It all began in early 2007, when Michael’s Mommy noticed something strange going on. Every so often, Michael would twitch inexplicably in a manner that was similar to what someone does when they’re startled. He did this throughout the day at random intervals, and it went on for several weeks.
She contacted the doctor and explained her discovery, but he dismissed it, basically saying it’s probably nothing.
But Michael’s Mommy knew there was more to this. She was determined to show them what she meant.
So one day she set up the video camera, and caught this (it happens at about 22 seconds in, and it’s rather subtle):
She emailed this video to the doctor, who did a complete about face on his earlier opinion, and suggested we send a copy of that video to a neurologist, which we did.
A few days later, Michael had an appointment for an EEG.
All of this is documented here in a post from March of 2007.
As a result of the EEG that Michael had, he was put on Depakote, with the hopes that it would help his brain grow out of that particular brand of seizure, and prevent it from developing into full blown epilepsy.
Every single day for the last two years, we’ve had to give Michael two daily doses of this medicine. It comes as a capsule, but because he’s too young to swallow such a pill, we have to take the thing apart and sprinkle it on something. Ice Cream. Yogurt. Pudding. Whatever substrate we can find to hide it in and spoon it into his mouth. And he’s always been really good about taking it, which made things a heck of a lot easier.
Just last week, we had the two-year follow up EEG. It was what they call a “sleep deprived test.” That is, Michael had to stay up until 10:30 the night before, and then be awakened at 5:30 the next morning. It was just as much fun as it sounds. Here are two groggy parents schlepping into the hospital with one little Energizer Bunny who’s bouncing around like he’s been given a bolus of caffeinated sucrose. Needless to say, he handles sleep deprivation a whole lot different than either his mom or I do.
I won’t bore you with a lot of details, except for one little slice of the experience: The technician who was doing the procedure asked if we could have Michael lie down, close his eyes and hold still for ten minutes. Was she serious? If I’d had my wits about me, I would have asked her if she’s ever actually seen a five-year-old boy.
All in all, the thirty-minute test went well. Michael behaved himself just fine and they got the info they wanted.
The best part of it came two days later, when the doctor’s office called and told us that his EEG was normal, and that our next step would be to start weaning him off the Depakote, so that in just a few weeks, he’ll never need that medicine again.
So I’m using this space to issue a HUGE thank-you to my wife, who had the instinct to notice something was wrong, and the persistence to keep pushing the issue forward until she was heard by the professionals. As a result, Michael will live a normal life, as if it had never happened.
What I noticed was a return of an infant startle reflex in a 3yo. Just not normal to see the arms flail out and fingers separate in a 3yo. I have been a nurse long enough and know that sometimes doctors don’t believe what they don’t see. The best advice I can give anyone is to follow your gut instinct as a parent. You are an expert on your kid and if there is something bothering your or something that you feel is being ignored then find someone who will listen.
@wife — Excellent advice. Thank you for pointing that out: follow your gut and find someone who will listen.
Also, even family told me that I was making more of something than it really was. It is sooooo important to follow your instinct and be your child’s advocate.
I am so happy for Michael that he is being weaned off the medicine and his EEG came back normal. Because of MichaelsMommy and MichaelsDaddy, Michael will lead a healthy, medicine-free life. Yeah for MichaelsMommy! MichaelsMommy also gave the best parental advice I have heard in a long time. Sometimes parents rely on the professionals way too much and not enough on their instinct and common sense. Parents can use professionals as a crutch. I had two sisters who suffered from epilepsy and medication is essential everyday or the seizures will hit you and it can disrupt everyday life in a major way.
I had to smile at the image of Michael as the Energizer Bunny and his sleep deprived parents. You probably would have been better subjects for the test. And you’re so right; keep a five year old quiet for 10 minutes? She had to be kidding.
Again, I’m happy for all of you.
Great testimony with the very best of outcomes. So relieved to know this event will be remembered in a blog post and not a part of your everyday.
That is fantastic news! I am happy for all of you.
That is fantastic news!!!
Can I jump in here, you too? ha ha
I have seen many cases of parents who’s stick-to-it-ness is rewarding in the end like this. I’m so glad that you thought to set up the video camera so the doctor could actually SEE this happen in Michael’s “natural environment” rather than, I imagine, sitting in the doctor’s office just waiting for him to do that.
Exciting news!
@surprised — Thank you; it’s a huge relief to know that the condition was caught before it could progress.
@Chuck — I figured since I wrote about the beginning in 2007 I should write about the finish as well.
@WeaselMomma — We’re very happy too!
@Liz — It is good news. Glad you dropped by!
@Melisa — again, I have my wife to thank for being determined and using technology to capture the event and prove it for all to see. We’re also fortunate that he had two of those little seizures during the first EEG, so the doc could see it’s unmistakable.
Great news. I am glad Michael can start getting off the medicine. Moms always know best. Remember that.
@Otter — Wives always seem to know best too. Hmmmm… how do they do that?