Updates........

Well, a lot has happened since April. Or, more like a lot hasn't happened. :-)

So, after the last Post, Ben did not have Seizures for quite while. I thought it was more like 3 months, but I guess it was more like 2 months. He had his VNS placed May 2nd, and did not have any siezures for month before that, (wow, I thought it was longer, another good reason to have this blog), and did not have another seizure till June 7th. I remember that date because I had to go to a birth that morning. He woke at 4:30, had a seizure, then another, and then at 5:30 I got a call that my clients water broke. He had one more, all small, and off I went, thankfully Jason was able to call in sick. No More Seizures for the rest of the day. He had a couple more very small ones about a week later.

The VNS surgery went very well, and he healed up just fine. Although the scar on his neck is still pretty bad. I don't think it has done any good yet, even the Magnet doesn't seem to stop Seizures, but I think over time it will help him. At last I'm hoping, it may be hard to really tell.

Then on Fathers Day, which was June 19th, he had a really big one. This one was different as he had it while awake and playing. I could tell there was something going on with him, he fell but did not convulse, and then got right up, although he was wobbly. Then, he fell to the ground and had a longer then usual VERY STRONG seizure, probably around 90 seconds. I tried using the magnet over and over and it didn't stop anything. His post phase was unusual too. He seemed to keep coming in and out of it, and he kept stopping breathing, and I had to shake him to make him breath. It was terrifying, it's even hard to write about it. Jason was at church already, so I was by myself. I ended up calling 911 because of the stopping breathing too. Of course he did not have any seizures from the time the ER got here, till we got HOME from the ER 4 hours later. Then, he started having seizures again, probably because the Ativan I gave him was wearing off.

Since then we have started him on a very small, 1/2 tab which is 1/8gram of Clonazapine during the day, and he has not had any more seizures. We are still talking about changing Meds to Depokate, but it is likley to make him gain wait, and that is terrifying. The good news is, no new Seizures since Fathers Day, except the possitility of a non convulsive one that started on June 27th, the early morning we left for San Diego. I did not see him have one, and I was close to him, but he was all wobbly like he had one, but nothing more the rest of the day. Thank God! Well, gotta go give him his meds now. I will try to keep better at updating.

Love,
Willow