Tuesday, May 14, 2013

Medication Increase and a Dirty Little Secret

This little angel had some blood work done a few weeks ago. The neurology nurse called us with the results and said that the tests showed we could go up a little bit on his Lamotrigine. Lamotrigine is a fairly well tolerated drug with very few side effects once you get up to a full dose of it. The problems come while building up to the right dose. It can cause a potentially fatal rash. The way around the rash seems to be building up slowly to the right levels. Owen was on 70mg twice a day and the Doctor wants us to increase by 5mg a week until we get to 80mg twice a day.  So, we increased 5mg at night the first week keeping the morning dose the same. Owen didn't sleep for 3 nights! He was completely nuts all day long. Absolutely zero impulse control! One week passed and he was starting to sleep a little better, but still incredibly hyper all day. Rod and I made the parental decision to wait one more week before increasing again. We are now on day 2 of 75mg twice a day AND no sleep, again. This is brutal! No sleep for Mom and Dad and an extra active child to deal with. It is especially difficult since we know that lack of sleep is a surefire seizure trigger for Owen.

But what is the dirty little secret? People judge. A lot. I know, because I do it too. The Bible is full of verses about judging because it is a widespread human problem. As the mother of a larger than average family, I get a lot of it. I know when I see a child over about 2 years old ( 2 and under I don't expect much from) acting up in public my first thought isn't "Wow that kid must be on a brain-altering drug that makes it impossible for him to control himself!". No, my first thought is usually "Wow, why doesn't that parent keep their kid at home (or in a zoo) until they can learn to control him". Our society doesn't think much of people who have more than 2, maybe 3 kids. Most people think the only reason anyone would have that many children is because they are too stupid to understand how the reproductive system works, "Don't you know what causes that?" "No, I have seven kids, but I can't figure out how they got here". I mean seriously, just because you don't want seven kids doesn't mean that I don't want twelve. So, I have always been very diligent in training my children to behave well in public (if only they did so well at home...). With Owen it just doesn't work. He TRULY has no control over himself between the seizures and the meds. It is very humbling for me to take him places. I can't just keep him home all the time. It's not a once in a while thing like he missed his nap today or is coming down with a cold. it's something we've been dealing with since October of 2011 when he had the 2 1/2 hour seizure. The good news is it has made me much more aware of when I am judging someone else. I am much more likely to think that maybe that child over there throwing the fit has a real reason for acting up other than a "bad" parent.


  1. Having a child behave outside of the norm is humbling indeed. Wouldn't it be nice to be able to put what is going on with them on a t-shirt so people can know why they are acting a certain way? Please be comforted to know that many of us out here have had children with issues and we get it. I have adopted the mantra, "What other people think of me is none of my business." It is a tough one to apply but necessary. What really helps is when people tell you genuinely that they do not judge you but they feel your pain and admire the way you are handling a tough circumstance. Also, it won't always be like this. You will find what Owen needs to calm his seizures and get the rest he needs and you need. Keep up the good work. You are an amazing mom!

    1. I actually just ordered Owen a really cute epilepsy t-shirt! I'll post photos once it arrives. Thank you for the kind words!