Friday, August 20, 2010

Lots of Good News!

Where do I start?  Well, the neurologist we saw a couple of days ago did just what he said he would do: he reviewed my MRI scans with the radiologist, and he did some research about NCM.  Then he called mommy with the good news -- he is not worried about me at all.  The particular melanosis that I have on my brain is not expected to grow or develop in any way.  It should stay just where it is, which is in a place that doesn't interfere with anything.  He is no longer worried about seizures, and doesn't think I need another MRI (unless, of course, symptoms do develop).  So, just as our dermatologist said, although I have a spot, and technically have NCM, it should not affect me.  He does want mommy to take me to an opthamologist to have my optic nerve looked at, of all things! But whatever, we'll just tack that on to the number of specialists I need to see.

Now, mommy - being the hyper-control freak thoroughness queen, and daddy - wanting some reassurance, still plan to take me to San Fransisco to see the specialists out there.  It is so nice that my neurologist here is willing to learn about NCM along my journey, but my parents want to hear my prognosis from someone with direct experience.  So we're still hitting Frisco, which is a-ok because we can hopefully make a pit stop at the Ghiradelli ice cream parlor.

And that leads me to the next bit of good news.  The UCSF neurologist's office called mommy and let her know that the doctor has appointments available on the same day as the dermatologist with whom mommy already made an appointment.  Unfortunately, they won't actually book me until they get my local doctor's referral and my medical records, but they should have that next week and hopefully we'll be able to snatch up an appointment on the day we want.  That means I'll get to go before my surgeries!

Now, I mentioned a few days ago that mommy signed me up for a program where professionsals would keep track of me and make sure my development is on schedule.  Well I got to meet my case worker and physical therapist today, and they were both very happy with my development.  Even rating me on the 4-month grid (and I won't be 4 months old for another 16 days), I scored great.  So, we're off to a good start.

And there's yet one more piece of good news this week -- mommy finished my book!!!  She has been working day and night for weeks on end, and it's finally ready to go to the publisher.  So keep a watch -- they should be available in about 2 months.

Wednesday, August 18, 2010

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. 


Thursday, August 5, 2010


It is August 5, 2010... my three month birthday!  Mommy woke me up at 3:30 a.m., but it had nothing to do with this.  It was time to eat, and it would be the last time I could eat until after my MRI later in the morning.  Around 6 a.m., she woke me up again, got me dressed, and we headed to the children's hospital.  Two hours later, the nurses took me to my destination.  They put me to sleep with a little mask filled with a gas anesthesia, and I handled it very well.  I was out for about two hours and when I woke up, I felt pretty good.  I was STARVING though!  Had myself a nice breakfast and went back to sleep.

Ok, that was the easy part.  Waiting was the hard part.  We are so very lucky to have a doctor that really cares about me, and she went out of her way to get the results to mommy and daddy before the written report comes out tomorrow.  So here are the results... the radiologist found one spot on my brain.  According to the doctor, it is "very small and very faint," and it is in or on the amygdala.

What does this mean?  Well, first and foremost, I suppose it means I have Neurocutaneous Melanocytosis (NCM).  That is what they call it when the kind of pigment and/or cells that form(s) a nevus end up on the brain or spine.  While this can be very serious, I am still very fortunate because it appears that what I have is the asymptomatic version of NCM.  The doctor said the spot is not pressing on anything or blocking anything, and because of this and its location, I should never develop symptoms or have any problems.  I will need to see a neurologist to verify this prognosis, but we've already had a second opinion from our surgeon in Chicago, and he agrees that we should not worry about this spot.

All in all, this is good news. Our wonderful doctor is working hard to find us a neurologist who knows about NCM, and to get us an appointment right away.  So, while this is not the result we were all hoping for, it is the next best.  Thank you to everyone who sent happy thoughts and prayers.  I am so lucky to have all of this love in my life.