Now that I have your attention, I am NOT pregnant! Evan has been approved to receive a service dog that will be trained as a Seizure Assistance Dog. It will probably be roughly a year before this all happens but we are very excited about it.
The first thing we have to do is fulfill a fundraising commitment to 4 Paws for Ability who will train a dog specifically for Evan. We will be raising $13,000 and have just begun this endeavor.
If you want to keep us with our progress, we have a blog set up and you can sign up to get email updates as well:
www.dog4evan.com
I know that this marks the beginning of a new chapter and we are all very excited about it!
July 10, 2011
June 30, 2011
Who is Evan?
If I had to use one word to describe Evan, I’d choose comedian. He loves to tell jokes and make people laugh and his comedic timing is beyond his age. He is also charming, sensitive, thoughtful, active, smart and extremely social. He loves Pokémon, riding his bicycle, playing video games and reading. He adores his older sister and the two have a very close relationship.
Evan’s doctors, therapists and teachers use different words to describe him: Tuberous Sclerosis, Epilepsy, Retractable Seizures, Cortical Tubers, Angiomyolipmoma, hypomelanotic macules, Processing Disorder, Hemiperesis, Increased Tone, Pronation...
Both descriptions are correct but we strive to provide an upbringing for Evan that will not define him by his disorders. We are well aware of how they impact him on a daily basis, but he is so much more than the sum of his challenges.
April 11, 2011
"Only" 5 Minutes
This morning Evan had a seizure and I was on my own because Rob is at the American Academy of Neurology conference. It was not really that big of a deal that I was alone because we've done this so many times, but I know Rob felt guilty for being away. He shouldn't because there is nothing that he could have done to change the events if he were here, but I guess that's just part of being a parent -- a really good parent.
I talked to Rob after the seizure had stopped and Evan was sleeping peacefully. Later I thought about how odd our conversation had been. The seizure "only" lasted about 5 min and I gave "just" one dose of rescue meds to stop the seizure. It has been 17 days since his last seizure and we commented on how great that was too. None of this is good, in fact, it's pretty bad. Yes, it's an improvement and we're happy to see that but this is not a good situation.
I hate the feeling of chasing after the illusive ideal of seizure freedom. I hate epilepsy and all the challenges and restrictions it brings to my family. I am fearful of what it will do to Evan if we can't get in front of the seizures and the effects it will have on Aria as she watches from the sidelines.
I got Aria off to school and then waited quietly for Evan to wake up. When he did he was feeling great. He was in a cheerful, talkative mood and went to school at 10:00. When I dropped him off he was chatting dramatically with the school secretary as she escorted him to class. He told me when he shows up late to school after having a seizure everyone is happy to see him and shouts, "Evan's Here!"
I talked to Rob after the seizure had stopped and Evan was sleeping peacefully. Later I thought about how odd our conversation had been. The seizure "only" lasted about 5 min and I gave "just" one dose of rescue meds to stop the seizure. It has been 17 days since his last seizure and we commented on how great that was too. None of this is good, in fact, it's pretty bad. Yes, it's an improvement and we're happy to see that but this is not a good situation.
I hate the feeling of chasing after the illusive ideal of seizure freedom. I hate epilepsy and all the challenges and restrictions it brings to my family. I am fearful of what it will do to Evan if we can't get in front of the seizures and the effects it will have on Aria as she watches from the sidelines.
I got Aria off to school and then waited quietly for Evan to wake up. When he did he was feeling great. He was in a cheerful, talkative mood and went to school at 10:00. When I dropped him off he was chatting dramatically with the school secretary as she escorted him to class. He told me when he shows up late to school after having a seizure everyone is happy to see him and shouts, "Evan's Here!"
December 14, 2010
The Toughest Question
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.
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.
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.
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