NCM 101

I had my first appointment with the pediatric neurologist today. He was super nice, spent a lot of time with us, and is wonderfully experienced in neurology, EXCEPT on the subject of Neurocutaneous Melanocytosis.  So, when I call this post NCM 101, I mean to say that my parents did most of the "teaching" with the little bit that they learned at the medical conference last month.  The doctor is definitely a keeper, nonetheless.  Right away, he is going to sit down with the radiologists and make sure he knows what they saw on my brain and why they say it is a melanosis.  He is also going to research and educate himself about NCM, and will be calling mommy and daddy with answers to the numerous questions they presented to him. 

That being said, we did learn a little at the appointment -- some good, and some not so good.  First to the good news... he does not believe the spot I have will cause any risk of hydrocephalus.  This is one of the biggest concerns of NCM, so I am grateful for that.  He also does not believe that the risk of developmental delay is very high.  That's another plus.  But on to the not so good... unfortunately, mommy and daddy will have to watch me very closely because there is a chance the spot could cause seizures.  They would likely be "staring spell" seizures, and the doctor is not sure of how great the risk of seizure is for me.  Hopefully he will know more after he chats with the radiologist and learns more about my spot.  The other "not so good" that came up is that he thinks I may need to have more MRIs, and soon.  I'm not so sure about this, and we'll be checking around thoroughly before I go under again. 

We'll definitely be having a regular relationship with this doctor, but to get us started off right, mommy and daddy have decided to take me to see some NCM specialists in San Fransisco.  The word on the street is that there is a dermatology-neurology-radiology trio at UCSF that are the who's who on the subject of congenital melanocytic nevi and NCM.  And of course, my parents want nothing but the best for me.  So a-travelin' we will go.  It is going to be tricky trying to coordinate appointments with all of the doctors so I'm not sure how quickly we'll be able to make it, especially since we have to plan around my surgeries and expansions.  But mom got the ball rolling today and already has an appointment with the dermatologist for me just after Thanksgiving.  If the stars align, the neurologist will be available that day too.  If not, we may not get to go until after my second surgery, which is scheduled at the end of March, 2011.   

All in all, I'm doing great and am totally on track.  Mom's bringing out the big guns though and enlisted a government program to make sure I stay that way.  It's wonderful because it's free, and they will also help me with physical therapy when I am going through my surgeries.  I get to meet my case worker and physical therapist on Friday and I'll let you know how it goes.