Friday, January 13, 2012

Back to Life, Back to Reality

The Soundtrack for Life started playing the opening of this song as I was stuck in traffic, trying to get to my little boy. You really want to take up residence in my head, don't you? :)

Regardless of having random songs from 1989 being piped into the corners of my mind, yesterday ended a wild streak unlike anything else we have experienced.

My mother-in-law is in town and the weather was perfect yesterday. 60 degrees, in January, and no wind. Cole has been doing extremely well and had made it 5 whole weeks without needing rescue meds to stop a seizure. Let me clarify this...we still have given him meds. With all of the traveling we did in the month of December, we pre-medicated him before flying and going to Disneyland. There was about 5 times that we gave him a small dose of diazepam through his g-tube while we were gone, so he was not totally "rescue med free". Also, he has been far from seizure free. He's even had partial complex and myoclonic clusters that possibly could have used medication, but thankfully resolved on their own. The absence and myoclonics have still stuck around through this good streak, but hey...we will take them over a tonic-clonic (grand mal) any day! SO-Cole has not been seizure free, nor med free. Just that he has not needed medication to stop a seizure and has not had a tonic-clonic (the worst kind of seizure *for Cole) for a long time. Do you feel enlightened? :)

Back to the mother-in-law story....
Cole broke his med streak on Wednesday. His nurse decided that he needed a small dose of diazepam to break a cluster of myoclonics while they were at school. Still, we were thrilled! He had not gone 5 weeks (to the day, actually) since 2009. A huge feat for us. Although we were kind of sad that this magic that Slugger brought seems to be wearing off (as we knew it would), Cole seemed his totally normal self on Thursday morning and we sent him to school as usual. SO, having company in town is very rare and we try to be good hosts (emphasis on try, doesn't always work out that way). I asked our guest if she wanted to go to Mount Vernon, since the weather was good and Cole was in school. In a very strange twist, my husband was working in an office close to home and was able to go and pick up the boy I nanny after school. *Weird, calling myself a nanny...then again, baby-sitter makes me sound like I am 14. So, my ducks were in a row. I don't have to remind you that I never really go anywhere, especially if it is during school when something could happen. However, Cole was doing awesome, Brian was nearby and we had company.Mount Vernon was lovely as usual and there were hardly any people there. I learn something new every time I go and always leave with a deep appreciation for George Washington and the men who helped to found our country. Just as we were deciding whether to go home or extend our stay to include a meal at the Mount Vernon Inn, I got a phone call from Cole's nurse. She let me know that Cole was having a seizure, she gave him medication and that his oxygen sats were good. I told her that Brian was actually already on his way to the school and would be there soon. Our decision was made, we hopped in the car and headed for home.

I called Bri and alerted him to the situation. He has actually never been inside of Cole's school, so I walked him through everything until he got to the classroom. Then I didn't hear from anyone for a long time.

This is the part where my little brain goes into overtime and thinks in its far recesses, "Could this be THE ONE?" The one that finally takes him from us. It is a question that is always there, hanging out in the back like an awkward teenager at their first dance. It has actually moved forward a little in the past few weeks. It is always a sad day when one of our little group loses a child. However, recently a 14 year old boy from England died unexpectedly on New Years day. It rocked our small Dravet family, because this young man was actually doing EXTREMELY well. He was on Stiripentol, practically seizure free and learning new skills all of the time. All of this was rushing through my mind as I was trying to fight traffic, listen to the GPS and look at the pink line, telling me where to go, on the screen that had an awful glare. Finally, I just called Brian, thinking that he had forgotten to call and update me because he was busy meeting the teacher, comforting Cole, etc. He answered and informed me that Cole was still seizing after 4 different doses of medication and that he had called 911. Great. As I am crawling through practical gridlock, I switch our destination to the hospital. All the while, I have the beginnings of a migraine and have not really eaten. So, I am digging through my purse for food, talking on the phone, driving, worrying and all the while trying to play it cool. I'm really glad that I did not get in a wreck!

It threw the entire school off of schedule when the ambulance came. It parked in the front of the school and the buses could not get out. So, the principal had to send out an e-mail and a voicemail to all of the parents that the buses were delayed by a medical emergency. Yep, that's us...the people that made all of your kids late! :)

In the next two hours, there are multiple phone calls trying to figure out how to get the boy I watch taken care of. They would not let him ride in the ambulance to the hospital (which he probably would have thought was really cool), so he was stuck at the school. There are a lot of rules regarding letting people pick up children at school here. Nothing like the standards of my youth. Anyone could show up, say "I'm here to pick you up" and off we went! Not so much in this modern day. There are lists of approved people, you have to be buzzed in, etc. SO-I then switched our destination back towards home. All of this was taking me on different routes and I was getting stuck in the lovely traffic here that could make even the most patient person begin to lose their mind. In the end, we figured everything out and I ended up at the hospital after we stopped by the house to pick up Elmo and The B.

Cole stopped seizing in the ambulance, the entire thing lasted over 35 minutes. When I finally got to the hospital, I heard the whole story. Cole was out on the playground (remember perfect weather?) and was on the slide. Slugger ran up to him as soon as he came down the slide and was nudging and licking him consistently! Hooray! The nurse was aware that something was different and Slugger was alerting. Cole's speech slowed, his eyes glazed but he was still walking and talking. Nonetheless, with Slugger's warning the nurse picked him up and took him in to the school where she gave him a small dose of meds. He was still coherent, but eventually started having convulsions and then things went down hill from there.
My three boys

So, hooray for Slugger! Much easier to take care of things inside and we were beginning to wonder about his capability to alert. Now we just need to keep working on barking.

Our hospital was great again and just let us do whatever we wanted, including no IV. Everyone loved Slugger as usual. Cole went through the normal routine. Waking up, screaming bloody murder for a half hour or so, falling asleep and then sitting up and saying, "I'm back!"He also puked all over me right before he left. Always a treat.

We are just glad that he is okay and will start our countdown again. This last stretch has made us think that there could actually be a day or two that could be considered "seizure free" in the future. I just hate that Dravet has to remind us that it is never going away. The beast reared its ugly head again, but hopefully we can scare it back into hiding.


  1. Aw! It was good while it lasted, but I hope the next streak is longer! Love to you and the boys!

    (Small nitpick: TCs are by far the worst looking seizures, that's agreed. But its hard to say they are THE worst. Just to name a few other badies there are apneic seizures (can be solo or coupled with another SZ type), where your child stops breathing, and let's not forget hypsarrhythmia/infantile spasms which leave permanent brain damage every single time. There's lots of nasties in the SZ world! )

  2. Funny you say that C! As I was re-reading (as I am prone to do), and before I read your comment, I noticed that I should have said that TC's are COLE'S worst seizure type that he has right now.

    This is why you and I are friends! :)

    Fixed it!

  3. I knew you'd be on it, Niki MD PhD. ;) Love ya!

    PS - Just found some chocolate covered mint oreos. Not as good as the Joe Joes but basically you are a bad BAD influence! ;)

  4. Ugh. What a day! Sorry the streak was broken. Hopefully the Slugger magic continues.

  5. My son is 4 year old and suffering from tonic clonic seizures. I found him unconsciousness and fall on ground in our garden, our doctor prescribe, keppra helps to treat tonic-clonic seizures in adults and children who are at least 6 years old. What other treatment should I go with?

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