February Soren Update

Hello all,

Because I've been so busy with the fundraising stuff, I've been a bit neglect in giving actual updates on Soren. So here's the update!

Soren is doing well. The past couple weeks he's been smiling, "chatting," loving school, and enjoying the great outdoors (our backyard).

As I noted, the year started out rough with some bad days of seizures. But then he actually went 22 days without from January 11th to February 3rd! And I think he would have gone longer if he hadn't woken on the 3rd with a nasty cold and eye infection. Poor fella! Even still, he only had one tonic-clonic and one absence with a bit of jerking that day. All things considered, that's not bad for being sick.

So now we are on day 14 without seizures. Let's hope I'm not jinxing this by writing about it.

Oh, funny thing while Soren had his eye infection (well, funny to me, probably not to him). I had to put drops into his eyes every four hours. Well, if you try and pry Soren's eye open, he will clamp his eye down tight. So I started doing the sneak attack. He'd be innocently looking up and WHAM! I'd put a drop in his eye. The first couple times I did this he was just stunned. Then he started complaining about it saying, "Ma-MA!" completely offended. Finally, he just didn't trust me anymore and would close his eyes when I came near with the bottle. Smart kid.

Soren saw his neurologist earlier this month and we had two major questions--could Soren be in the Clobazam study and should we consider implanting the VNS. The first answer was No. Soren is not a candidate because he does not have what are known as drop seizures. From what I understand, drop seizures are when you seize and then lose muscle control, thus dropping you to the ground. In Soren's seizures (generalized tonic-clonic) he stiffens up and jerks.

However, his doctor did think that Clobazam was a good drug to try next. The trouble is, it's not currently FDA approved in the U.S. (thus the studies). The reason for this is that Clobazam is, to put it simply, a modified version of Valium, which is a controlled substance. However, there are still ways to get it, your insurance just doesn't pay for it. There's, of course, the internet. The other way is there is one pharmacy approved to sell it in New York. They get it from another country who then ships it to New York, the pharmacy (upon receiving a proper prescription) sends it to UCLA, UCLA sends it to the patient.

Currently we're pausing on starting this because, 1) Soren would then be on 3 AEDs, which we are not excited about, and 2) Soren may actually be doing well on his current levels of Lamictal and Zonegran. We increased the Zonegran on Jan. 1st. He had bad days on 1/9 and 1/11, but the new dosage might not have fully been in effect. And, as I noted above, he did quite well through the cold on this current dosage.

So, we wait for a "bad day." If he has one with no other extenuating circumstances having caused the seizures (illness, heat) then we will probably start the Clobazam. Then we would wait to see it's efficacy before removing one of the other drugs.

Ooh! In other big news. Our van is safely in Canoga Park! Why isn't it here at our house? Well, let me tell you. In preparation for the new van, wheelchair ramp, making our lives more accessible overhaul, we ordered Soren a new wheelchair. He is currently growing out of his wheelchair/stroller which has served us well for over 2 years. So we ordered the chair, a potty seat (how's that for optimism?), and a lift (to help me get him in and out of bed, up from the floor, and in and out of the tub). However, things have gone less than smoothly as far as billing insurance so we still do not have the chair.

The problem with getting the van when we don't have the chair is that the chair has to be fitted with a special bracket so it can be easily locked into the van when driving. We could have the bracket put on his current chair, but the chances of it fitting his new one are rather slim. Then outfitting the new chair with a bracket would cost an additional $500-$800!

So we are waiting. The van is safe and ours. The chair will be here soon. We're very appreciative for all this equipment, so we will just be patient. By March we are hoping to have both the new chair, the new van, and a far more accessible life!

But this week my Uncle Mike will finish building Soren's ramp at the front of our house! He started it last week and it's looking awesome. He'll be back tomorrow to finish it up over the next couple days! Sweet!

Amy