We added the dose of Zonegran to Soren's meds a little over a week ago. The day after we added it, he had a couple brief tonic seizures. But since then, he's been good. Not any more drowsy than usual and currently no seizures. I can't say that it's the Zonegran per se, but I'll take a week of no seizures for whatever reason.
Amy
Sunday, August 26, 2007
Wednesday, August 22, 2007
Shameless Self-Promotion
I know this is a blog about Soren. But since lots of friends and family read this, I figured this was the easiest way to get the word out that the episode of Danny Phantom that I wrote will be airing for the first time this Friday, September 24th, on Nickelodeon!
It's called "D-Stabilized" and will be showing at 1:00 EST and 4:00 PST, but check your local listings.
I actually started writing it back in December of 2005 and, with changes and punch-ups, had a final script by April 2006. Then all the drawing and animating had to happen, which takes some time. I haven't seen the final product and am really excited that it's airing!
So check it out if you're interested. It's a fun show and I felt really lucky to have a chance to write on it before their final season ended.
Amy
It's called "D-Stabilized" and will be showing at 1:00 EST and 4:00 PST, but check your local listings.
I actually started writing it back in December of 2005 and, with changes and punch-ups, had a final script by April 2006. Then all the drawing and animating had to happen, which takes some time. I haven't seen the final product and am really excited that it's airing!
So check it out if you're interested. It's a fun show and I felt really lucky to have a chance to write on it before their final season ended.
Amy
Thursday, August 16, 2007
The Results
We finally got our call from Soren's pediatric neurologist today. Unfortunately, it was not the news we wanted, but it was the news that we had figured. The test results are not definitive enough to perform surgery.
The EEG showed that there are more things going on in the left posterior of Soren's brain than the right. But there are still things going on in the right.
The PET scan showed diffused abnormality, but more on the left than the right.
And the MRI was also "diffusely abnormal" with no clear area to perform surgery on.
So they felt that performing surgery on Soren would not clearly benefit him.
But, this is, of course, not the final word. We now plan to get copies of the tests and get 2nd opinions. You never know if somebody might see something differently. And there are certain surgeons out there who are willing to try something more "daring."
We also went to Soren's pediatric neuro ophthalmologist today for a check up. While he could see that Soren's eyes were still good and straight, he was disappointed that Soren had not made more progress as far as looking at objects when asked. Of course, Soren is more than happy to LOOK AWAY from an object when asked. And whenever the doctor turned away to get a new toy, Soren would look straight at him. Stubborn, opinionated, and crafty. Aaron and I wonder where he could have possibly gotten those traits.
As usual, the "answer" to all this is better seizure control. Which is why we are now considering putting Soren back on a low dose of Zonegran to combine with the Lamictal he is already on. We had a good year of seizure control when he was on these two drugs, though we thought it was just the Lamictal that was helping. When we weaned him from the Zonegran, he became much more alert. But a month after he was off the Zonegran, his seizures started slowly coming back.
So there we are, with more information, but still in the same place. Frustrating, but we move forward.
Amy
The EEG showed that there are more things going on in the left posterior of Soren's brain than the right. But there are still things going on in the right.
The PET scan showed diffused abnormality, but more on the left than the right.
And the MRI was also "diffusely abnormal" with no clear area to perform surgery on.
So they felt that performing surgery on Soren would not clearly benefit him.
But, this is, of course, not the final word. We now plan to get copies of the tests and get 2nd opinions. You never know if somebody might see something differently. And there are certain surgeons out there who are willing to try something more "daring."
We also went to Soren's pediatric neuro ophthalmologist today for a check up. While he could see that Soren's eyes were still good and straight, he was disappointed that Soren had not made more progress as far as looking at objects when asked. Of course, Soren is more than happy to LOOK AWAY from an object when asked. And whenever the doctor turned away to get a new toy, Soren would look straight at him. Stubborn, opinionated, and crafty. Aaron and I wonder where he could have possibly gotten those traits.
