When I thought about the hard questions my kids would ask growing up, I figured the tough ones would be about where babies come from, if Santa is real, relationships and questions of my own experiences as I entered adulthood. I've already dabbled with answering the first two. I know there will be more questions that will test me, but I kindof know they are coming and in some small way I'm expecting them, ready or not. My approach has always been to be honest and give them small pieces of information until they are satisfied with the response.
Tonight as I was helping Evan get ready for bed, he caught me off guard. He looked up at me and asked in his sweet 7-year-old voice, "Mommy, do you think I'll have another seizure?" It felt like a kick in the stomach. I'm glad he's old enough to talk about his epilepsy and how it impacts him but it also means he's aware enough of the seizures to initiate a conversation. I smiled weakly and said, "I hope not" to which he responded, "I hope not too." He said he hoped he didn't have one on Christmas or Christmas Eve. I told him about the seizure he had last year on Christmas Eve and how he woke up in the morning, opened presents and had a great day, just as if it had never happened. I assured him that if he had a seizure we'd take care of him and he'd probably feel fine my morning and he seemed to agree with that.
This conversation was spurred by a seizure Evan had early this morning. It was only 3:30 am and it lasted 15-16 minutes. We gave him the rescue medication we keep by our bedside and after 5 minutes when the seizure wasn't stopping we gave him another dose and called 911. By the time the EMTs walked into the house Evan's seizure was ending. We didn't go to the hospital, but this is the longest one he's ever had. Evan always goes back to sleep and wakes up at the normal time for school, often not remembering having had a seizure. But he remembered this one -- I guess it makes more of an impression when a bunch of paramedics arrive at the house.
As the sedative effect of the medication took hold, Evan told them with his eyes closed that if he was going to ride in the ambulance, he wanted to go to the hospital in New York. We all chuckled and I thought, yep, that's Evan, even as he drifts off to sleep he's cracking jokes.
I'm sure there are more tough questions to come on this topic, but in some small way I'm expecting them, ready or not.
December 14, 2010
November 28, 2010
One Less Dose!
Too many meds...
Evan seems to be having a slight medication interaction again. We increased one of his meds and it interacted with his Trileptal and he started having double vision. I'm so glad he is old enough to tell us what's going on. As a result of this new development we have pulled his 4pm dose of Trileptal and we are now down to giving Evan medication four times a day! Time to change the chart!
Evan seems to be having a slight medication interaction again. We increased one of his meds and it interacted with his Trileptal and he started having double vision. I'm so glad he is old enough to tell us what's going on. As a result of this new development we have pulled his 4pm dose of Trileptal and we are now down to giving Evan medication four times a day! Time to change the chart!
November 21, 2010
Why is Evan Having Seizures?
Last week we talked to Evan's neurologist about all kind of things. We only want to know two things:
Why is Evan having seizures?
How can we make them stop?
Unfortunately these are the two hardest questions to answer and there are no easy answers to either question.
Evan's on a lot of medication and is currently taking three meds that are spread out over five doses each day and just to keep us on our toes, no two doses are the same. He takes 19 1/2 pills every day. Some of them he just chews up and others we crush and mix with something to minimize the bitter taste. What's interesting is that when we talked to his doctor she told us that she got the results from his recent blood work and he is hypermetabolic and none of the medications are at a therapeutic dose for him (although with the amount he's taking, they should be). For some reason his body is processing all this medication so quickly that it isn't staying in his bloodstream long enough to be considered therapeutic. This is common with kids and can make treatment challenging to say the least.
Evan had another seizure this morning and we began an aggressive increase of medication to try to stop the seizures which are still happening every 7-14 days. On the up side there is hope because maybe he just needs a significantly higher dose to get things under control, but we've been down this path before with seizures that medication couldn't touch, so we are nervous about their effectiveness.
As for Evan, he is so strong...he had a seizure at 7am that lasted 7-8 min, we gave him an emergency medication to stop it (the amount would probably knock out an adult for several hours), he cat napped for 45 min. and was ready to go. He was a little off-balance and his speech was slurred for a half hour, but that didn't slow him down. At 1pm I took him to a birthday party at a Kiddie Gym and he ran around, climbed all over the equipment and finished it off with a ride on the zipline and a slice of cake. Life is good.
Why is Evan having seizures?
