Soren has been with the same neurologist since he was 9 months old and started having Infantile Spasms. His doctor is one of the top in this field, dealing with many chi;dren who have hard to control seizures. During our time with this doctor, Soren has had many changes in his seizure type and we have juggled medicines trying to get control.
But this wonderful doctor is retiring so Soren got passed to a younger neurologist. I didn't feel she had the experience to deal with Soren's seizures. As much as she tried, she didn't seem to be able to think outside the box. And Soren is WAY outside the regular seizure box.
So we made a change. At Soren's pediatrician's recommendation, we went to a new neurologist. And I have a really good feeling about her. She sat down with me and Soren and went over my 22 page history of him point by point. She marked-up this history, noting med changes. I could see her brain trying to figure out the puzzle that is Soren. She told me drug side-effects that I didn't know about that have been contributing to his recent struggles.
She then laid out a plan for his meds. Decreasing things here, adding things there. And then she wanted to see us back in one month--also noting that I could call her nurse any time if we had troubles.
The great thing is that these changes are having a wonderful effect on Soren. While he's still have a seizure now and then, I haven't seen them everyday like before. He's also much happier. We hadn't seen smiles or heard laughs from Soren for a year. This past month we've gotten both and it's like getting our sunshine back. He's much more alert, eating better, talking more. It's amazing.
It's good to know that even when you have a kid with seizures as tough to control as Soren's, hope is still out there!
Amy
Saturday, February 27, 2010
Sunday, February 07, 2010
One More Word on One of My Least Favorite Words
The word "Retarded" and "Retard" continue to be in the news thanks to that charm-boy, right-wing icon Rush Limbaugh.
And what's sad is that Sarah Palin--a supposed "comrade-in-arms" for children with special needs, the woman who asked for the FIRING of Rahm Emanuel for the use of this same word, says that Limbaugh's use of the word "retard" while "demeaning and crude" was also "SATIRE."
First of all, here's what Limbaugh said...
"Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are loony tunes. (Amy note: I guess if you redefine "retarded" as "crazy" it's not a slam against people with learning disabilities. Just people with mental illness. THAT's okay, right?) Limbaugh continues, "And I’m not going to apologize for it, I’m just quoting Emanuel. It’s in the news. I think their big news is he’s out there calling Obama’s number one supporters f’ing retards."
"So now there’s going to be a meeting. There’s going to be a retard summit at the White House. Much like the beer summit between Obama and Gates and that cop in Cambridge."
When asked about this quote, Palin defended Limbaugh saying he was using "Satire" because he was quoting Emanuel's use of the word.
But I think this is a load of crap. Yes, Limbaugh was using the word because Emanuel used it. But Limbaugh's comments were not satirical. They weren't even the asinine, off-the-cuff comments of Emanuel.
Limbaugh's use of the word "Retard" was exactly what Palin is SUPPOSEDLY against.
Limbaugh used it NOT as a poorly chosen adjective to replace "stupid" as Emanuel did. Limbaugh used it to be MEAN. He used it, in my personal interpretation, specifically and purposely calling these liberals retards. His goal was to insult these people by comparing them to people with with developmental disabilities. It was supposedly meant as a, "Ha, ha! Those guys really ARE retarded." Well, you know what, they're not! And just because you supposedly mean it as a joke doesn't make it any more acceptable.
He then called Emanuel's meeting with a group of advocates for the disabled a "retard summit." Okay, what is satirical about that? That was PURPOSEFULLY cruel against advocates of people with special needs. He used it EXACTLY the way Palin ACCUSED Emanuel of using it (which he didn't). He used it like the "N-word."
It was NOT satirical. It was purposeful. Purposefully mean. He tried to couch it, changing the definition to be "kooky" and "loony tunes." But that is NOT what was intended in the use of that word. And Sarah Palin KNOWS it.
Unfortunately, I think that her speaking out against Emanuel originally about this word was really just a convenient political move. Now that she has to speak against a hugely popular conservative, she can't be as FIRED up about the use of that previously heinous word.
And now, more reports of conservatives using this word are coming out. David Carney, a campaign adviser to Rick Perry, was recently quoted using the word. And Sarah was quoted with a similar soft-pedaling admonishment once again merely calling the use of the word "crude and demeaning." Guess she can't stand behind her convictions for her child quite as strongly when it interferes with her political agenda and her own party uses the word. Sad.
