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On Friday, June 27, 2008, Andy had his first seizure. His second came in the ambulance, his third and fourth in the ER. He had so many over the next 36 hours that we lost count. He was 19 months old.
The first few days in the hospital remain a blur of doctors, nurses, and tests. The best hypothesis: a virus had snuck into his brain.
Despite mega doses of multiple anti-epileptic drugs, Andy was seizing more than three times an hour. As a last resort, he was put into a therapeutic coma. Afterwards, Andy could barely hold up his head, and could no longer talk or make eye contact. But the seizures had stopped. We thought the worst was over.
The hospital stay lasted eight weeks. Over the next few months, Andy made incredible progress. He started to crawl, then walk. He slowly regained words. He began to seem more like himself.
And then the seizures returned, and the progress stopped. Seizures struck daily and knocked him unconscious and un-breathing. We did more tests. We got second, third, and fourth opinions. We added medications, and struggled with the additional side effects. We tried a modified ketogenic diet. Then neurosurgery. More medications, new medications, new combinations of medications. A number of alternative medicine approaches. So far, nothing has worked.
The seizures persist. They are far too frequent and intense. His sleep remains poor; his developmental progress is extraordinarily slow; his behavior is becoming more and more of a challenge. Though he grows physically (and oh how he grows :-), he remains developmentally a toddler.
Despite it all, Andy is adorable and charming; sweet and loving, and brave beyond words. He delights in playing with puzzles, bubbles, and anything involving balls. He is constantly in motion. He loves his brother and is fiercely loyal and loving to family and a few special friends. He bears the seizures, the doctors visits, the meds, the blood tests, the therapies - all with incredible spirit.
Every day we wish for something, anything that will make the seizures stop. For Andy, and for so many like him, we need to find a cure for epilepsy.
2017 Annual Update
Happy 11th birthday Andy!
We’ll start with the bright spots of the past year. Andy’s passion for shooting hoops has continued. As a bonus, he now he enjoys watching basketball on TV — making our weekend TV watching a little more diverse than Clifford, Clifford, Thomas, Clifford. He has been getting stronger again, enjoying walks through the woods and around the block, never happier than while helping to walk our friends’ dog around the block. FaceTime lets him “see” his grandparents nearly every day. And he has an incredible team of nurses, doctors, teachers, therapists, sitters, and friends who adore him, and who work together with such passion to help keep him safe and happy and engaged.
That said, I’ll be honest, this was not a great year. Andy’s typical seizures still hit with their usual frequency and fury, and 2017 added a new, particularly difficult type of seizure into the mix. These “tonic” seizures drop him to the floor with no warning, and are happening 5-10 times a day. True to form, Andy shakes them off and never complains, but he’s at such a risk of falls and injury that we really can’t be more than an arms length away. We’ve tried multiple new medications, including the much talked about CBD (the non-THC portion of marijuana that has been in the news as a lifesaver for some kiddos with epilepsy), but have yet to see any benefit.
I went to a really interesting panel discussion on future trends in epilepsy research this fall, hosted by CURE and facilitated by Andy’s amazing epileptologist at Children’s Hospital. Though the pace of progress is far too slow, there are a number of promising research initiatives underway. Which is why, this year as in years past, we will be giving a donation to CURE (Citizens United for Research in Epilepsy), and we hope you will consider doing the same.
All our best for a happy and healthy holiday season.
Steph, Gregg, Matthew, and Andy
2016 Annual Update
Happy 10th Birthday, Andy!
Another year, another update. Over the past 12 months, we’ve seen more specialists, tried new mixes of medications, and experimented with new diets. We’ve started some additional therapies and different approaches to learning. We’ve entered more research studies exploring the idea of “explosive epilepsy” and the relationship between epilepsy and autism.
We’ve celebrated little victories. Andy had multiple seizure-free weeks interspersed over the course of the year! A shift in med mix did help take the edge of some of the unpleasant side effects. For a few glorious weeks this fall, he actually slept through the night AND past 5 a.m. We’re helping Andy learn to use an iPad to communicate some basic needs/wants, both at school and at home. He also now has music group and adaptive gym class nearly every day at school—a double win because he both loves these activities and is at his best during them in terms of engaging and communicating with others.
That said, many of these victories have been held in check by the subsequent steps backward. Each mini seizure-holiday has come to a crashing halt. The disrupted sleep remains brutal but for those brief honeymoons. Andy’s language has dwindled to only a handful of words, and he remains at toddler-level of development. He’s enthusiastic and happy and snuggly one day, but then uncomfortable and agitated the next, and there’s never a clear reason why these things seem to change on a dime.
Yet we remain optimistic. Not because we think that Andy’s seizures are going to suddenly stop, or his autism behaviors will disappear (though we’d welcome either or both with open arms!!). But instead, because the community around us—of doctors, nurses, teachers, therapists, friends and family, students who volunteer as buddies, and even strangers who offer help—continues to embrace and support us. And perhaps more importantly, because so many of these people, both individually and collectively, dedicate so much time and effort to shaping a world in which Andy and others like him can continue to live a safe and happy life.
So here’s to Andy, and the hope that the next 10 years bring fewer setbacks and more victories. In honor of Andy’s birthday, we will be making a charitable contribution to CURE Epilepsy, as we do each year, to help fund research that has the potential to dramatically change so many lives. We ask that you also consider a gift to honor not only Andy, but the 65 million people affected by epilepsy worldwide. Please click on the "Donate Now" button to give a gift in honor of Andy.
All our best for a happy and healthy holiday season!
Steph, Gregg, Matthew, and Andy
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