Wednesday, March 21, 2012

Spike-free Spike!

Spike returned to Duke today for the all important follow-up appointment to his EEG test of last week.

Spike has been so healthy and happy lately that I wasn't really anxious about the outcome of the test. So why then did a huge wave of emotion wash over me when Dr. Mikati came in and said "Spike had an excellent EEG last week!"? A weight I didn't even know I was carrying just dropped away. I missed the next couple things the good doctor said and I had to ask him to repeat them to make sure I understood it all.

Now I am no epilepsy expert but I'll do my best to explain what an EEG can show with regard to seizures. There are three indications of potential trouble. The first is "slowing" which I interpret as sort of the background against which the other issues are painted. Spike has always shown some slowing since his first EEG. The second issue is "sharp" points to some of the waveforms. I believe these are slight, short disturbances in the waveform. The final concerning condition is, believe it or not, "spikes." The spikes, I think, are clear indications of seizures or at least the likelihood of full seizures. The spikes are our greatest concern because they indicate that seizure activity is still present.

All of Spike's previous EEG's showed slowing, sharps and spikes. Even the one recorded last June when he was enjoying several months of seizure free activity showed problem areas. I don't recall that it showed actual spikes but it definitely recorded slowing.

Last week's EEG showed no evidence whatsoever of spikes.

Whew!

It did show some slowing and sharp points but the neurologist quickly pointed out (ALMOST quick enough to stop that skip in the parental heartbeat) that he expected it to show that activity. Opening the skull (hope you weren't eating dinner while reading this) apparently disturbs a few things inside (no kidding!) and taking a chunk of grey matter out further mixes up the electrical signals. Apparently, even if Spike had never had epilepsy, brain surgery almost certainly would have resulted in slowing and sharps. Of course, in that case, I'd have a few questions as to why they cracked his noggin! However, Spike did have severe epilepsy and that complicates the picture slightly.

The sharps and slowing may simply have resulted from the trauma of surgery or (and I had to open my big mouth and ask this, not allowing sleeping dogs to snooze peacefully) COULD BE a sign of some residual epileptic activity. Importantly, the doctor does NOT think that is the case and he was very happy with the EEG result.

For the record, Spike has always been Spike. He did NOT acquire this nickname once his seizures emerged. Although his name did lead to one of the best moments of his illness. Back when he was having dozens of full blown seizures every day, he was hooked up to the EEG leads for continuous monitoring. One day, the doctor came in with the actual paper tracings of the EEG to show us what was happening and how he was interpreting the results. He left the tracing with us and Spike asked to see it later. He looked closely at it and then pointed to the spikes and asked if those were the spikes the doctor had been talking about. I said yes and then he asked if that was when his seizures happened. I said yes again. He then lay back for a moment and just looked off into space with the tracing in his hand. He then announced, "From now on, I want to be called Mr. Smooth."

He's smooth all right and so are his brainwaves!

The results today are particularly gratifying given the choices we had to make prior to his surgery. Readers of this saga may recall that the focal point of his seizure activity was very, very difficult to pinpoint. He had literally every test possible to locate the source of seizures but the closest the doctors could come up with was that it appeared to be in the right frontal lobe. At least that's where the activity was showing up. However, there was a very real possibility that the seizures were starting in an adjacent area and simply presenting themselves in the right frontal lobe. Think of it as the spark being in one place and the fire caused by the spark occurring in another. The fire was easily seen but if the spark was outside the area of resection, he could have had just as many seizures after surgery as he had before. We had to make a decision, therefore, about how much of the brain to remove. Remove too little and the seizures would return. Remove too much and he would have a high likelihood of impaired function.

Spike's neurosurgeon strongly advocated for removing as little tissue as possible while some of the neurologists started off thinking it would be safer to remove more. In the end, everyone agreed with the surgeon and he removed as little as possible (still a sizable chunk), risking seizures for a better chance of maintaining function. Today's results validated that approach. Spike's rapid recovery is due, in part, to that decision as well.

