Well, Soren did his job and had 2 seizures this morning. I did my job and pushed the button when these happened so that it made a little mark on the EEG and he was clearly recorded on the video. The doctors then did their jobs and looked everything and gave us the info.
Soren IS NOT having Juvenile Spasms. He is having Tonic Seizures. This is actually good news because Spasms are a pain in the butt to control. Plus, as I mentioned earlier, they wreak havoc on your vision.
So we are dropping out his Lamictal and adding Topomax. And he will continue his Depakote and Clobazam. We'll see if this combination works better than the other to control the Tonics.
But we are now safely home. Soren still has some leftover junk in his hair despite my giving him a hearty scrub. It was a stressful 24 hours, but we did well!
Amy
Thursday, December 03, 2009
Wednesday, December 02, 2009
EEG Telemetry at UCLA
Today Soren is going in for a routine EEG Telemetry test at UCLA Medical Center. The test should be about 24 hours. I believe I've written about them before. It's a prolonged EEG with the combination of a video camera filming Soren. The EEG is to measure his brain's seizure activity. The video is to monitor what happens to Soren visibly on the "outside" when the seizures occur.
So our goal today through tomorrow is for Soren to HAVE seizures! As I noted in a previous post, Soren is apparently having Juvenile (Epileptic) Spasms again. These were previously called Infantile Spasms, but because Soren is now 6, they have a new name. Soren now has a new neurologist who wants to confirm that these are, in fact, the kind of seizures he is having. Spasms have a distinct pattern called Hypsarrythmia.
We believe these seizure returned over a year ago. Despite trying new combinations of meds, we still don't have full control. However, he's only having 3 a day. Only, you say? Well, considering he used to have hundreds of these a day when he was a baby, 3 is a vast improvement.
And the Spasms knock him out less than the Tonic-Clonics he used to have. He tends to have a quick one, be fine for about 10 minutes (resuming his activity from before the seizure) but then he conks out (is post-ictal) after that 10 minutes. This makes it very tricky when the seizure comes right before I feed him. I'll get the meal started, and then he'll pass out.
However, Spasms REALLY do a number on your vision. Soren's vision was actually improving nicely a little over a year ago, but then the Spasms returned and his visual gains were lost.
So, we want to confirm that this is what he's having. If they are, we will try some different meds (unfortunately, these are meds we tried years before that did not work at that time). If they are NOT, we will also try different meds, since they ones he's on aren't really doing the trick.
To prepare for this test, I can't give Soren any solid food today until he's hooked up to the EEG. They'll have to sedate him since he's such a wiggle-worm and you have to get the leads in the right places for the test to be accurate. So I got Soren's meds in with clear liquid (juice) today. Not his favorite. My boy likes his milk.
We won't check in to UCLA until 11:00. We'll probably be in the room by 1:00. Then we need to get him knocked out and hooked up. After he wakes up, I can feed him. I have no idea what Soren's mood will be going without food for this long. The only time he really doesn't eat is when he's ill. Should be interesting.
Then we hang out in our hospital room all day through tomorrow. I'm not supposed to leave the room because I'm officially the camera woman for this shoot. When the seizures hit, I have to make sure they get that visual!
So, it's against my usual way of thinking, but today and tomorrow I'm actually hoping for seizures while he's hooked up and on camera. The sooner he has them, the sooner we get to go home!
Amy
So our goal today through tomorrow is for Soren to HAVE seizures! As I noted in a previous post, Soren is apparently having Juvenile (Epileptic) Spasms again. These were previously called Infantile Spasms, but because Soren is now 6, they have a new name. Soren now has a new neurologist who wants to confirm that these are, in fact, the kind of seizures he is having. Spasms have a distinct pattern called Hypsarrythmia.
We believe these seizure returned over a year ago. Despite trying new combinations of meds, we still don't have full control. However, he's only having 3 a day. Only, you say? Well, considering he used to have hundreds of these a day when he was a baby, 3 is a vast improvement.
And the Spasms knock him out less than the Tonic-Clonics he used to have. He tends to have a quick one, be fine for about 10 minutes (resuming his activity from before the seizure) but then he conks out (is post-ictal) after that 10 minutes. This makes it very tricky when the seizure comes right before I feed him. I'll get the meal started, and then he'll pass out.