But the point is, LOTS of people use this word. Liberals hot-heads like Rahm, conservative hot-heads like Rush, women in the hair salon, children on the playground, and even at one time, me.
But we shouldn't.
And maybe I, as a parent with NO political agenda, can ask that whenever you have the instinct to say that word, stop and think of Soren.
When you want to say, "that's so retarded" or "what a retard" realize that to ME, you are saying that my son, who has been BRANDED by this word, is stupid. That he is dumb. That he is worthless. And, thus, worth less.
Think of this boy. This boy who, sadly, doesn't have the words to defend himself. But he has me. I will speak for him. I will always speak for him.
Even when-and especially when--those who SHOULD won't!
Amy
And what's sad is that Sarah Palin--a supposed "comrade-in-arms" for children with special needs, the woman who asked for the FIRING of Rahm Emanuel for the use of this same word, says that Limbaugh's use of the word "retard" while "demeaning and crude" was also "SATIRE."
First of all, here's what Limbaugh said...
"Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are loony tunes. (Amy note: I guess if you redefine "retarded" as "crazy" it's not a slam against people with learning disabilities. Just people with mental illness. THAT's okay, right?) Limbaugh continues, "And I’m not going to apologize for it, I’m just quoting Emanuel. It’s in the news. I think their big news is he’s out there calling Obama’s number one supporters f’ing retards."
"So now there’s going to be a meeting. There’s going to be a retard summit at the White House. Much like the beer summit between Obama and Gates and that cop in Cambridge."
When asked about this quote, Palin defended Limbaugh saying he was using "Satire" because he was quoting Emanuel's use of the word.
But I think this is a load of crap. Yes, Limbaugh was using the word because Emanuel used it. But Limbaugh's comments were not satirical. They weren't even the asinine, off-the-cuff comments of Emanuel.
Limbaugh's use of the word "Retard" was exactly what Palin is SUPPOSEDLY against.
Limbaugh used it NOT as a poorly chosen adjective to replace "stupid" as Emanuel did. Limbaugh used it to be MEAN. He used it, in my personal interpretation, specifically and purposely calling these liberals retards. His goal was to insult these people by comparing them to people with with developmental disabilities. It was supposedly meant as a, "Ha, ha! Those guys really ARE retarded." Well, you know what, they're not! And just because you supposedly mean it as a joke doesn't make it any more acceptable.
He then called Emanuel's meeting with a group of advocates for the disabled a "retard summit." Okay, what is satirical about that? That was PURPOSEFULLY cruel against advocates of people with special needs. He used it EXACTLY the way Palin ACCUSED Emanuel of using it (which he didn't). He used it like the "N-word."
It was NOT satirical. It was purposeful. Purposefully mean. He tried to couch it, changing the definition to be "kooky" and "loony tunes." But that is NOT what was intended in the use of that word. And Sarah Palin KNOWS it.
Unfortunately, I think that her speaking out against Emanuel originally about this word was really just a convenient political move. Now that she has to speak against a hugely popular conservative, she can't be as FIRED up about the use of that previously heinous word.
And now, more reports of conservatives using this word are coming out. David Carney, a campaign adviser to Rick Perry, was recently quoted using the word. And Sarah was quoted with a similar soft-pedaling admonishment once again merely calling the use of the word "crude and demeaning." Guess she can't stand behind her convictions for her child quite as strongly when it interferes with her political agenda and her own party uses the word. Sad.
But the point is, LOTS of people use this word. Liberals hot-heads like Rahm, conservative hot-heads like Rush, women in the hair salon, children on the playground, and even at one time, me.
But we shouldn't.
And maybe I, as a parent with NO political agenda, can ask that whenever you have the instinct to say that word, stop and think of Soren.
When you want to say, "that's so retarded" or "what a retard" realize that to ME, you are saying that my son, who has been BRANDED by this word, is stupid. That he is dumb. That he is worthless. And, thus, worth less.
Think of this boy. This boy who, sadly, doesn't have the words to defend himself. But he has me. I will speak for him. I will always speak for him.
Even when-and especially when--those who SHOULD won't!
