Friday, January 11, 2013

Kid O' Mystery...

Things are going well for Luke.  We're still working with his neurologist to find the right level of medicine.  He had a little seizure last Sunday morning so his medication was increased again.  If this doesn't do the trick we may be adding another medicine to the mix soon.  We're back to working on counting our days of being seizure free.  It's nice when I can count in weeks as opposed to days.  It will be even better when we can count by years!!  Crossing my fingers that we are on that path.

We met with Luke's neurosurgeon, Dr. Limbrick, last week.  I tried to cancel the appointment because he was on call when we were in the hospital and I didn't think he would have any new information to tell us.  You'd think that I'd learn never to let my guard down!  I feel like we learn something new about Luke's brain too often.  I *think* we are at the point now that we're all caught up.  Dr. Limbrick wanted to talk to us about his minor concerns over Luke's cavum septum.  Technically it's called his cavum septum pellucidum (CSP).  Everyone is born with this but it normally goes away in about 85% of babies between three and six months.  Well of course, Luke is in the 15% that didn't go away!!  

In the picture it shows what a 'typical' brain looks like and what a brain with CSP looks like.  Well, that's not what Luke's brain looks like.  Even rarer still (of course) the CSP is enlarged.  What does that mean for Luke?  No one really knows.  The concern is that because his CSP is enlarged it could be creating pressure on his ventricles and restricting flow spinal fluid flow.  He has mildly enlarged ventricles and if the enlargement of the CSP is decreasing or restricting flow of his spinal fluid it could cause problems like headaches, irritability, seizures, etc.  The real concern is that Luke's head is still growing.  It's normal to still be growing but it should be slowing down more than it is.  At this point - as far as we can tell - it's not causing any major problems.  But the restriction of the ventricle flow could be enough to be causing his head growth. 

What do we do now?  Why we wait of course!!  We'll have another MRI in 6 months to check the growth of his head and any other changes.  The good news is, his CSP hasn't grown since he was 12 months old.  So the likelihood of it growing more is (hopefully) slim.  If his head is continuing to grow too fast or if anything else becomes  'problematic' then the neurosurgeon will do a procedure called an endoscopic fenestration.  This is a procedure where a camera is inserted into Luke's brain and the fluid in his CSP is drained thus removing the possible strain on his ventricles. 

Honestly, I don't feel like it's going to come to that...but I'm not trusting my 'mom-gut' so much these days so who knows.  I did ask for reassurance that we're now totally and completely caught up on ALL of the possible problems with Luke's brain.  For  now, we'll focus on getting his seizures under control right now and see what happens in six months.  We're getting close to being a week seizure free again.  Yay!! 

Development continues to be fantastic.  He is being transitioned into the three year old room at daycare.  I heard him count to 29 the other day in his crib.  He is really, really trying to run.  AND he is starting to use the potty!  I wasn't even thinking of tackling that until this summer but he's shown interest and has gone a few times.  This situation is also GREAT for Ben because somehow every time Luke uses the potty they BOTH get candy.  Hmmmm?  We have his diagnostic testing with our school district in mid February and then we'll do his IEP.  Time is moving so quickly.

Hoping for lots of days/weeks/years without seizures!!!  Take care!