Cal Jacobson's Blog

Update, July 8th, 2008: where we are, 11 months later.

I don’t update my blog as often as I would like. One reason is that I switched jobs at the beginning of the year. Another reason is that given a choice between playing mindless computer games at night or blogging, I give in to the lure of the former. But I also have a third reason.

Last December 5th, a thief entered my house.

Although the thief wasn’t identified, the authorities assured us that it probably wouldn’t happen again and we shouldn’t worry. We didn’t notice anything missing, and other than the awful scare it gave us things returned to normal.

He returned on the night of March 3rd, sneaking into the bedroom my children shared at the time. He fled soon after being spotted, just like the first time. Again our neighborhood was awash in flashing red lights and sirens, and again the culprit eluded capture or identification. We weren’t reassured as confidently this time, and afterward we sought the best protection we could. My wife’s jewelry and our electronics were all accounted for, but our peace of mind was certainly gone.

The thief returned on May 12th, while I was bathing my kids, prompting me to call 911 for the third time in my life. The authorities were as impotent as before, and we stopped calling for help immediately when he appeared…which was about once a week for the next three weeks.

On June 5th he broke into my home at 2am. His attack on my youngest son resulted in a hospital stay that lasted the better part of a week. When my boy returned home, the thief violated our house at least once a day…sometimes several times a day.

If the thief were human, I would have made sure that after his second intrusion into my home that there would not be a third, period. I wish I could have a physical target for my anger and frustration, but I don’t.

The thief is epilepsy, and it is stealing my 4-year-old son Gavin’s life.

There are many forms of epilepsy, though if you haven’t experienced it firsthand you’ll assume it simply means a violent seizure with lots of foaming at the mouth — something the media breathlessly reported when Chief Justice John Roberts had a seizure at the end of July. Epilepsy isn’t exciting; one of the most powerful men in the United States has a seizure and the story is buried within a day. There aren’t beautiful people from Hollywood championing the cause of epileptics, so why would you know much about it if it didn’t touch your life?

I wish my son had it as good as John Roberts, based upon what I know of that man’s condition.

Gavin used to be a grinning daredevil, tearing around my house and serving as motivation to my older (and more hesitant) son, Seth. Gavin earned the nickname “Otter” because he loved swimming and would jump into the water without reservation. He was furious whenever he couldn’t do something the bigger kids could do, merely because of his size or age, since he was unafraid of the challenge. He began talking at a younger age than his older brother, and often surprised his mother and I at the things he understood. Gav had an aggressive side too — we joked about him going into “Hulk smash!” mode if somebody angered him; Otter would literally lay the smack down with little remorse if he felt he had been wronged.

That was the Gavin I knew up until a few months ago.

The new Gavin sits in his room, in the dark, just staring, if you let him. He fears new situations, and has little interest in going swimming. Sometimes he’ll burst into tears if you just leave the room. And although he doesn’t remember what happens during any of the seizures, he is aware that he is different; a few weeks ago he told my wife “I miss Gavin” and began to cry while saying “I’m sorry I’m such a dumb kid.”

That is what epilepsy — and the numerous medications he’s been on in the attempt to control it — has stolen from my son: the spark that was the old Gavin. One of his medicines, Topamax, has left him apathetic and absent-minded: when we were first ramping up on the drug we had to re-teach him how to eat and use the bathroom. The steroid he must take three times daily has caused him to put on 10 pounds (a quarter of his body weight) in a month, causing him to be more fatigued and bloating his face and body.

The new Gavin has Myoclonic-Astatic Epilepsy, also known as Doose Syndrome. It’s a rare, drug-resistant condition that only 2% of children with epilepsy are diagnosed with. Fortunately, 70% of kids with MAE outgrow it. Compared to some of the nastier (and equally as rare) forms of childhood epilepsy such as Lennox-Gastaut Syndrome (LGS) and Dravet’s Syndrome, MAE is a picnic. But it has been hard on my entire family.

Seth, for example, has witnessed at least a dozen full-blown ‘grand mal‘ seizures. He has struggled with the concept that his brother is sick and his parents often have to drop everything and give Gavin their full attention, at his expense. To his credit, he has been a trooper — he called out from the bedroom when Gavin had his second seizure, alerting me to the problem. For the third seizure, which took place while he and his brother were in the bathtub (I was a few feet away), he tried to keep Gavin from slipping under the water. He seems to be doing well now but my wife and I continue to worry about how Gavin’s condition has affected him.

My wife and I are drained. We’ve been exhausted by days of hovering over Gav when he’s had bouts of atonic (sudden drop) seizures on the stairs or at the dinner table. We’ve been demoralized by days where he has had dozens, if not hundreds, of ‘eye flutter’ micro-seizures and cases where he has just ‘zoned out’ for a while. We’ve been frustrated by a terrible health care plan in the face of $900/month medication bills. And we’re trying to avoid thinking too far ahead, because some of the possibilities for the future are too damn frightening.

We’ve also had to deal with friends and family who don’t know how to react. Some have been absolutely awesome. Others have been rather distant, either due to fear or a lack of comprehension of the problem.

This is why I haven’t blogged as much as I would like. And I’m not posting this as a means to garner sympathy, but rather to shed some light on a side of epilepsy that doesn’t get a lot of coverage. Unless somebody with a lot of fame and money has a child who is suddenly struck by a form of epilepsy, conditions like MAE and LGS will remain unheard of. A coworker of mine who has a child with a completely different (yet also marginalized) medical condition told me that you have to be your child’s advocate, because nobody else will.

In my online research of MAE, I’m finding that to be true. There are a handful of Doose Syndrome-related sites, most of which are abandoned or in a serious state of neglect. I’m assuming it is because the owner’s child either grew out of the condition or it became progressively worse.

The organizations that I would have assumed to be on top of this sort of thing, such as the Epilepsy Foundation, don’t appear to be of much help either. Most have websites that provide a basic overview of the various forms of epilepsy, but I have yet to find one that provides useful, day-to-day tips for parenting a preschooler with the condition. In fact, from what I’ve seen the focus of these organizations is a) fund-raising and b) funding research rather than providing direct support to the people they are supposedly representing. That may be a horrible mischaracterization due to a lack of experience in the land of epilepsy support, but it is certainly my impression based upon their online presence.

That isn’t to say that there haven’t been bright spots: we’ve found some local support groups and organizations here in Colorado Springs which have been incredibly helpful. As odd as it may sound, it is comforting to talk with people who have been in your shoes — and they have been instrumental in pointing us toward other, little-publicized organizations and programs which promise to provide us with financial and emotional support.

Technically, a couple of seizures makes one an epileptic. If you’ve been diagnosed with epilepsy and can count your seizures on one hand, more power to you. I certainly don’t wish to belittle or downplay the folks who fall into that category. But there are a lot of adults and kids out there who suffer from far more serious versions of epilepsy — conditions that can lead to serious learning disorders, mental retardation, and even death. There is no cure, there’s not much publicity, and the side-effects of treatment can be almost as bad as the condition itself if the treatment works at all.

If you’ve made it this far through my rambling stream of consciousness, thanks for listening. If you feel compelled to do something, might I suggest donating to a local epilepsy support group? While poorly advertised on a national level, I’m pretty sure most large towns and cities have at least one — and by doing so you’ll directly support the people who live with epilepsy every day of their lives.

Thanks.

Time for me to go to bed; it’s already very late and the thief doesn’t abide by anybody’s schedule.