Wednesday, April 8, 2009

Charlie Update - Hope is kindled

We thought it would be appropriate to follow up to the last post with a current status. We've started to see some positive motion with the seizures.

About a month ago we started to carefully document what meds we were giving Charlie, his daily mood, and the number of seizures he was having. For those who may not know, Charlie has two primary types of seizures: clusters of petite mal seizures (, and grand mal seizures(

We recently took the data we've collected and graphed it out to look for trends in what was happening with poor Charlie. I thought this was interesting and so we share...

As we graphed this, we saw three phases occur as we changed meds, etc.

1. Previous - 3/19: Full Meds - This is pretty much what was happening on the full medicine regiment since initiated (over 6 months ago). He was having 1-3 seizures a day of both varieties. His mood was up and down. His sleep patterns were all over the board and there was very little stability. This is what prompted us to just drop everything and start over so we could figure out what was going on with him...

2. 3/20 - 3/31: No Meds - Once we took him off the meds, the massive seizures ensued. He was have major Grand Mal seizures many times a day. These seizures were more severe than we've ever seen with full body convulsions lasting between 30 seconds to 2 minutes. Also during this time we saw an almost total loss of speech. When he'd have the big ones, sometimes he'd sleep for 3-4 hours afterwords. Someone who had seizures likened the physical toll of a Grand Mal to running a marathon. Despite the physical toll, he was very happy between seizures.

3. 4/1 - current: Started back with the first med, B12 shots. It was a toss up which med to start with. We talked about it and felt like the B12 shots were our best option, so we're starting out light. We're doing a shot every 5 days and since starting those shots, we've only seen one cluster of 35 Petite Mal seizures in the last 9 days. In this time we've seen his verbal communication returning, which is very positive. The interesting dynamic you can also pick out of the graph is that his mood correlates with the Grand Mal seizures. When he's not having seizures, he's more grumpy than normal and starts displaying behavioral issues like hitting head, tantrums, etc. We're still working to determine if it is behavioral or if there is pain/headaches, etc. Many seizure victims have correlated headaches and migranes to the seizures, so occasionally we give him Motrin, in case that is the reality, and he is happy. This sorta makes us think there's some pain/pressure that builds up that the seizures release, and when not having them, it is painful. Such a double-edged sword.

Anyways, we wanted to share the update. We're hopeful that we can keep this streak alive and keep him seizure free. It would be the answer to countless prayers, blessings and collective fasting. We appreciate all those who have taken part and continue to act on Charlie's behalf. We are too grateful to ever appropriately communicate our love and thanks.

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