How can we make them stop?
Unfortunately these are the two hardest questions to answer and there are no easy answers to either question.
Evan's on a lot of medication and is currently taking three meds that are spread out over five doses each day and just to keep us on our toes, no two doses are the same. He takes 19 1/2 pills every day. Some of them he just chews up and others we crush and mix with something to minimize the bitter taste. What's interesting is that when we talked to his doctor she told us that she got the results from his recent blood work and he is hypermetabolic and none of the medications are at a therapeutic dose for him (although with the amount he's taking, they should be). For some reason his body is processing all this medication so quickly that it isn't staying in his bloodstream long enough to be considered therapeutic. This is common with kids and can make treatment challenging to say the least.
Evan had another seizure this morning and we began an aggressive increase of medication to try to stop the seizures which are still happening every 7-14 days. On the up side there is hope because maybe he just needs a significantly higher dose to get things under control, but we've been down this path before with seizures that medication couldn't touch, so we are nervous about their effectiveness.
As for Evan, he is so strong...he had a seizure at 7am that lasted 7-8 min, we gave him an emergency medication to stop it (the amount would probably knock out an adult for several hours), he cat napped for 45 min. and was ready to go. He was a little off-balance and his speech was slurred for a half hour, but that didn't slow him down. At 1pm I took him to a birthday party at a Kiddie Gym and he ran around, climbed all over the equipment and finished it off with a ride on the zipline and a slice of cake. Life is good.
October 22, 2010
Update...
We seem to have the bus situation worked out so we're not having an irate Evan every day when we pick him up. He's so perceptive, even at six years old, that he immediately recognizes when he is being treated differently. Clearly, this will be our challenge. There are certain times when Evan needs special accomodations that result in him being treated differently and it's a tough situation to navigate...
He gets picked up early from school every Wednesday for PT and feels special because he gets to walk to the front of the school with two buddies.
He is selected for a pull out session for advanced academics and is furious that he has to leave his classroom.
Loves his private physical therapist; HATES the adaptive PE instructor and told him as much.
It doesn't help that Evan is also on a medication that is known to cause extreme irritability and aggression. We can sometimes see that he is trying to manage the chemical change but when he loses it (usually emotional tears rather than aggression) I have to just take a deep breath and choose my words carefully.
He gets picked up early from school every Wednesday for PT and feels special because he gets to walk to the front of the school with two buddies.
He is selected for a pull out session for advanced academics and is furious that he has to leave his classroom.
Loves his private physical therapist; HATES the adaptive PE instructor and told him as much.
It doesn't help that Evan is also on a medication that is known to cause extreme irritability and aggression. We can sometimes see that he is trying to manage the chemical change but when he loses it (usually emotional tears rather than aggression) I have to just take a deep breath and choose my words carefully.
September 17, 2010
umm...discrimination?
Today Evan got off the bus teary-eyed because, although he didn't have the words for it, he was a victim of discrimination. Not by some mean kid, but by the transportation department of the school system. They didn't say he couldn't ride the bus...they know that's illegal and would never do such a thing.
But they did single him out because he has epilepsy and insist that he ride sitting by the window and next to an adult who has been assigned to him. It took Evan two weeks to bring this up to us but apparently after today he couldn't take it anymore. All Evan wants is to be able to sit wherever he wants on the bus and with his friends. All Evan wants is to be treated like everyone else. Seems a simple enough request.
My guess is the the transportation department just wants to keep Evan safe. Unfortunately, by making him sit next to an adult they have singled him out as being different in a situation where it was unnecessary. My expectation is that next week the "assigned adult" will sit in a different seat where he can be close enough to see Evan.
Friday afternoons are not productive for dealing with such issues so I'll detract my claws and wait until Monday, however, my manicure is already scheduled for Sunday.
But they did single him out because he has epilepsy and insist that he ride sitting by the window and next to an adult who has been assigned to him. It took Evan two weeks to bring this up to us but apparently after today he couldn't take it anymore. All Evan wants is to be able to sit wherever he wants on the bus and with his friends. All Evan wants is to be treated like everyone else. Seems a simple enough request.
My guess is the the transportation department just wants to keep Evan safe. Unfortunately, by making him sit next to an adult they have singled him out as being different in a situation where it was unnecessary. My expectation is that next week the "assigned adult" will sit in a different seat where he can be close enough to see Evan.
