At Andrew’s three year checkup, his pediatrician noticed the presence of multiple café au lait spots on Andrew’s body. He referred us to a genetic specialist for further investigation. He also printed out some general information about NF. The specialist clinically diagnosed Andrew with NF type 1, and a genetic work-up confirmed the initial diagnosis. The original diagnosis was on October 27, 2016.
Currently Andrew is only showing the symptoms of the café au lait spots, possibly some small tumors on his back, and some learning delays. He has been visiting a speech therapist for nearly a year prior to the diagnosis of NF1. He recently began occupational therapy for other delays. The eye specialist did not find any issues with his eyes, except that he has a weak eye, which we are beginning to treat with glasses and soon patching. The only medical concern was elevated blood pressure, which we had rechecked and it was at a normal level.
The main impact seems to have been on me, as his mother, and I have been struggling with the diagnosis more than Andrew. He is still too young to understand what having NF1 means for him, and it’s still too early for anyone else to know how NF will affect him.
As a teacher, I know that he will probably need an IEP when he enters Pre-K, and I’m trying to get him into a head start program which will get him access to needed services even earlier. It is still unknown how many and to what severity of learning disabilities which Andrew struggles. As we learn, I will do everything in my power to get him the help he needs.
My one hope is that he will have a long, happy life despite his diagnosis.
– Karen, Andrew’s mom
QUICK TAKES
Hobby He loves to play with his older brother, and watch anything with cars and trucks. Favorite motto NF won’t break me, I’ll break it! Superpower Andrew’s super power would be to destroy any obstacles in his way. |
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