Amy
Wednesday, February 03, 2010
Sarah, Rahm, and "Retarded"
I'm sure lots of you have been hearing about Rahm Emanuel using the word "retarded" recently and Sarah Palin's Facebook response. If not, you're hearing about it here.
Let me say upfront that I am not a fan of Sarah Palin. Though I'm not sure that I'm really a fan of Rahm Emanuel either.
But politics aside, Sarah is a mom of a child with special needs, so her perspective in this situation cannot be denied. Having a child with developmental delays myself, I understand Sarah taking offense to Rahm's use of this word. And I actually appreciate her speaking up about this misuse.
However, in all honesty, I'll bet you dollars to doughnuts that prior to the birth of her son, at some time in her adult life, Sarah used the word "retarded" in much the same way. Why am I willing to make such a bold wager? Well, because I used to use this word this way!
I've written about this before but it's buried deep in this blog. So let me state it again. Before Soren was born, "retarded" was part of my vocabulary as an adjective used in place of "stupid" or "dumb." For me, "retarded" had more "Zing!" so to speak. It seemed like more of a rebellious word. And I'm quite the rebel.
Then, after Soren's delays became known, I actually CONTINUED to use it! With some defiance, I must say. I was, like, "You're not taking that word from me just because my son has developmental delays!"
Guess I was the one who really had a lot to learn.
As Soren's delays continued and I became more immersed in the special needs community, I began to accept how inappropriate and hurtful this word is, even when folks say it casually like I used to. For those of us combating the diagnosis of "Mental Retardation," or "MR" as it's commonly referred to, this word has deep resonance. And its misuse is like a knife in the gut.
Most people I know merely use the word the way Rahm did. As an adjective. But because I used to say, "That's so retarded" for years, when I hear others say it now, I just let it slide.
But then there are the times it's used as a noun, as in, "What a retard." Now that one REALLY gets me. It's really hard NOT to say something.
But it's also almost impossible for me TO say something. My fear is making people feel uncomfortable or awkward about my situation. Or making them self-conscious when they speak around me. I was actually in the hair salon today writing this and overheard a woman say it! But I said nothing. I just took the hit and let the wound heal.
And while I agree with Sarah speaking out about this, I disagree with her comparing "Retarded" to the "N-word." Now this is a personal issue, so maybe that's REALLY how she feels. But I don't really think so. I think her comparing "Retarded" to the "N-word" just guaranteed it to stand out more when the press picked up the story.
For me, the two words incomparable. In my life, the "N-word" was always meant as a slur. It always meant as mean and hateful. But "Retarded" has had more of an evolution into its current "inappropriate" status.
I liken "Retarded" to the word "Gay." Now when I was young, lots of people, including me, said, "That's so gay." And it was, obviously, meant as an insult. Well, as the years passed, people began to realize that the gay community takes offense at using this word this way! And rightly so! Thus people in general have stopped using "Gay" in this manner.
So, yes, I am glad that Sarah Palin spoke up about this. Awareness must be raised that the casual use of this word can be very hurtful to people. Maybe this is a step in that direction.
Amy
Let me say upfront that I am not a fan of Sarah Palin. Though I'm not sure that I'm really a fan of Rahm Emanuel either.
But politics aside, Sarah is a mom of a child with special needs, so her perspective in this situation cannot be denied. Having a child with developmental delays myself, I understand Sarah taking offense to Rahm's use of this word. And I actually appreciate her speaking up about this misuse.
However, in all honesty, I'll bet you dollars to doughnuts that prior to the birth of her son, at some time in her adult life, Sarah used the word "retarded" in much the same way. Why am I willing to make such a bold wager? Well, because I used to use this word this way!
I've written about this before but it's buried deep in this blog. So let me state it again. Before Soren was born, "retarded" was part of my vocabulary as an adjective used in place of "stupid" or "dumb." For me, "retarded" had more "Zing!" so to speak. It seemed like more of a rebellious word. And I'm quite the rebel.
Then, after Soren's delays became known, I actually CONTINUED to use it! With some defiance, I must say. I was, like, "You're not taking that word from me just because my son has developmental delays!"
Guess I was the one who really had a lot to learn.