Friday afternoons are not productive for dealing with such issues so I'll detract my claws and wait until Monday, however, my manicure is already scheduled for Sunday.
August 27, 2010
Sigh...
Anyone who knows me, knows I am pretty much always able to put a positive spin on things. I can turn any comment into a compliment and am generally a pretty positive person. It's a gift and a curse.
Right now I'm struggling with that very thing. In the last two weeks, Evan has had two seizures that have lasted over 10 min. The scary thing is that each seizure he has is longer than the one before. Just to give a little context: A seizure that lasts over 5 min. is considered dangerous and the concern of brain damage increases with the length of the seizure. Evan is having cluster seizures (lots of little seizures a couple seconds apart) so his brain isn't constantly seizing during the full seizure. We were told not to worry unless they reach 10 min. That was several weeks ago when they were only 5 min. long. Tsk, ONLY 5 min. long seizures -- I never thought I'd write that!
Every seizure requires us to give him a rescue drug to try to make it stop and they are happening in the wee hours of the morning in his sleep. Unfortunately they are also happening while we are asleep so we have taken to having him sleep in our bed so we'll wake up. The up side: we have a glorious new king sized bed... however, I'd share a twin bed with Rob for a lifetime if we never had to deal with this again.
Sleep, I've learned, is over-rated and craziness is something to embrace.
How does Evan feel about all this? In a word: unaffected. He wakes up in the morning, gets out of bed and acts exactly the same as he does on the days he doesn't have a seizure. Sometimes his balance is a little off but that's about it. Sometimes he remembers it, sometimes he doesn't. We talk about it at breakfast and go about our routine. I suppose this is the bright side I should cling to, that Evan handles it better than us.
I just looked at him, sprawled across or bed, somehow managing to fit across the whole king and I am reminded how lucky we are. Two great kids who fill our home with love and laughter...it makes a mom proud!
Right now I'm struggling with that very thing. In the last two weeks, Evan has had two seizures that have lasted over 10 min. The scary thing is that each seizure he has is longer than the one before. Just to give a little context: A seizure that lasts over 5 min. is considered dangerous and the concern of brain damage increases with the length of the seizure. Evan is having cluster seizures (lots of little seizures a couple seconds apart) so his brain isn't constantly seizing during the full seizure. We were told not to worry unless they reach 10 min. That was several weeks ago when they were only 5 min. long. Tsk, ONLY 5 min. long seizures -- I never thought I'd write that!
Every seizure requires us to give him a rescue drug to try to make it stop and they are happening in the wee hours of the morning in his sleep. Unfortunately they are also happening while we are asleep so we have taken to having him sleep in our bed so we'll wake up. The up side: we have a glorious new king sized bed... however, I'd share a twin bed with Rob for a lifetime if we never had to deal with this again.
Sleep, I've learned, is over-rated and craziness is something to embrace.
How does Evan feel about all this? In a word: unaffected. He wakes up in the morning, gets out of bed and acts exactly the same as he does on the days he doesn't have a seizure. Sometimes his balance is a little off but that's about it. Sometimes he remembers it, sometimes he doesn't. We talk about it at breakfast and go about our routine. I suppose this is the bright side I should cling to, that Evan handles it better than us.
I just looked at him, sprawled across or bed, somehow managing to fit across the whole king and I am reminded how lucky we are. Two great kids who fill our home with love and laughter...it makes a mom proud!
August 05, 2010
Insert Expletive Here
We got home last night after several days of EEG monitoring and some medication adjusting and everything seemed to be going well. Evan's EEG was calm and I was hopeful we finally had a solid dose of meds to keep the seizures at bay.
This morning at 5:30 Evan had another seizure. (big sigh)
So tonight we upped his Keppra. Again. We have seen some improvement with this drug and as we've increased it, we've seen his seizure activity go from once a week to once every two weeks and most recently 2 1/2 weeks between seizures. Our fingers are crossed that with this increase we will have seizure control.
This morning at 5:30 Evan had another seizure. (big sigh)
So tonight we upped his Keppra. Again. We have seen some improvement with this drug and as we've increased it, we've seen his seizure activity go from once a week to once every two weeks and most recently 2 1/2 weeks between seizures. Our fingers are crossed that with this increase we will have seizure control.
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