MRI results

Hippocampal sclerosis dysplasia.  There are a few more words I’m missing with that diagnosis. Our neurologist repeatedly it several times on the phone but it was such a mouthful. I couldn’t quite keep up.  

I may not have caught the whole name, but I got the impact. Finn has scaring on his hippocampus. The center of his brain in charge of language, memory and controlling the right side of his motor function. 

Finn’s not epileptic. But this diagnosis holds a promise of developing an insidious form of epilepsy.  With each seizure Finn has the damage to his brain becomes more pronounced. The pathways in his brain wire stronger to promote more seizures, causing more damage.  As his brain grows so does his risk of seizure. 

As seizure begets more seizure we will come to a point where our only option to function is to remove the lobe of Finns brain that is damaged as his seizures will become resistant to medication. 

We’ve been promised that’s the path we are headed towards.  To try to prevent that outcome we can put our little guy on a daily seizure medication or we can operate (the later is not something the neurologist wanted to pursue yet) 

A ‘mild’ medication. On a low dose. With the hope that it will keep at bay this cycle of brain damage. Even with the medication we could be heading towards brain surgery and removal of a lobe. 

I’m very weary to introduce medication. He’s so little. I worry about the common side effects of depression, anxiety, and suicidal thoughts among others. What will that even look like in my toddler? What lasting effects will it have on his development.  Finn will need medication for the rest of his life to try to stall this cycle of damage. 

This type of brain scarring is extremely rare in children and we aren’t sure how it developed. He could have been born with it. He could have developed the scarring during his first seizure, which is also doubtful. His first seizure showed all the signs of that tissue already being scarred. 

We can’t really know what the future holds for Finn and how the damage already done to his brain will manifest as he grows. The only promise we got was that this was the best it would ever be. We either maintain or watch him decline. 

It’s possible Finn’s having seizures that don’t look like seizures, though thought to be unlikely at this point. A ‘passive’ seizure would look like frustration & confusion out of nowhere, lasting for a small period and then becoming resolve for no apparent reason. Which for an average toddler is about every other minute during the day. So I’m not really sure how we are suppose to track that. 😳

Ive spent the day calling several places for a second option. I trust, respect and am grateful for the neurologist we have now. But I also want to do everything I can to make sure we are making the right choices for Finn. If we choose to enter into the treatment of daily medication I want to feel more confidence going into that treatment plan, and I feel like hearing from a second respected pediatric neurologist will help instill a bit more confidence in what corse to take. 

We feel pretty numb right now. It’s hard to comprehend how healthy Finn looks and reconcile what’s going on in his brain, and truly trust that it’s possibly devastating and needs action now