However, Spasms REALLY do a number on your vision. Soren's vision was actually improving nicely a little over a year ago, but then the Spasms returned and his visual gains were lost.
So, we want to confirm that this is what he's having. If they are, we will try some different meds (unfortunately, these are meds we tried years before that did not work at that time). If they are NOT, we will also try different meds, since they ones he's on aren't really doing the trick.
To prepare for this test, I can't give Soren any solid food today until he's hooked up to the EEG. They'll have to sedate him since he's such a wiggle-worm and you have to get the leads in the right places for the test to be accurate. So I got Soren's meds in with clear liquid (juice) today. Not his favorite. My boy likes his milk.
We won't check in to UCLA until 11:00. We'll probably be in the room by 1:00. Then we need to get him knocked out and hooked up. After he wakes up, I can feed him. I have no idea what Soren's mood will be going without food for this long. The only time he really doesn't eat is when he's ill. Should be interesting.
Then we hang out in our hospital room all day through tomorrow. I'm not supposed to leave the room because I'm officially the camera woman for this shoot. When the seizures hit, I have to make sure they get that visual!
So, it's against my usual way of thinking, but today and tomorrow I'm actually hoping for seizures while he's hooked up and on camera. The sooner he has them, the sooner we get to go home!
Amy
Monday, November 16, 2009
Soren Update
Almost a year ago, Soren started having Epileptic Spasms again. We have struggled through this year, playing with meds and diet to try and get control. Unfortunately, we simply haven't. While these seizures are fewer and far between than previous seizures, these are really hard on Soren's vision. And any time he has seizures, progress made is erased. I actually realized that I haven't heard Soren laugh in a long, long time. I fear that either the seizures or the meds or the combination is wiping these out.
Not hearing your child laugh is really hard. I mean, I know he's a content boy, but when he used to laugh, it really drove home that he was happy. That he found things amusing.
So we will continue on our quest to get seizure control. Soren's neurologist is retiring, so maybe fresh eyes will think of something new that will help our boy. And hopefully his infectious laugh will return.
Amy
Not hearing your child laugh is really hard. I mean, I know he's a content boy, but when he used to laugh, it really drove home that he was happy. That he found things amusing.
So we will continue on our quest to get seizure control. Soren's neurologist is retiring, so maybe fresh eyes will think of something new that will help our boy. And hopefully his infectious laugh will return.
Amy
Tuesday, September 22, 2009
Happy 6th Birthday, Soren!
My handsome boy, Soren, celebrated his 6th birthday today!!!
Hooray!
I sent him off to school with Birthday Brownies, which were greatly enjoyed (especially by Soren, who loves the chocolate).
For his birthday, we got Soren a cool new piece of equipment called a Straddle Sitter. It is so AWESOME! Soren can sit up well enough, neck and trunk-wise. He just needs that balance in the back. And this totally does it for him. He can sit in this for over an hour. Of course, at therapy, he was being a pill and scooting his butt forward so I had to keep adjusting him. But normally, I don't have to do anything. He'll happily sit while we watch T.V., cook, or whatever.
In the afternoon, Soren had music therapy. Here are some pictures...
HAPPY BIRTHDAY, SOREN!!!
Hooray!
I sent him off to school with Birthday Brownies, which were greatly enjoyed (especially by Soren, who loves the chocolate).
For his birthday, we got Soren a cool new piece of equipment called a Straddle Sitter. It is so AWESOME! Soren can sit up well enough, neck and trunk-wise. He just needs that balance in the back. And this totally does it for him. He can sit in this for over an hour. Of course, at therapy, he was being a pill and scooting his butt forward so I had to keep adjusting him. But normally, I don't have to do anything. He'll happily sit while we watch T.V., cook, or whatever.
In the afternoon, Soren had music therapy. Here are some pictures...
HAPPY BIRTHDAY, SOREN!!!
Monday, September 07, 2009
Soren's Amazing School: College View
The Glendale schools were supposed to start last Monday, August 31st. However, due to the fires, the schools remained closed until September 4th. Those were a looooong 3 days!