Next steps for Mr. Smooth are ... just being a kid.

Spike will go in for evaluation by the school district as to any special needs he may have in school. The need for special attention, if any, is related to fine motor skills. His cognitive and language skills remain excellent. He could also use a bit more focus (what little boy doesn't need a little more focus?) due to slight hyperactivity brought about by the drugs he still takes. Overall, he's looking pretty good.

Speaking of being a kid, every time I have taken Spike on a boat, he has asked if we are going treasure hunting. Due to a large storm a couple of days ago, a bottle magically washed up into our bushes. When Spike opened it, he found a treasure map and compass! When you have a boat, a map and a little kid, you really don't have a choice - you must hunt for treasure. So yesterday we loaded up the boat and headed out on Jordan Lake.

Our good friend Dave came along both for adventure and safety as Spike can get a little rambunctious on board. I have to admit, Spike was extremely well behaved this time out. I'm still not sure I would take him out by myself but he's getting close. Huge thanks to Dave for making the treasure hunt possible.

Heading out from the marina, Spike kept a close eye on the treasure map. He impressed the heck out of me when, upon being asked where we were on the map, he immediately looked up and all around to get his bearings rather than focusing on the map itself. He's a sailor for sure!

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Once he figured out the various clues on the back of the map, we found the secret cove and went ashore. It took him awhile to recognize the X that marked the spot but maybe that's just because it was right in front of him. Once he saw it, he began digging.

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Lo and behold, there was something buried under the X!

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Spike learned an important lesson out there. As we got ready to re-board the boat, I asked him for the treasure box. Once he handed it to me, I immediately ran off into the woods with it. He'll keep a firm hold on his treasure in the future!

Back aboard, he opened the box to find an odd collection of treasures. I'm not sure it was quite was he was expecting.

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Until he opened one of the leather bags and gold coins poured out!

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He was one happy boy as we headed back in with pockets full of loot.

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One minor problem cropped up today as he was talking about the treasure hunt. "Daddy, next time I want to find diamonds. Lots and lots of diamonds!" Oh boy.

Special thanks to Dave, Timm and Rachel for the roles they played in helping a boy's dream come true.








Friday, March 16, 2012

No News Is Good News!

I know that it is far past time to update everyone on Spike's progress but that progress has been so fast that it's tough to keep up with him myself! As you will see in the following photo collection, the kid is often just a blur.

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What appears to be simply an album of a normal kid's life is, to me, a record of extraordinary recovery. Every picture above highlights a milestone on Spike's ever accelerating forward path. Eating normal food, rough-housing with kids, climbing steps, scaling ladders (!), spending so much time outdoors - these are the things kids do. I just never expected to see Spike do any of them. Now, he does all of them and so much more.

Spike is back in preschool and loving it. He finally has the attention span to sit with me for long books. He can, in his own way, write his name. His imagination is wild and incredibly detailed. His energy level is through the roof.

That's not to say that Spike is all the way back on track with his peers. The heavy doses of medication that he is on lead to a special kind of hyperactivity. He is not out of control and running around. Rather, his attention drifts if he does not intentionally focus. When he does concentrate, he can do pretty much anything but, unlike most kids, he first must decide to block out everything else and consciously focus on the task at hand.

His gross motor skills have recovered for the most part. He can climb, run and throw although he shows a certain lack of coordination in many activities. Nonetheless, he somehow accomplishes the task at hand. For instance, he'll skip or canter when he runs but he gets to the finish line nearly as fast as if he were full out sprinting. His throws look odd, but he hits the mark with good force (which puts him ahead of his Dad who just looks funny when he throws and fails to hit anything!)

