We received a call from the school yesterday morning, letting us know that Schuyler was in the nurse's office, complaining about a bad headache. When I went to pick her up, the nurse filled in some of the details, including the fact that Schuyler was saying and doing things that didn't actually make a lot of sense. Schuyler seemed tired and a little disoriented when I saw her, and after we got home, she remained... not herself. She complained about a headache for a while, localized on the right side. By three o'clock, she was fine, but even as the afternoon and early evening wore on, she was clearly exhausted. She went to bed early without protest.
So, yeah. Schuyler had a seizure at school. The usual indicators were there, laid out like familiar road signs.
This one seemed worse than before, however, and it manifested itself differently. I made a call to her neurologist, and when he heard the details, he asked that she be brought in immediately. His urgency got our attention.
The short version is that this new manifestation of Schuyler's seizures convinced her doctor that it was time to put Schuyler on seizure medications. Before, he didn't believe that they were serious enough to justify the issues that come with these meds, which are not usually very gentle on the brain. But now, he's concerned that stronger seizures could cause her brain, in its malformed state, to become "kindle" for the harder grand mal seizures that everyone is deeply committed to avoiding if at all possible.
One of the reasons I like this neurologist is that when he talks ABOUT Schuyler, he talks TO Schuyler. He asks her questions directly, only turning to me when she's having trouble expressing herself, and when he's got hard stuff to say, he doesn't sugarcoat it for her. The conversation, some of it dark, about what could happen if her seizures progress, and about what these meds could do to her, was had with Schuyler first and foremost. I like that. She deserves that.
As we talked on the way home, Schuyler suddenly made the connection between the bad and potentially dangerous grand mal seizures we're all trying to ward off and the heartbreaking seizure she witnessed this summer when one of her friends in Miracle League soccer was suddenly stricken in the middle of the field and had to be taken away, still unconscious, in an ambulance. This thought scared the shit out of her, and I don't remember the last time I saw that kind of fear in her eyes, or watched her cry like that. It was hard to watch, but at the same time, she deserved the truth, and the opportunity to take some level of ownership over this thing. She's scared, but she's taking it seriously, in a way that perhaps she hadn't before.
Meds will be good for her. Now that her seizures have reached this level, her brain will benefit from a little control, and will be able to heal and develop without having to fight so much. The risk/benefit balance has shifted, as we always suspected it would.
As we talked it all out in the car on the way home, Schuyler tried to put herself back together. I knew she was looking for answers to questions that she didn't even know how to ask. Big, scary boo questions.
"Look at me, Schuyler," I said. "Everything is going to be okay. I'm not going to let anything bad happen to you. I promise."
Well, I realize I shouldn't have promised her any such thing. Of course I know that. But I've made much bigger mistakes in than making such a promise to her. And I truly meant it in the moment. Hours later, after much contemplation, I still do.
16 comments:
You will do your best to keep bad things from happening to Schuyler and that reassurance is what she needs. She knows darn-well that that's what you meant! You defend her with a fierce and powerful love! Rob, no matter what happens, remember that fact. Schuyler is a fortunate young lady to have you and your wife as parents! With Heart-felt Wishes for you and your loved ones!
You all have a good doctor, there. Way too often doctors direct their thoughts to the parent, or partner, in rough conversations. (i had that happen after my cancer diagnosis.)
I'm sorry it has progressed, but hopefully they'll be able to dial in her meds fairly quickly.
I think about Schuyler often. She's like a little guardian angel in my journey with Sophie. You had every right to promise to take care of her, just like all parents promise that to their kids. And nobody has any guarantees. I am sorry that her path took this turn and I truly wish her all the best. You are a brave girl Schuyler. Keep fighting your monster!
I know you have a huge community, but if she ever wants to talk to someone about seizures, I'm here...
They suck. They suck so horribly. But then they're over, and the next day happens...
Sending strength.
As heartbreaking as it is, I'm so glad to hear that her neurologist is such a caring person and realizes that Schuyler is the person he is treating, not you. I truly hope the meds help her and keep things in the right balance. It sounds like the neurologist will work with her and you to get those levels right.
So sorry to hear about this latest development. I hope the meds do the job and nothing more than that.
I hate, hate seizures. I've experienced with low blood sugars and one of my kids had a few - devastating to me, though not as much for her.
It seems you'll do everything in your power to keep Schuyler safe -- both physically and emotionally during this difficult time period. Maybe that's all you can do for her, but maybe that's enough sometimes. Glad you're being a supportive dad and you've found a neurologist who demystifies things for patients and their families.
Schuyler is blessed to have both parents and a doctor who are so caring and competent. I echo the hope that the medication will do ONLY what it needs to and without the worst of side effects.
I'm really sorry to hear this and wish you an easy transition.
I have been following you for several years- through internet (staulking? LOL), you book, blog and videos. I have also directed your information to school professionals. All this because we have a 9 year old daughter with the same diagnosis in 2007. Our Jenna even looks like your daughter. I kind of use your life with Shuyler to forecast or trail blaze ours in a few years. We now ave Jenna with a "talker" and i have these cool neckerchiefs to help with the drooling (S uses wrists bands I see) since J drools more prfoundly. We have not seen any signs of seizures yet but as I hear your story I now realize it still ay come (i thought we bet the abnormal EEG). :(. Thanks for posting your life. Thanks to Shuyler for the willingness to ave it shared. If she ever wants to be a mentor to our Jenna, we would be open to it. Krista in Wilmington, NC. Doublemom@gmail.com
So sorry to hear about the setback. Do you realize how awesome of a young lady you have raised? I'll say an extra prayer!
Thanks for sharing the story. I only saw a little reference to the school seizure on Twitter and wondered how you were all doing. You'll be in my thoughts.
Rob, you make no mistake in telling Schuyler you won't let anything bad happen to her. You won't. That doesn't mean nothing bad will happen, just that if it does, it will have happened without your approval. Schuyler, I wish you all the best: you have always been a special lady, one I would have been proud to call my own little girl.
Rob,
I am sorry to hear of the latest challenge.
I've been a silent follower for years and have much respect for the three of you. This particular post makes me want to comment.
Just as the neurologist is honest and direct, so too are you - with Schuyler and readers. I have to imagine that a father's primary goal is to make his child feel loved and secure. She's old enough to know what people can do. In my opinion, though, all people have to be reminded of love and security, especially in challenging times. There are no words that can express the degrees of love or the extent to which we will go so we have to make do with the ones we have. I believe that's what you did, and you were as honest and direct as one can be. For that, I would think she is grateful.
Wrapping you all up in a hug.
I'm pleased that Schuyler has a good doctor, and also that she was able to understand what exactly it is that she needs to take the medication for.
Anticonvulsants have a terrifying set of side-effects, but most of them are rare. "Mood changes" is the one I'd be most concerned about given your tendency to depression, which you think Schuyler has inherited.
I don't have epilepsy but am on two anticonvulsants, one for bipolar and the other for neuropathic pain. Like all psychoactive drugs, a med which happens to work wonders for mood stabilisation for some people can make others far worse. I was on a certain anticonvulsant for precisely 7 days before I started getting horribly depressed (despite also being on two antidepressants and a mood stabiliser), and on the 8th day I wanted to kill myself. That's the sort of thing I'd be concerned about in your position.
It seems to be normal for anticonvulsants to cause a bit of mental slowing, sleepiness, and low-level depression symptoms at the beginning of a new dose, but in my experience, this clears up within a couple of weeks. The thing you need to look out for is major depression, extreme unhappiness, or very great fatigue. That's when you "go straight back to the doctor, do not pass GO, do not collect £200" :)
Good luck!
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