But my big boy returned to school on Thursday, happy and rarin' to go!
At the end of the year, Aaron and another dad started working on the website for College View School. It is now up and running and looks really great.
Check it out at...College View School
Go to the Videos section and you will see an amazing video made at Soren's school last year, showing "A Day in the Life" at College View. It's really amazing.
Amy
But my big boy returned to school on Thursday, happy and rarin' to go!
At the end of the year, Aaron and another dad started working on the website for College View School. It is now up and running and looks really great.
Check it out at...
Go to the Videos section and you will see an amazing video made at Soren's school last year, showing "A Day in the Life" at College View. It's really amazing.
Amy
Monday, August 10, 2009
Safety Bed
Soren didn't used to move too much in bed. For safety's sake, we put a baby gate on his bed, but we never really felt he needed it. We'd lay him down on his back and he would stay there. Sometimes he would turn to his side, which would lead to him getting on his belly, but that was about it.
Until about a month ago. Now that boy is wiggling and scooting. He gets on his belly, often trapping his arm. And how he's insisting on pushing on the gate.
Not being a small child, as the gate was intended to protect, when Soren puts his weight against this gate, it moves. He's gotten himself wedged between the mattress and the gate. And he's fallen out of bed. Twice.
He did this last night and so now I'm looking into safety beds for kids with special needs. As usual, this will be a BIG ticket item, so we are working on the insurance procedures.
But if any of you parents of special needs kiddos has experience--good or bad---with any of these beds, I would love to hear it. Since it is a pricey piece of equipment, we hope to get one that will last a LONG time! Any advice would be greatly appreciated!
Thanks!
Amy
Until about a month ago. Now that boy is wiggling and scooting. He gets on his belly, often trapping his arm. And how he's insisting on pushing on the gate.
Not being a small child, as the gate was intended to protect, when Soren puts his weight against this gate, it moves. He's gotten himself wedged between the mattress and the gate. And he's fallen out of bed. Twice.
He did this last night and so now I'm looking into safety beds for kids with special needs. As usual, this will be a BIG ticket item, so we are working on the insurance procedures.
But if any of you parents of special needs kiddos has experience--good or bad---with any of these beds, I would love to hear it. Since it is a pricey piece of equipment, we hope to get one that will last a LONG time! Any advice would be greatly appreciated!
Thanks!
Amy
Thursday, July 09, 2009
New Class, New Teacher
Soren's school has a summer session, and since Soren is 5 going on 6, he was moved up to the next class. This made me a little nervous, since he has been with the same teacher since he was 3. She is awesome and challenging and has been so great for Soren.
But it seems that Soren is adjusting. It took a couple days. I got some notes back saying that Soren was doing some heavy napping. This is his way in a new situation until he feels it out. It's a defense mechanism.
He started in the new class on June 29th. And now, on July 9th, he seems to have adjusted. He went from being attentive 75% to 80% to 90%. That's pretty darn good for our boy!
And he's really seeming to respond to music. His previous teacher noted this when a Marimba band came to perform at the school. Now his current teacher is noting that Soren is responding to music as well. We've been doing some music therapy for the past 4 months or so, so maybe this is waking up some senses.
Anyhow, in the end, while change is scary and sometimes hard, it's also hopefully for the best and helps move things forward.
That's what I'm hoping for my mysteriously musical little boy.
Amy
But it seems that Soren is adjusting. It took a couple days. I got some notes back saying that Soren was doing some heavy napping. This is his way in a new situation until he feels it out. It's a defense mechanism.
He started in the new class on June 29th. And now, on July 9th, he seems to have adjusted. He went from being attentive 75% to 80% to 90%. That's pretty darn good for our boy!
And he's really seeming to respond to music. His previous teacher noted this when a Marimba band came to perform at the school. Now his current teacher is noting that Soren is responding to music as well. We've been doing some music therapy for the past 4 months or so, so maybe this is waking up some senses.
Anyhow, in the end, while change is scary and sometimes hard, it's also hopefully for the best and helps move things forward.
That's what I'm hoping for my mysteriously musical little boy.
Amy
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