Clobazam

When last I wrote about discovering Soren's night seizures (which I now have the song "Night Fever" by the Bee Gees in my head but instead I sing, "Night Seizures, Night Seizures. We know how to do it.") I noted that we were looking into starting Soren on Clobazam and possibly weaning him off another drug.

Well, we didn't start Soren on the Clobazam yet because, though we had a little secret stash, we found out that getting more was a little more involved than expected. Since it is not FDA approved, we not only had to get a prescription but also had to get a letter of necessity. And since Soren's doctor was out of town, there was going to be a delay. Then that information had to get to the pharmacy in New York that is approved to distribute it. Then I had to call the pharmacy and order the drug, since we have to pay out-of-pocket. And then it had to be sent to UCLA and then to us! Whew! So we didn't want to start Soren on a new drug and then run out of it before we had our refill. The good news is that we got the Clobazam yesterday and will start bringing him onto it tonight.

I actually very briefly considered not doing this--or at least pausing. Soren's legs haven't seemed as painful the past couple weeks when he wakes up. And this past week he's been really active. Usually when we put him to bed, he stays in one spot, on his back all night. But recently he's been moving all over the bed, sleeping on his side, and even sleeping on his belly. It's been great to see the activity. And it's been a relief that he's been on his back less since we worry about skin breakdown.

But my thought to pause was completely obliterated this morning. Soren, who went to bed a little later than usual, was sleeping-in rather late. At first I thought nothing of it but then, just as I was beginning to worry that something else might be up, he had a big tonic-clonic. I then realized that he had probably had a few others earlier this morning, thus the late sleeping. When he finally woke up, I got his meds into him and tried to give him milk. But he seized again. I gave him Diastat and now his down for the count. So the Clobazam will begin tonight. Hopefully we will get the results we're looking for (i.e. no seizures).

As a side note, we did not end up weaning either of Soren's other meds. I asked and got a resounding NO (or it at least seemed resounding in the email since all it said was NO). We see Soren's neurologist in a month and will be on the full dose of Clobazam by then. We'll discuss cutting out another drug at that point.

I'll update you as things continue.

Amy

Sign o' the Times

As I've noted before, Soren attends an all special needs school. We love this school--the teachers, the aids, the secretary, the nurse, the principal. They work Soren hard and clearly care for him and all the other kids.

But every time I went to pick Soren up for Feeding Therapy, I was met with this sign...

There's one as you drive in and one as you drive out, hitting you coming and going. Now, this is a common sign which simply means, "Please drive slowly, there are children present." But in the context of a school for children with special needs, it seemed like an advertisement. "SLOW CHILDREN! GET YOUR SLOW CHILDREN HERE!" Every time I drove in I was like, "Aw, come on! Really?"

I voiced this to Aaron who took action. At Soren's Open House, we approached the principal and asked if we could replace the Slow Children sign with a Caution Children sign. We wanted to include a figure that was wheelchair bound. We replaced the other sign with this...

I know it may seem like a little thing, but now when I drive into school, I smile.

Amy

LA Triathlon! Join TEAM SOREN!

On Sunday, September 7th, our friend Eric is going to compete in the Los Angeles Triathlon. His goal for doing this event is to raise funds for Soren for another stem cell treatment. In addition to this, he and his wonderful wife Sue are going to throw an after-party/silent auction/rousing night of entertainment that is sure to be a blast!

We think it would be great to create Team Soren, pooling together anyone athletically inclined who is interested in doing the LA Triathlon and raising funds for Soren. The LA Triathlon offers the Sprint Distance - .6K swim, a 12 mile bike and a 5K run – and also the Olympic Distance - a1.2 K swim, 25 mile bike race and a 10K run.

If you have never done a Triathlon but always wanted to, this is your chance. We will provide you with a training schedule that will prepare you for the race as well as organizing a couple training clinics in which we will share great race tips and transition techniques.

Now, if you are interested in this, but are not up to running, cycling, and swimming, never fear! We are also putting together relay teams. So if you can run like the wind, but you can’t cycle for beans and/or the thought of swimming in the ocean makes your heart sink, we will match you up with folks who can.


But, to do this, WE NEED YOU to join Team Soren! “What do I get for joining Team Soren?” you ask. First of all, we will cover your entry fees. Secondly, we will provide you with a fantastic Team Soren shirt to race in.

We are also designing Team Soren shoes by Nike. Now, we can’t pay for these, but if you are interested in purchasing them as a team member, they will be available.

And lastly, you will get to come to the awesome after-party where you will be treated like a god for busting your butt and raising funds for Soren!

Also, by competing in the LA Triathlon, you will receive a Finishers Medal, a Tee Shirt and tons of other goodies. For more information, check out

The LA Triathlon Site

So if this sounds like something you really want to do—either the entire triathlon or just a portion—please email me at amykeatingrogers@pacbell.net. Please also feel free to email Eric Germansky at ericgerm@sbcglobal.net if you have any questions about the race.

Thanks!

Amy