Fine motor skills are still a work in progress although, again, he can get the job done with extra effort. He can now reliably hold a pencil, feed himself just about anything and pick up small things with no problems. He may not be in line with his peers on each of these activities but, and this is important, he can beat the pants off any of them when it comes to video games. That's indicative of the different developmental paths he and his friends have taken. During the crucial fourth year of childhood development, his friends sat in daycare and preschool all day and learned to write and color and put together puzzles. Spike spent a large part of the year hospitalized and having 50 or more seizures a day. His iPad was his main distraction and he has become an expert on it. You would get dizzy watching him move the iPad around as he plays games yet he continually scores high on the games even though they require precise timing and finger motion.

Fortunately, I see progress every day as we work with him on catching up to his peers on all the other skills. He is engaged in learning, he wants to show off what he can do and he takes great pride in every accomplishment.

The doctors have told us to push him and not let him get away with behavioral lapses or intellectual laziness. Of course it is tempting to just sit back and enjoy all of the natural progress and blame any slowness on the drugs. However, it turns out they are making a different point entirely. This isn't about normal development. After all, he had a large part of his brain removed. Right now, his neural pathways are reconnecting to compensate for the loss (ah, to be young and capable of that!). He only gets one chance to optimize those connections and that chance is RIGHT NOW. Pushing his development apparently helps make stronger and more efficient connections that will serve him well the rest of his life. That amps up the purpose of story time a bit!

His doctors and pre-school teachers have also suggested that we have him tested to see if he is ready for kindergarten in the fall. He has no cognitive issues (ask him to explain the difference between a CAT scan and an MRI and he'll teach you a thing or two!) but his fine motor skills still need work and those skills are important to fundamental tasks such as writing and drawing. Personally, I think we can get him ready but he will go in for professional evaluation in a few weeks. Of course there is also a growing movement to hold kids back a year so that they are the older kids in a particular grade and thus have some "advantage" over the other kids. Personally, I don't buy into that (and it only works if everyone doesn't do the same thing) and I will not agree to hold him back for that reason. On the other hand, if his skills need work so that he is not frustrated in school, I will definitely find another very good program to put him in and either delay kindergarten by a year or skip it entirely if his development leaps ahead during the next year.

Yesterday, Spike returned to Duke Hospital for a follow-up EEG. Apparently this one will be used as the post-surgical baseline for future comparisons. That means that we should not worry much about the particular reading - although a nice, normal tracing would be fantastic (and unlikely given the surgery). Next week, we will meet with his neurologist to go over the results. Spike was, as usual, a model patient for the test. He never complained, he was patient, he was polite and he even fell asleep when they asked him to without the need for any sedatives.

Spike is about to experience another life changing experience. He's moving to the Big Apple! After years of resisting professional opportunities in New York, I finally threw in the towel and accepted a full time position with a major Wall Street firm. I certainly enjoyed working on my own for the past six months but access to quality health insurance simply became too important an issue. I start work at the end of March and Spike will hopefully be up there by late spring. Fortunately (and unbelievably), I found a nice place that is only 20 minutes away from the office (by water taxi - even better!) so I will have lots of time to spend with Spike.

After reading through everything above (I thought this was supposed to be a simple photo essay!), I realized that I left out a very important description of Spike. He is happy. All of the time. He understands what happened to him, he knows that he has to try harder than usual on some things, he feels the effects of the drugs but he is just plain happy with life.

I would like to end on that note and perhaps I should but I cannot. I have very sad news to report regarding another child. Florence McDow is a little angel who lost her earthly battle last week. Sweet Florence fought most of her life against every imaginable condition. Every time she would rally and seemingly conquer one ailment, another took its place. In the end, it was just too much for the little girl. I used to work with Florence's mother, an angel in her own right. When she first heard that Spike was sick, she dropped everything and rushed to the hospital to be with us. She provided comfort, understanding, knowledge and advice that proved invaluable throughout Spike's illness. Our thoughts are forever with the McDow family. You can read about Florence at http://cotaforflorencem.com/

Thank you for following Spike's adventure.