So Connor has apparently decided that he enjoys giving me mini-heart attacks on a regular basis, because he had another seizure this morning, and guess what I was doing?
Yep. Driving again.
This time we were on our way to the library, and were luckily right next to a parking lot, so it was only a matter of seconds before I had him out of the wheelchair and was in position for mouth-to-mouth, which I did for a couple of minutes this time. I took him home afterwards-- so much for story time at the library-- and he took a four-and-a-half hour nap.
So I've taken the time to consult my records (what, every parent doesn't have a huge Excel spreadsheet they use to record significant medical events and medication changes in their kid's life?) and tallied everything up. let's review the numbers, shall we?
Seizures In 2008: 15
- number of those occurring after diagnosis of epilepsy: 1
Seizures in 2009: 11
Seizures in 2010 so far: 28
-number of those occurring since July: 15
So in other words, in the past seven weeks Connor has had over a quarter of all the seizures he's ever suffered: an average of one every three and a half days.
Not good.
After talking with the hospital last night, I spent a good portion of today believing that until we got up to a therapeutic dose of the Lamictal to see if it was going to be effective there wasn't anything additional we'd be able to do. Connor won't reach a therapeutic dose of Lamictal for another three months due to the extremely slow titration schedule the drug requires. So basically I was steeling myself for another stint in the ICU, because the way things have been accelerating that was the only way I could see this ending up.
But I talked with the hospital again early this evening, and our neurologist decided that he can potentially add a bridging medication to Connor's regime if necessary until he's up to a therapeutic dose of the Lamictal. This would mean that Connor would be on four seizure medications and would probably be a zombie as a result, but we can handle him being a zombie for three months if it means that he's not going to end up with brain damage from the whole not-breathing-repeatedly thing.
I have no idea where this leaves us for school as of yet. School starts up for Connor in two weeks, and I'm really hoping by then that he's not having a seizure every three days (or every day, as of the past three days) because if he's still doing it that's probably going to seriously complicate things.
Keep your fingers crossed for us that we'll get this thing figured out soon.
~Jess
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5 years ago
8 comments:
Hi. Jess, I can't even imagine how terrifying that is. I REALLY hope that bridge medication works, even though I know what you mean about adding another med to his meds.... It ultimately seems like a necessary thing, as those are some scary numbers.
I hope you guys have a seizure-free weekend and that you do something nice for yourself.
[Hugs]
Ellen
The fourth med sounds like a good plan- if it can stave off the seizures until the Lactimal is up to the full dose, then it is worth it! Here's to a calm, boring, and totally seizure free weekend.
Just sending lots of love and prayers.I am so sorry.Pam
Like Ellen wrote, I cannot begin to imagine how terrifying that is. Sending prayers and hugs and hoping tht the bridge medication does the trick.
I am sorry to read about how frequent Connor's seizures are right now. I HATE seizures. I hate when I notice "Hey, we've gone 16 days without a seizure" because that ALWAYS seems to cause her to have one. I hope the bridge medication works. We tried Lamictal and ended up in the ER with that horrid rash, so you are one ahead of us on being able to use it. I am told it is a GREAT seizure drug. We used Clonazepam as a bridge as we weaned onto Trileptal recently. It did make Emily a zombie, but it prevented seizures. I hope Connor gets to start school!
I totally understand the terror of having your son try to die on you while driving. It only happened to me once (mostly because I just didn't take him anywhere), but I relive the memory when I read about your similar/recent events. You're right though to carry on with your life because otherwise you and Connor would miss out on a lot of fun (excluding seizures, of course). You are a brave woman with adrenal glands of steel. I'm glad to hear that there is such a thing as a bridge medication. Maybe, just maybe, it'll be the difference. Wishing you some recuperation and relaxation.
Jess-
I'm a long time reader, but first time commenter....There is a website www.seizuretracker.com that allows you to track seizures, triggers, meds, etc...you can run reports and charts. This may allow you to easily identify patterns of Connor's seizures. I've used the site for a while now and it has helped us greatly. We've just recently achieved seizure control after daily seizures for months and months. Seizures suck!
I'm so sorry that you're having so much trouble getting Connor's seizures under better control. I balk at kids on so many medications and wonder how the doctors can really tell whether or not what is working and what isn't. My daughter often became WORSE on certain medications and then would stablize. It's hellish, to say the least and I'm wishing an easier road for you.
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