Natural Disaster

It has been more than a little crazy around here this week.
First, a 5.9 earthquake. It literally scared my nurse to the point she thought the world was ending. She ran outside and was screaming. I had to yell at her and tell her to come back in the house and worry about her safety instead of concentrating on Cole. Really reassuring! She was very shook up through out the rest of the day and I tried to give her the remaining part of her shift off. She thought she was going to die. Me, not so much. I must say, since I have felt other earthquakes, this one was the longest I have ever felt, but not the strongest. The fault lines are so different out here. So, aside from our whole house shaking and rattling, no damage done. Brian got sent home and felt more swaying than we did as he was in a high rise.

Now, a hurricane is headed our way!

I never thought that moving to DC would mean earthquakes and hurricanes. It's a great thing that we have a resident emergency management guru. We dug through our 72 hour kits just to be sure and yep, it's all there. SO-if you live in the area and need food, water, electricity or shelter...come on over! Remember, I am married to the man who got a generator and a camp stove for his 30th birthday. We have a bunch of devices that could come in useful during an emergency, not including our food storage and thank goodness it is all organized. So, after our dig through, where we got rid of a few things that expired, we refreshed our battery supply, got more gas for the generator, bought a new lantern and are ready to hunker down if we need to.

All of this comes in the middle of an already-interesting week. I mentioned previously that we are going through the more meds/less meds debate. We took Cole off of the Clonazepam doses. Then off of Depakote for 24 hours. His seizures did decrease, but they are still there and too many. Plus, he has been having tonic-clonics almost every day. However, his eyes are brighter and he is happier. SO, the entire week has been on pins and needles, but it has nothing to do with Richter Scales or inclement weather. We put him back on half of a depakote dose at night, and are going to keep it that way for 2 weeks to let it slowly work out of his system. The Dr is going on vacation for a week, how dare he! ;), which he totally deserves...it is just complicated timing. So, we'll be in a holding pattern next week and have the go-ahead to do what we believe is best and to consult with the new doc that joined the Brain Institute in Miami if we need to.

When you have a child with special needs, something like a power outage can be life-threatening. So, we have updated our emergency plan, gotten refills on all of our prescriptions and considered where we will go if we can't meet Cole's needs at home. All of this planning is a breeze compared to the fear that has struck in our hearts if we can't control this new cycle of seizures. It seems like our next move will have to be Stiripentol and clobabzam. We might try Verapamil (a blood pressure med) first, since Stiripentol works best when in combination with other medications. Those are Topamax (which Cole does not do great on) and clobazam (which acts a lot like clonazepam, also which does not do well with Cole). We are not totally writing off the clobazam, we just know that other drugs that "act" like it have not worked for Cole in the past and Stiripentol needs another drug to make it the most effective. Usually, the "Magic 3" are Stiripentol, Depakote and clobazam. Right now, I can't even think straight to write out our action plan. We do have one though. Just like our action plan for a disaster. I'm not freaking out about 80 mile an hour winds right now. I grew up where the wind blows so hard, our trees were all permanently leaning. I'm more worried about the future of my little boy.

Dravet, a natural disaster.