Staying Ahead

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It’s hard work being five years old.

I haven’t posted much about seizures lately because things were going so well, I certainly wasn’t going to be the one to jinx it all. Without a doubt, 2013 has been Liam’s most comfortable year in regards to seizures.

The year started shaky as we got used to intervening with either versed or diastat daily but in May all that changed when Liam had a seizure that lasted close to an hour.

It lasted through the hemming and hawing of a night nurse who no longer works here not waking us up until it was way too late. It lasted through the ambulance ride to the hospital. It lasted through multiple medical interventions by ER and PICU docs. It lasted until Liam, already given multiple IV doses of Adivan was given a loading dose of phenobarbital.

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And then, as quickly as it all began, it ended. Defeated by dose after dose of sedation and more than exhausted by the electrical storm in his brain Liam lost consciousness. He would be discharged from the hospital the next morning without any other symptoms present.

Liam wouldn’t wake up for three and a half days. Sadly, we’ve seen this type of thing before (actually on more than one occasion we’ve had to medically induce a coma for weeks at a time.) We weren’t surprised as we knew how long the half life of all the phenobarbital he took was but it was starting to concern us. On day four Liam woke up and though he was groggy for another 12 hours, he was, in essence, none the worse for wear.

I’m sure that both Karin and I were marking the days in our heads but niether of us would say it out loud for at least a month in fear that talking about it would end it all.

A Month?!

A month without any seizures. A month without even the twitches and other signs of underlying seizure activity, and then one month turns into two. Two into three and before you know it an entire summer has gone by without a seizure. It would seem that a near overdose of anti seizure and sedation meds worked as what we like to call Liam’s “reset button”. He was awake more, he was more attentive at his school programs. He was alert and active (and now I’m all out of a adjectives for this alliteration).

We’ve had to medically intervene with some seizures lately. I’m pretty sure it’s been four times in the last 6 weeks. 4 times last year would be a day and a half so I’m certainly not complaining. It’s the start of something bigger though so it’s time to make a change.

The thing is, it’s never going to stop chasing him. It will always catch up. Whether by weight outpacing recommended doses or side effects outpacing the benefits, be it seizures or their “treatments”, nothing lasts.

It’s time to make a change.

What we are seeing now are signs that these are no longer tonic-clinic seizures but Liam is back to what we used to call “infantile spasms” but now due to his age, the neurologists call them “epileptic spasms”. Of course most of his current medical cocktail are ineffective against spasms and so after a phone call with Liam’s neurologist this morning we’ll be re-starting a med that proved itself early on in Liam’s life. We’ll get an appointment to go into the office next week to start weaning off of some of the other meds he’s currently on but for now we want to get ahead of this.

Liam needs the head start because while five or six big tonic seizures a day last year was hard, the thirty or forty spasm attacks a day when he was an infant was even harder.

I hate every single seizure med and treatment that Liam had ever tried, but I hate the seizures more. So when they bob we’ll weave. When they zig, we’ll zag. I’m not happy about changing Liam’s medical regimen but I’m hopeful. Hopeful because this treatment has worked before and he’s been off of it for a few years so hopefully it’s still effective.

We’ll see.

3 comments

  1. Well shit (I hope you don’t mind if I curse) and damn. I hope and pray that the cocktail that worked before will work again. If not, you know what I’m suggesting, right?

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