Tuesday, September 24, 2013
As I'm sitting here, typing this out on my iPhone in a hospital waiting room in Ft. Worth, Texas, Liz is having a MRI ran on her brain. Nothing bad happened to lead us here. In fact, this has been scheduled for six months, and she has her check up with Dr. H this afternoon. It's just...any time that she has to be sedated, any time that she has to have any invasive medical procedure done, I'm scared, sad, resentful, and a crying mess.
Let's be clear, I know it could be so much worse, but I can't help the fear. I just want this horrible condition to go away and leave everyone alone. Epilepsy steals things from you, especially when you've let your guard down. There's no words for the level of hatred I possess towards epilepsy.
Liz asked me to wear my Epilepsy Stinks shirt today. How on earth could I say no?
Wednesday, May 29, 2013
New Article
When Lizzie was about two and a half years old, she was put on Valproic Acid (Depakote) to control her seizures. It worked for about two and a half years, and then she had to go off of it because she entered into medicine toxicity. It was a pretty traumatizing event, and I've looked at Valproic Acid like it's the devil ever since.
Today I read an article that links Valproic Acid to reduction of brain volume. We noticed cognitive delay starting to develop about six months after Lizzie started taking Valproic Acid. After reading this article, it makes total sense.
Link to article is here.
Today I read an article that links Valproic Acid to reduction of brain volume. We noticed cognitive delay starting to develop about six months after Lizzie started taking Valproic Acid. After reading this article, it makes total sense.
Link to article is here.
Tuesday, May 28, 2013
On the R-Word.
“Hey, Ms. N, what’s wrong with your fan?” I look to the fan in my classroom that he’s talking about, and I can’t find anything wrong with it. The student says, “It looks autistic. You know…retarded.”
In my mind, I’m thinking, “Really? You chose to say that?” The other students have started to chastise him, and I’ll take a moment later to be proud of them for that. I take a really deep breath to calm myself, and I address the student.
“You probably shouldn’t say things like that-, “I start.
“Oh, I didn’t mean it badly. Like, if another kid is being mean to a kid that has special issues, I’m going to stand up for that kid.”
“But you did mean it badly. You were insinuating that my fan is in some way stupid or deformed, and instead of saying that, you chose the words ‘retarded’ and ‘autistic’. You see, my daughter is autistic. There’s nothing stupid or deformed about her. Using those words to mean stupid or deformed is unacceptable, and until you can increase your vocabulary, you’re just as bad as someone that is being mean to a kid with ‘special issues’ because you’re continuing a belief that those people are somehow less than everyone else. Improve your vocabulary. Don’t let me hear you say that again.”
He continues to try to explain why what he said is okay. I interrupt him again.
“Look, you’re taking a word that describes a person that had no choice over his/her lot in life, and you’re making that word mean something different than it should. You’re taking a word that in the past has meant ‘special needs’ and you’re making it into something negative. It’s not okay. Change your perspective, and change your vocabulary.”
Another student looks at him and says, “I told you. “
I know this is an issue that’s been around for awhile. I mean, there’s an initiative to end the use of the word “retarded” as a way to describe something as stupid (http://www.r-word.org/). It’s not okay. Ever. There’s this widespread belief in the world that we need to teach tolerance.
Here’s my question: Why don’t we teach acceptance instead?
If we’re preaching/teaching tolerance, there’s an underlying thread of thought that suggests that what you’re tolerating is somehow wrong. Are autistic children wrong in their existence? What about people with Down’s Syndrome? Addison’s disease? Doose Syndrome? Epilepsy? There is nothing wrong with these people’s existence, and teaching people to tolerate these issues feels wrong to me.
Lizzie is struggling with this right now. She’s being bullied at school, and I know she wishes that her classmates would just accept her. Heck, for all my preaching about teaching tolerance, I think she’d welcome their tolerance if it meant they’d leave her alone.
In my mind, I’m thinking, “Really? You chose to say that?” The other students have started to chastise him, and I’ll take a moment later to be proud of them for that. I take a really deep breath to calm myself, and I address the student.
“You probably shouldn’t say things like that-, “I start.
“Oh, I didn’t mean it badly. Like, if another kid is being mean to a kid that has special issues, I’m going to stand up for that kid.”
“But you did mean it badly. You were insinuating that my fan is in some way stupid or deformed, and instead of saying that, you chose the words ‘retarded’ and ‘autistic’. You see, my daughter is autistic. There’s nothing stupid or deformed about her. Using those words to mean stupid or deformed is unacceptable, and until you can increase your vocabulary, you’re just as bad as someone that is being mean to a kid with ‘special issues’ because you’re continuing a belief that those people are somehow less than everyone else. Improve your vocabulary. Don’t let me hear you say that again.”