As Soren's delays continued and I became more immersed in the special needs community, I began to accept how inappropriate and hurtful this word is, even when folks say it casually like I used to. For those of us combating the diagnosis of "Mental Retardation," or "MR" as it's commonly referred to, this word has deep resonance. And its misuse is like a knife in the gut.
Most people I know merely use the word the way Rahm did. As an adjective. But because I used to say, "That's so retarded" for years, when I hear others say it now, I just let it slide.
But then there are the times it's used as a noun, as in, "What a retard." Now that one REALLY gets me. It's really hard NOT to say something.
But it's also almost impossible for me TO say something. My fear is making people feel uncomfortable or awkward about my situation. Or making them self-conscious when they speak around me. I was actually in the hair salon today writing this and overheard a woman say it! But I said nothing. I just took the hit and let the wound heal.
And while I agree with Sarah speaking out about this, I disagree with her comparing "Retarded" to the "N-word." Now this is a personal issue, so maybe that's REALLY how she feels. But I don't really think so. I think her comparing "Retarded" to the "N-word" just guaranteed it to stand out more when the press picked up the story.
For me, the two words incomparable. In my life, the "N-word" was always meant as a slur. It always meant as mean and hateful. But "Retarded" has had more of an evolution into its current "inappropriate" status.
I liken "Retarded" to the word "Gay." Now when I was young, lots of people, including me, said, "That's so gay." And it was, obviously, meant as an insult. Well, as the years passed, people began to realize that the gay community takes offense at using this word this way! And rightly so! Thus people in general have stopped using "Gay" in this manner.
So, yes, I am glad that Sarah Palin spoke up about this. Awareness must be raised that the casual use of this word can be very hurtful to people. Maybe this is a step in that direction.
Amy
Monday, February 01, 2010
Disneyland with Soren
Aaron and I have always loved Disneyland. That love was easy to pass along to Moira. Soren always comes along, but we're not always sure how much he enjoys it. It's bright, it's noisy, it's overwhelming! But yesterday, he really seemed to like it all, staying awake for the majority of our visit.
He's a big fan of the dark rides: Peter Pan, Pirates, Alice, and the Tiki Room. He LOVES the Tiki Room. Always has. Yesterday, he was actually taking his one nap right before we went in. But once the lights dimmed and the birds started talking, Soren peeked his eyes open. And when the music began, his eyes were wide open and he was kicking, talking, and watching. Watching him enjoy it makes it my favorite.
We also did Buzz Lightyear, which we've done before. Usually we go to the special wheelchair transfer area and unload Soren, sitting him on our lap for the ride. But this time, the Cast Member asked if I wanted Soren to stay in his chair. The Buzz ride has ONE car that has a ramp to roll a chair into and a little seat next to it for the other person. And as luck would have it, it came by right when we arrived.
Always eager NOT to lift Soren, I wheeled his chair in and sat beside him. It was SO awesome! Soren was much more comfortable and got a way better view of the ride. This time he was really looking around at all the amazing colors. He was a little annoyed with me helping him fire the blaster, but oh well.
But the BEST thing that happened was on the Haunted Mansion. This has always been one of my favorite rides. I remember riding it over and over again as a teen one time when there were no lines at Disneyland. But I always wanted to see where the "Doom Buggies" went after you hop out onto that conveyor belt/people walk thing. I used to imagine jumping back into it, hoping the Disney folks wouldn't notice (which of course they would and then I would have gotten in big trouble).
Well, because of the kids, I hadn't been on the Haunted Mansion for about 10 years. Moira wasn't ready for it until this year. So we decided to brave it. But we had no idea how it all worked with the wheelchair. I mean, you leave out a different area than were you start in the Doom Buggies.
The first part was completely the same, going down in the room with "no windows and no doors." Then when it was time to load into our Doom Buggy, they slowed the conveyor down a bit so we could get Soren out of his chair. (NOTE: I now know that one of the reasons the Doom Buggies stop during the ride is because of this!) So we rode to the end, where we usually get out. But this time they stopped the ride and told us to stay in our Buggies.
Then my childhood dream came true. They started the ride again and we got to go "behind the scenes" in our Buggies! It was such a simple, silly thing, but it made me so happy! And just so you know, the Buggies just loop around and come back out to pick up people.