As usual, the "answer" to all this is better seizure control. Which is why we are now considering putting Soren back on a low dose of Zonegran to combine with the Lamictal he is already on. We had a good year of seizure control when he was on these two drugs, though we thought it was just the Lamictal that was helping. When we weaned him from the Zonegran, he became much more alert. But a month after he was off the Zonegran, his seizures started slowly coming back.
So there we are, with more information, but still in the same place. Frustrating, but we move forward.
Amy
Friday, August 10, 2007
Still Little News
After harassing the crap out of the UCLA peds neuro folks, I finally spoke with a doctor. Unfortunately, it wasn't Soren's doctor! His doctor is out of town until this Tuesday. FRUSTRATING!!!!!
So the doctor on call told me basically the same old stuff. The MRI showed nothing. The PET scan showed that "the left temporal lobe had decreased metabolism." And she didn't have anything on the EEG. So actually, it was less news!
I asked if she could tell me what was said when the surgical team discussed his case. She said she couldn't because since Soren isn't her patient and everyone talks really quickly, she didn't catch what they said about him. It's the responsibility of the child's physician.
Argh! I have messages into his doctor for when he returns on Tuesday. I'm sure he'll be swamped with other annoyed and anxious parents, so who knows when I'll hear from him.
That all said, Soren has a cold and had a crappy day yesterday. After 6 seizures, I gave him Diastat and knocked him out. He's still sick today, but no seizures so far. In typical "feeling lousy" behavior, he's not eating much, but still drinking his almond milk. Right now he's kicking and happy on the floor and less covered in snot than yesterday.
Amy
So the doctor on call told me basically the same old stuff. The MRI showed nothing. The PET scan showed that "the left temporal lobe had decreased metabolism." And she didn't have anything on the EEG. So actually, it was less news!
I asked if she could tell me what was said when the surgical team discussed his case. She said she couldn't because since Soren isn't her patient and everyone talks really quickly, she didn't catch what they said about him. It's the responsibility of the child's physician.
Argh! I have messages into his doctor for when he returns on Tuesday. I'm sure he'll be swamped with other annoyed and anxious parents, so who knows when I'll hear from him.
That all said, Soren has a cold and had a crappy day yesterday. After 6 seizures, I gave him Diastat and knocked him out. He's still sick today, but no seizures so far. In typical "feeling lousy" behavior, he's not eating much, but still drinking his almond milk. Right now he's kicking and happy on the floor and less covered in snot than yesterday.
Amy
Tuesday, August 07, 2007
Still Nuthin'
Sorry it's been a week with no news, but nobody has gotten back to us! I've put in my calls and plan to bug more people tomorrow. But until somebody tells me something, I have nothing to report.
Soren's been having a few tonic and tonic-clonic seizures every couple days. It's tending to just be one or two. Not anything "major" where we have to reboot him with the Diastat. Not that it makes those seizures any less stressful. I was actually at a writing class the past four days while Aaron took care of the kids. He's the one who had to deal with the stress of it all.
In other, non-test result news, we're planning for our December trip to the DR. For now, this will be our last. This is mainly because we will run out of the funds we've raised! But we got three treatments out of that money, so thanks to you all!
The other reason this will be the last for now is that we want to let things percolate in Soren--see how his development goes after this 5th injection, weigh this treatment with other therapies.
Anyhow, that's where we are today. Again, I promise to write when we have a test update.
Amy
Soren's been having a few tonic and tonic-clonic seizures every couple days. It's tending to just be one or two. Not anything "major" where we have to reboot him with the Diastat. Not that it makes those seizures any less stressful. I was actually at a writing class the past four days while Aaron took care of the kids. He's the one who had to deal with the stress of it all.
In other, non-test result news, we're planning for our December trip to the DR. For now, this will be our last. This is mainly because we will run out of the funds we've raised! But we got three treatments out of that money, so thanks to you all!
The other reason this will be the last for now is that we want to let things percolate in Soren--see how his development goes after this 5th injection, weigh this treatment with other therapies.
Anyhow, that's where we are today. Again, I promise to write when we have a test update.
Amy
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