He continues to try to explain why what he said is okay. I interrupt him again.
“Look, you’re taking a word that describes a person that had no choice over his/her lot in life, and you’re making that word mean something different than it should. You’re taking a word that in the past has meant ‘special needs’ and you’re making it into something negative. It’s not okay. Change your perspective, and change your vocabulary.”
Another student looks at him and says, “I told you. “
I know this is an issue that’s been around for awhile. I mean, there’s an initiative to end the use of the word “retarded” as a way to describe something as stupid (http://www.r-word.org/). It’s not okay. Ever. There’s this widespread belief in the world that we need to teach tolerance.
Here’s my question: Why don’t we teach acceptance instead?
If we’re preaching/teaching tolerance, there’s an underlying thread of thought that suggests that what you’re tolerating is somehow wrong. Are autistic children wrong in their existence? What about people with Down’s Syndrome? Addison’s disease? Doose Syndrome? Epilepsy? There is nothing wrong with these people’s existence, and teaching people to tolerate these issues feels wrong to me.
Lizzie is struggling with this right now. She’s being bullied at school, and I know she wishes that her classmates would just accept her. Heck, for all my preaching about teaching tolerance, I think she’d welcome their tolerance if it meant they’d leave her alone.
Thursday, May 2, 2013
Life Goes On, Doesn't It?
Life really does plug along, doesn't it? Daily life keeps happening, regardless of what's going on in your personal life. That's not to say that people don't care that you've been through something traumatic. They do, but they've got their own stuff to deal with, too. The hardest part after this last bought of seizures has been learning to live as if our hearts hadn't just been ripped out of our chests.
Let me say this, though. Liz is fine. She's handled this better than I can even put into words. There have been days when she has had lots of questions, but that's completely normal. We bought two books to help her understand her seizure disorder, and we read them together. The first is called Mommy, I Feel Funny by Danielle M. Rocheford. I'd read about this book on the Epilepsy Foundation's parents' forum, and I knew that if she continued to have seizures when she got older, then that would be a definite purchase.
It was a fantastic book, and it helped her understand what happens to her during her seizures. It also helped her understand that there are always people around her that will take care of her. If you have a child with a seizure disorder, this book is an absolute must-have for your personal library.
We also purchased, Taking Seizure Disorders to School: A Story About Epilepsy by Kim Gosselin. We read this one together, too. It's geared towards an elementary school classroom. I put her name in it, and sent it to school, since her nurse and school counselor were planning on speaking with her class to help them understand what goes on with her.
Let me say this, though. Liz is fine. She's handled this better than I can even put into words. There have been days when she has had lots of questions, but that's completely normal. We bought two books to help her understand her seizure disorder, and we read them together. The first is called Mommy, I Feel Funny by Danielle M. Rocheford. I'd read about this book on the Epilepsy Foundation's parents' forum, and I knew that if she continued to have seizures when she got older, then that would be a definite purchase.
It was a fantastic book, and it helped her understand what happens to her during her seizures. It also helped her understand that there are always people around her that will take care of her. If you have a child with a seizure disorder, this book is an absolute must-have for your personal library.
We also purchased, Taking Seizure Disorders to School: A Story About Epilepsy by Kim Gosselin. We read this one together, too. It's geared towards an elementary school classroom. I put her name in it, and sent it to school, since her nurse and school counselor were planning on speaking with her class to help them understand what goes on with her.
As for the rest of us, I think that our sense of peace and normalcy has been taken from us. Adjusting to our new normal is going to be the hardest thing about all of this. I don't think I'd forgotten how things were when she was younger. I think I became complacent. I know I couldn't have done anything to stop that seizure from happening, but it would have been nice to not have been so blindsided by it. As for The Husband, he's still learning, but he's doing great. When he became a permanent part of our lives, Liz had been healthy for awhile, and aside from an event five years ago and few break through seizures here and there, he hadn't seen what her seizures really look like. It was baptism by fire.
It was five weeks yesterday. Here's to five more.
Wednesday, April 10, 2013
Two Weeks
And so the new count of days since the last seizure has begun. It has been fourteen days.
The question I get often now is, "So, she's okay now?" Every single time I say yes I feel like I'm lying. Is she okay now? Right now in this very second, yes, she's fine. Is she cured? No, she's not. This will probably happen again. That's not what people want to hear, though, is it?
I mean, I get it. No one wants to hear about sick kids, so when they ask if she's okay, they need to hear yes more than anything. Right now she's absolutely amazing and fantastic. She's beautiful and golden. Her spirit is strong, and her personality is fun. The thing that I'm struggling the most with right now is going back to living with the fear of what's next. Please understand that we're not living IN fear. We're living WITH it. It's currently occupying the raw hole in hearts that was ripped open two weeks ago. It's our new best friend.
