Tuesday, January 1, 2013

on being wrong, starting a new year, and eschewing medication for now


on being wrong


On December 13, I said that Robbie had another seizure. I had described it to the neurologist, who said it sounded like a textbook partial seizure. We were all pleased to know that the data would show up on the EEG.

Except it didn't.

Because it turns out that my boy is just a bit quirky in the middle of the night, and those quirks look a whole lot like seizures. Yes, the first seizure was legit. It was a terrifying grand mal seizure. But it's the only seizure he's had so far.



on starting a new year


We've loved 2012. God has given us far more than we expected or deserved this year. We have a new house after an unexpectedly fast sale, a new child after a miraculously fast international adoption, a new start in public schools after a crazy assignment process, and a handful of new diagnoses in our family as a result of that adoption and that scary seizure in November... all of which were unexpected.

As exciting as 2012 was, I've never been so thankful for a new - and hopefully boring - year. The last one just about did me in.


on eschewing medication for now


The biggest question about Robbie's epilepsy has been about medication. Well, we are taking the doctor's advice and waiting on that for now. While we're about 90% sure about this epilepsy diagnosis and are closely monitoring him for another seizure, we're being cautious about medicine, because the side effects of seizure meds can be more problematic than the occasional seizure.

So we wait.

After the next seizure, the plan is to go ahead and start administering the prescription that we've already filled and that sits in our medicine bin waiting to be used. For now, we're surprisingly at peace about the same waiting that had us on edge only a few weeks ago.

This eschewing medication thing isn't just about Robbie, though. I'm currently in remission from rheumatoid arthritis, thanks to Remicade. The drug requires thousands of dollars of medicine every seven weeks, administered via IV over a period of three hours and necessitating a scramble for childcare each time. I'm sick of it.

That said, it's been a wonderful drug for me. I wouldn't just stop taking it out of weariness. However, I had to delay my IV for two weeks due to illness, and I've realized that I would usually be in pain by now. I'm not. Depending on the study you consider, 20% to 55% of patients who achieve remission with Remicade can stay in remission for at least a year without it.

So we're waiting to see what happens without drugs.

My doc doesn't completely love this idea. We know Remicade works for me. We also know that stopping and restarting Remicade often doesn't work, as my body will be likely to reject it if we try it again. However, my doc respects our decision. Furthermore, if I do need to stay on biologic medication, I would prefer to switch to one that I can inject myself at home.

So that's the plan for now. Let's see what God has in store for us in 2013!

2 comments:

  1. Shannon, my dad has been injecting himself with Enbrel weekly for about 5 years, and has loved it. After years of trying different meds (he's had arthritis since his late 20's) it has made a huge difference for him. Anyhow, I know you have great docs and do lots of your own research, but that's just a shared experience I thought I'd throw out there!
    Tori

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    1. Enbrel is probably the one I'll start. It worked in a very similar way as Remicade, and I know other folks who are on it (and some who are on Humira, which is similar too). I don't love the idea of injecting myself, but I'm tired of spending nearly 24 hours each year hooked up to an IV!

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