What the heck is the amygdala??

Well, this week has been a little tough.  We have gotten news that we have been praying we would not hear since the day Zac was born ..."we found a spot of melanosis in the brain area".  Hearing such a thing could only mean one thing...Zachary has NCM (neurocutaneous melanosis).  Before you go googling NCM to get one step ahead of me and 'try' to educate yourself on NCM - please don't.  The internet is not always your friend and in cases of  NCM, such a rare disorder, it most certainly is NOT your friend.

Let me tell you what I do know about NCM - and tell you in normal people terms what I understand it to be.  When a child is born with nevi - particularly those that are large or in Zac's case, giant, there is a small chance of them having the same melanosis 'inside' the body.  Sometimes it can be found in the brain; sometimes it can be found on the spinal cord.  What can happen if melanosis is found inside the body....well, lots of things.  Seizures, hydrocephalus, leptomeningeal melanosis, even death.  I have heard that mentioning that your child has been diagnosed with NCM to someone who understands the disease gets you one of those sighs...followed by a sympathetic glance.  NCM is something no one wants their child to have.  So...how did we get here?

When Zac was 2 1/2 months old, he had his first MRI to scan his head and back in search of things that don't belong there.  When the scan came back, we were told that though the scan looked clear, there was a spot that was clouded - most likely from Zac moving during the MRI... (hmmm....wasn't he asleep..?).  Our dermatologist did not think there was a cause for concern though.  Bruce and I were a little uneasy that we a) just put our son through an MRI and sedation  b) paid a huge amount of money and c) still didn't feel like we had results that were 100% since there was an unidentifiable portion.  A couple months later while visiting our dermatologist, I asked for a copy of the MRI.  There, in plain English (and trust me, most of the MRI was not in plain English) it talked about the unidentifiable spot and said that we should think about repeating the scan in 6 months because the unidentifiable area was located in the amygdala-the most common area for NCM!  Well...my Mommy alarm really went off then.  I had a gut feeling that we should take a closer look.

The wonderful thing about Nevus Outreach is that we were able to send them a copy of Zac's MRI and they forward it to Dr. James Barkovich.  Dr. Barkovich is an extremely gifted pediatric radiologist who specializes in detecting NCM.  After sending a copy of Zac's MRI, I received Dr. Barkovich's results yesterday to learn that Zac has a 3mm parenchymal melanosis on his right amygdala.

After reading this report, I went through every emotion you can think of...sadness, fear, confusion, panic...but after talking to many people, from my fellow Nevus moms to our pediatric neurologist, what I am finding is that melanosis on the amygdala is actually quite common.  The amygdala is evidently, one part of the brain that doesn't really serve a specific function and most NCM remains asymptomatic.  Zac's is very small (3mm) and this morning, our neurologist even went so far as to say he believes Zac is developmentally advanced.

What does this all mean?  It means we pray.  It means we hope.  It means we choose to stay positive that one day, the initials NCM won't stir up the worst kind of fear in nevi wearers.  Though I am not going to lie... this tiny little spot will always be in the back of my mind.  I am choosing to believe that Zachary's inside spot will remain asymptomatic and put my trust in God that he will hear our prayers and keep our little guy healthy.