Fear is good, though. We're on alert. Hopefully we won't be caught unaware again. That's the worst part, I think. Well, that and not being able to find out the cause. I'd love to be able to hook her up to machine and identify a cause, and then remove the cause.
She wants a bowling birthday party. I think we're going to make it happen.
The question I get often now is, "So, she's okay now?" Every single time I say yes I feel like I'm lying. Is she okay now? Right now in this very second, yes, she's fine. Is she cured? No, she's not. This will probably happen again. That's not what people want to hear, though, is it?
I mean, I get it. No one wants to hear about sick kids, so when they ask if she's okay, they need to hear yes more than anything. Right now she's absolutely amazing and fantastic. She's beautiful and golden. Her spirit is strong, and her personality is fun. The thing that I'm struggling the most with right now is going back to living with the fear of what's next. Please understand that we're not living IN fear. We're living WITH it. It's currently occupying the raw hole in hearts that was ripped open two weeks ago. It's our new best friend.
Fear is good, though. We're on alert. Hopefully we won't be caught unaware again. That's the worst part, I think. Well, that and not being able to find out the cause. I'd love to be able to hook her up to machine and identify a cause, and then remove the cause.
She wants a bowling birthday party. I think we're going to make it happen.
Tuesday, April 2, 2013
Twenty-Five Months and Nine Days
Twenty-five months and nine days. Don’t worry…this isn’t Rent. I’m not going to break into song while simultaneously offering you the minutes, and then ask you what can be accomplished in that time. No, that was the amount of time that my daughter had been seizure-free. During that time, we became accustomed to a “normal” life. I put normal in quotation marks because it’s such a relative term, but in this case, I think it works.
We didn’t have to worry about making sure we brought the rescue meds and care notebook every time we left the house. We didn’t have to worry about her having a seizure at school. We did family things that we’d never been able to do before, like take really long car trips without fear of how it would affect her seizure threshold. She ate junk food, and stayed up late watching Doctor Who. We freaked out her daddy when we bought her first bra. She got over her love of Justin Bieber, and developed an unhealthy crush on Zak Bagans from Ghost Adventures. I didn’t worry about her ever single second that she was away from me because, hey! We had 100% seizure control.
I guess I did do a bit of what can be accomplished in two years, one month, and nine days. Sorry.
Last week we had our six month check up with her neurologist. Last fall at her appointment, Dr. H said that if we went for six months without a seizure and if her EEG in the spring was normal, then we’d have a discussion about weaning her off of meds. We celebrated because it was huge news, and please understand that we’re still thankful for the two years of no seizures that she had. Going in to this appointment, I expected no problems. I’m sorry to say that I was a bit smug with it. I expected that her EEG would be normal because the last EEG was normal plus we had seven more months of being seizure-free.
Her EEG showed abnormality in the frontal lobes. It was unusual and concerning because in previous EEGs showing abnormality were different, with it being located in a different area. Dr. H told us that it didn’t change her diagnosis, and that she couldn’t go off medication until she had a normal EEG, which we assumed anyway. He said that it might just be a simple case of her brain catching up with her body, and we’d repeat the EEG in a year.
Leaving the appointment, I felt sick to my stomach. I just felt that there was more to it, and so I was probably a little more anxious about her health than normal. After talking to my husband on the way home from her appointment, I found that he felt the same way. We were both really worried about her.
The next day I was sitting in my third period class talking to my students and the student-teacher I have working with me this semester. At 10:59, my phone rang, and the nurse’s office from my daughter’s school showed on the caller ID. I just knew immediately that something was wrong. I answered the phone as my student-teacher took over my class. The nurse told me that Lizzie was in her office, and that she was complaining of all-over body pain, and she said she felt like there were “rattlesnakes in [her] arms.” I asked to speak to Lizzie, and I asked her about her pain. She also told me that her arms were very stiff, and her head really hurt. I told her nurse that I’d call my husband, since he’s closer, and he’d pick her up.
The Husband took her the emergency room at our local children’s hospital, and I made arrangements for my afternoon classes. I got there about fifteen minutes after they were checked in. When I got into her room, she was fine. The pain receded, and she could move her arms. I confess that I thought she was making it up to get out of school, but as I questioned her, I came to believe that she hadn’t been making it up. The nurses came into her room to do a blood draw, and to put in an IV. She was very upset and scared of the needle, and so she became very hot and sweaty as she cried. We calmed her down after it was done, and we were all sitting there talking. I asked her a question, and she didn’t respond. I called her name twice, and she still didn’t respond. I moved to her bed and said, “With everything that’s going on, you need to answer me when I ask you a question. Do you understand?” I could have been talking to a table for all the good it did. She simply wasn’t there. I realized what was going on about the time that she started to have a seizure. It presented in a way that was new to her. Her head turned to the left, but her eyes stayed facing front. Her head began to rapidly nod up and down, and her eyes started to move from one side to the other. Her arms and legs began to draw inwards, and she lay on her side, assuming a fetal position.