And as if that wasn't enough to give me my dork-fix, we got a bonus! To get to ground level and out of the ride, we rode the elevator back up! So we got to see the paintings go from stretched back to normal. It was so cool!
I've gotten quite an education since Soren came into my life. And yesterday it was a fun education, Disneyland-style.
Amy
He's a big fan of the dark rides: Peter Pan, Pirates, Alice, and the Tiki Room. He LOVES the Tiki Room. Always has. Yesterday, he was actually taking his one nap right before we went in. But once the lights dimmed and the birds started talking, Soren peeked his eyes open. And when the music began, his eyes were wide open and he was kicking, talking, and watching. Watching him enjoy it makes it my favorite.
We also did Buzz Lightyear, which we've done before. Usually we go to the special wheelchair transfer area and unload Soren, sitting him on our lap for the ride. But this time, the Cast Member asked if I wanted Soren to stay in his chair. The Buzz ride has ONE car that has a ramp to roll a chair into and a little seat next to it for the other person. And as luck would have it, it came by right when we arrived.
Always eager NOT to lift Soren, I wheeled his chair in and sat beside him. It was SO awesome! Soren was much more comfortable and got a way better view of the ride. This time he was really looking around at all the amazing colors. He was a little annoyed with me helping him fire the blaster, but oh well.
But the BEST thing that happened was on the Haunted Mansion. This has always been one of my favorite rides. I remember riding it over and over again as a teen one time when there were no lines at Disneyland. But I always wanted to see where the "Doom Buggies" went after you hop out onto that conveyor belt/people walk thing. I used to imagine jumping back into it, hoping the Disney folks wouldn't notice (which of course they would and then I would have gotten in big trouble).
Well, because of the kids, I hadn't been on the Haunted Mansion for about 10 years. Moira wasn't ready for it until this year. So we decided to brave it. But we had no idea how it all worked with the wheelchair. I mean, you leave out a different area than were you start in the Doom Buggies.
The first part was completely the same, going down in the room with "no windows and no doors." Then when it was time to load into our Doom Buggy, they slowed the conveyor down a bit so we could get Soren out of his chair. (NOTE: I now know that one of the reasons the Doom Buggies stop during the ride is because of this!) So we rode to the end, where we usually get out. But this time they stopped the ride and told us to stay in our Buggies.
Then my childhood dream came true. They started the ride again and we got to go "behind the scenes" in our Buggies! It was such a simple, silly thing, but it made me so happy! And just so you know, the Buggies just loop around and come back out to pick up people.
And as if that wasn't enough to give me my dork-fix, we got a bonus! To get to ground level and out of the ride, we rode the elevator back up! So we got to see the paintings go from stretched back to normal. It was so cool!
I've gotten quite an education since Soren came into my life. And yesterday it was a fun education, Disneyland-style.
Amy
Tuesday, January 12, 2010
Hungry Boy
Here is a lovely photo our friend Sabrina took of Soren. If you live in L.A., she'll take your photos! Check out her website...
On to Soren...it's been a little be of a rough start of the new year for Soren. During Christmas break, he caught a cold that led to an ear infection. So he had a little delay returning to school. But now he's back to his chatty, hungry self.
Which leads me to the funny thing that happened yesterday. I send Soren's lunch with him to school every day. Monday morning a prepared avocado and salmon and put it in the fridge. When the bus came, I put the container in his lunchbox and sent him off.
When Soren came home, I had to give him a snack to get his antibiotic in. Before I got the food ready, every time I walked by Soren, he opened his mouth hoping for food. I thought this was odd since he had such a big lunch. So I fed him his snack, which he devoured.
That evening, I was preparing Soren's dinner and looked in the fridge for some squash I'd cooked. It was just a tiny bit of squash that I was going to mix up with some egg. But, for the life of me, I couldn't find it. But I DID find the avocado and salmon that I'd made that morning.
Poor little boy. I sent him to school with about 5 bites of squash for lunch. No wonder he was opening his mouth like a baby bird after school. He was starving!
Needless to say, he wolfed down his dinner really fast. But I felt so bad. Soren doesn't have any words to tell me he's hungry, but was giving me the only sign he knew--an open mouth--to clue me in. Good thing I had to give him his antibiotic!
Amy
Thursday, December 03, 2009
UPDATE on EEG
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
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
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
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