Wednesday, November 16, 2011

And still no balance

Will has had 3 seizures in the past week. The first two were on the same night, and Nate took Will to the ER. The third was less than a week later. Will has never had this frequency of seizures before. He never had any before last June, and since that time has been averaging one per month.

We caught the latest seizure early, as we have been lucky to do recently. We administered his nasal emergency seizure medication, but because Will has had so much nasal congestion lately, it appears as though he didn't really absorb any of that. We had to go with the second emergency medication - rectal Diastat. The seizure stopped within 8 minutes of administering it, and Will slept through the remainder of the night.

We were on the phone with the pediatric neurologist on-call during the whole thing. Once it appeared as though the Diastat was working, he had me administer a brief neurologic test to ensure that Will wasn't having sub-clinical seizures that wouldn't be obvious by looking at him. For those of you who thought "neurologic tests" were impressive and difficult to give, forget about it! I just had to pinch the insides of Will's lower arms and tickle his toes - just enough to get a response. If Will didn't respond, then he was likely having some small underlying seizures and would have needed to go to the hospital.

Thankfully he got annoyed with me (in his sleep) for bothering him, and moved all 4 limbs.

This whole situation is frustrating, as you can imagine, and seems to become more impactful with each passing month. It is hard to believe now, looking back, that when we started this CP journey, seizure disorder was something we were thankful we didn't have to deal with. Now it is our predominant concern. I guess situations are always changing and evolving that way, even if you don't want them to.

The neurologist increased Will's dosage of Lamactil by 25%. Just like all the other times, now we wait and see. In the mean time, I took Will back to the ENT to see what was up with the congestion. Will had been sneezing and gagging like the old days, before his adenoidectomy. He was sleeping for less than 2 hours at a time, before waking up angry and unable to breath effectively though his nose. It was getting old to all of us.

Published data on Lamactil shows that nasal congestion is a potential side effect - one that we could live with if the Lamactil was working. But I needed the ENT to determine what we could do to combat the congestion. Will already has a humidifier next to his bed, we spray his nose with saline, he sleeps with the head of his bed elevated, and he has recently completed a course of Suprax - an antibiotic that always seems to work to knock out his nasal bugs.

The ENT scoped Will and determined that he has another sinus infection. He prescribed something stronger and broader than the Suprax, and said we could re-evaluate the congestion issue after the 10 day course of Augmentin. At 5 days into the Augmentin, Will's congestion has lessened significantly, so hopefully the new Lamactil dosage works to stop Will's seizures and the congestion goes away!

Hope! Pray! We all desperately need sleep!

And moreover, we really need to get Will's seizures under control. Every day is a new day and a new chance to be seizure-free... I remind myself of that each morning and feel hopeful that things will start looking up for our little boy. But I have started to dread the nights. In the 30 minutes after Will goes to bed, I am on pins and needles listening for any sign that something is amiss and a seizure is nearing the surface. Once that time has passed, I ease a bit but know that in the early hours of the morning, I'll be rising regularly - sometimes several times in a single hour - to readjust Will in his bed, as he tries to sleep but just can't because of nasal congestion or muscle spasms in his legs. And that alarm at 5am sure does come early when you've had a truncated night of sleep. No wonder we're all a bit crabby.

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