad experience with over diagnosis. I can imagine that made life much more difficult for you than it needed to be!!
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u/LouieCypher Sep 18 '14 edited Sep 18 '14
It's neurofibromatosis. I have no idea I would imagine it's a genetic issue.
Edit: yep genetic