Saturday, December 31, 2011

Walking the halls of the hospital clinic this week, I heard some poor kid's panicked wails echoing off the walls.

"It's going to HURT! I don't want to do it! I want to go home!"

Perhaps somewhat inappropriately, I smiled as I looked down at Spike and said "Quiet down buddy. It's just a blood test."

Spike went through countless blood tests, IV insertions, surgeries, healing, poking and prodding with nary a complaint and now he was screaming about a simple blood draw? Yet another happy sign of normalcy as far as I was concerned.

Go ahead Spike, scream your head off. It's NORMAL for a four year old to hate blood tests!

We were in for a follow up visit with his wonderful Duke neurologist. As Spike and I entered the examining room, the nurse told him that she was going to take his blood pressure. Spike cheerfully declined, saying, "You don't need to check my blood pressure anymore. I am a healthy boy now!" His blood pressure was, of course, normal.

Medically, things could not be better. Although he is not out of the woods yet, every day that passes without any seizures further reduces the chances of them returning ever again.

In three or six months he will have his first post-operative EEG. Waiting for those results will be stressful as any abnormalities could point to potential trouble. Or not. The problem, diagnostically, is that a normal EEG does not indicate that he is cured and an abnormal one does not indicate the seizures will return. Epilepsy is a devious monster that will always lurk in the background but may never show its face again. In fact, at this point, Spike is probably beyond the 50% likelihood of recurrence point - on the good side of 50% for once. Consider that as late as November 8, the chance of him having a seizure in the NEXT HOUR was far greater than 50%!

The doctor did tell us that the longer we keep Spike on anti-epileptic drugs, the lower will be the likelihood of seizures recurring. As I have been vocally anti- anti-epileptic drugs for quite awhile as they were not helping Spike and they were certainly having adverse effects, the doctor took great care in explaining why they keep patients on them so long.

1. The surgery itself may create conditions conducive to seizures regardless of any cure of the original ailments.

2. Some patients who are weaned off of the drugs too early after experiencing no post-operative seizures may suddenly develop seizures that do not respond to any medication OR surgery.

3. There's a lot we still don't understand about epilepsy and the drugs may provide some insurance if the side effects are acceptable.

Well, sign me up for a lifetime supply of drugs then! I will do whatever is necessary to reduce the chance of new seizures.

Of course, I knew this was coming so I was insistent (pushy, demanding, over-bearing) about getting him on an acceptable mix of drugs BEFORE the surgery. The hyperactivity side effects that he experienced from some of the drugs would NOT have been acceptable for a year or longer after surgery. Now he is perhaps a bit happier (in a very slightly drunk sense - not impaired at all, just overly happy) and a bit more hyperactive than he would be without the drugs but the happiness tends to offset the hyperactivity and renders it mostly harmless. In fact, never having raised a little boy, I have no idea what normal is for his age. What's important is that his current condition is more than acceptable forever as far as I am concerned.

The doctor also provided a clear explanation of the pathology results that confirmed my amateur understanding of the report. The malformation in the excised tissue was congenital, meaning that it was present before birth. Something happened long ago in the initial development of that part of his brain that just wasn't going to be fixed or go away on its own. It had to be taken out. Thankfully, we live in a time when that is possible.

Of course, for many children, such solutions simply do not exist. As I was making a follow-up appointment, a family came up with a young boy in a wheelchair along with a seizure dog. The boy smiled at me and I nearly cried. He was alert and aware but obviously crippled by some neurological condition. I'm sure he was there to see the same doctor we had just left and would receive the same quality care that helped Spike. Nonetheless, some random string of events occurring probably before birth left this child with fewer good options. I think about that a lot because I fully expected to be wheeling Spike around myself given how his condition deteriorated throughout the year. My heart goes out to all the kids and families who deal with severe medical issues. I had to take care of my own kid this year. I hope someday I find a way, I hope many of us find a way, to help others in the future.

Spike enjoyed a great Christmas. I'm not real big on Christmas traditions but he has somehow picked up the finer points of the holiday season. He insisted on outdoor lights and he even dragged me out to get a wreath for the door because he said, "You just have to do that at Christmas!"

For the first time, Spike was not the least bit cautious around Santa. In fact, he didn't bother waiting in line. He just marched right up and started reciting his well thought out list of gift requests. Of course, he can blame his lack of inhibition (manners?) on the phenobarbital. Santa understands. I sure hope the poor little girl who was on Santa's lap at the time got her requests in!

We have enjoyed glorious weather the past couple of weeks in North Carolina and Spike and I head out to the woods or water every day. For some reason, he objects to going out every time but I insist and then he has a great time. He runs, kicks pine cones, throws sticks, digs in the dirt, wanders into the undergrowth and basically makes a nuisance of himself. All blissfully normal behavior for a four year old boy.


Yesterday I took him out to the dam at Jordan Lake (the prettiest setting in all of central North Carolina) for some free range running with a playground nearby in case he showed interest. The first thing we did was climb a steep hill to the lookout platform. I run every day and yet I was getting winded about halfway up. He stopped, wiped his brow dramatically and said, "Phew! What a climb!" He then SPRINTED to the top, leaving me in the dust. That's a remarkable recovery less than two months after such major surgery.

For the first time, he also showed real interest in the playground and climbed around for awhile before running off down a newly discovered trail through the trees. His strength may lag his age peers a bit but he is rapidly making up for a lost year of real physical activity. His coordination is also as good as ever.


Even though Spike continues to object before going out every day, I have to drag him home out of the woods as the sun goes down. He pretends to lock himself to park gates and trees and then always blocks my way as a last effort to stay outside just a little longer. He generally wins these battles as I cannot imagine better physical and emotional therapy than being outside on yet another father/son adventure.


On January 2, 2011, Spike suffered his first seizure. That one was the worst by far and still gives me nightmares. As I watched him and grabbed for my phone to call the paramedics, I wasn't sure he was going to survive long enough to get to the hospital. When he came out of it and I raced him to the emergency room faster than the paramedics would have been able to, horrible thoughts crowded my mind about what this all meant. The reality that developed was far worse than all of those thoughts combined. Several times during the year, I was sure we were going to lose him but he just kept fighting back. 3,000 seizures later, Spike has apparently beaten the monster with the help of all the medical professionals on his team.

2011 will probably always represent Spike's worst year. Right now, it also represents his best but I just know he has even better ones ahead - starting tomorrow.


1 comment:

  1. Welcome to the great side of 50%!

    Allen's issues were LIKELY attributed to either a brain area not developing right, or from scar tissue resulting from a high fever at 18 months. His seizures started in middle school.

    Also welcome to my club--you understand now why you and I cry at seeing another kid suffering .....

    Here's to a great 2012 to all of us.