I told The Husband to call for help, and as he pressed the call button on her remote and they answered, I yelled, “SHE’S HAVING A SEIZURE!!” The room filled with nurses, EMTs, and two doctors. They began to give her rescue meds (versed and ativan). Her seizure wouldn’t stop, so they moved her into one of the trauma rooms. This went on for well over an hour and half. One of the doctors stepped away and told me that he was concerned that all the rescue meds were masking more seizure activity, and he was concerned that she was having a subclinical status event. He asked us for permission to use propofol and phenobarbital on her to get the seizure to stop and relax her. He then told us that she’d have to be intubated because of the medications.
It was then that I suggested that because her regular doctors were in Ft. Worth, maybe transporting her would be a good idea because of continuity of care. The ER doctors completely agreed with me. Please understand that it had nothing to do with me worrying about the quality of care she would have received locally. I have no doubt that she would have received excellent care. She just needed to be moved where her regular specialists are located.
The helicopter landed at 3:30 that afternoon, but it took an hour and half to make sure she was stable enough for the flight back. The helicopter took off at 5:00. She was admitted directly into the PICU at Cook Children’s in Ft. Worth. Her doctor called me about 6:15, and told me that he didn’t believe it was a subclinical status event, but he did believe it was status epilepticus, which is an unending seizure that requires major medical intervention through rescue drugs to stop it. It is always a medical emergency. He said that he would begin taking her off the propofol at 7:00, and let her wake up from the coma naturally. He said that once she was awake and it was clear that she could breathe on her own, and then her intubation tube would be removed.
She woke up at about 2:00 AM the next day. Her intubation tube was removed, and she continued to breathe on her own. She woke up for good around 7:00 AM. She needed to use the restroom, and tried to get up on her own. When we tried to tell her that she wasn’t strong enough yet, and she needed to go in her “hospital pants”, she yelled, “I WANT TO POTTY LIKE A CHAMPION!!!!!!” It was the first real laugh we’d experienced in hours.
She was moved to a private room at around 3:00 that afternoon, and she continued to improve. She ate four full meals that day, and was able to take her regular medicine in pill form. The next day my sister drove in, and Lizzie continued to improve. We took her to the Build-A-Bear Workshop and to the hospital-sponsor Easter egg hunt in the gardens.
She was released on Saturday afternoon, and we were given a prescription for Diastat, a rescue medication that we could give her at home or at school. I met with her campus leaders this morning, and we amended her seizure action plan. I spoke with her afterschool care providers, and made them aware of the situation. I’m going to provide them with a separate seizure action plan for her.
So, that’s the situation. As I’ve told people what happened, the question I hear the most is why. Why did this happen? What are they going to do make sure it doesn’t happen again? When are they going to find a cure for her?
I don’t know why this happened. We increased her medications, and the only way we’ll know it worked is if she doesn’t have any more seizures. I don’t know when they’ll find a cure. The government doesn’t give us nearly the money for research that they put towards cancer and HIV/AIDS. Most money spent on epilepsy research is raised privately through the Epilepsy Foundation or CURE. No, it’s not a perfect system, and yes, you’d think modern medicine could do better than that. I know. Believe me, I know.
She went back to school this morning, and while I know she’ll be safe there because they know how to take care of her, I’m filled with worry for her. I’m so afraid of what this means for our future. To stand there as your child has a seizure and to feel so helpless….it’s the worst feeling in the world.
So, there you have it.
We didn’t have to worry about making sure we brought the rescue meds and care notebook every time we left the house. We didn’t have to worry about her having a seizure at school. We did family things that we’d never been able to do before, like take really long car trips without fear of how it would affect her seizure threshold. She ate junk food, and stayed up late watching Doctor Who. We freaked out her daddy when we bought her first bra. She got over her love of Justin Bieber, and developed an unhealthy crush on Zak Bagans from Ghost Adventures. I didn’t worry about her ever single second that she was away from me because, hey! We had 100% seizure control.
I guess I did do a bit of what can be accomplished in two years, one month, and nine days. Sorry.
Last week we had our six month check up with her neurologist. Last fall at her appointment, Dr. H said that if we went for six months without a seizure and if her EEG in the spring was normal, then we’d have a discussion about weaning her off of meds. We celebrated because it was huge news, and please understand that we’re still thankful for the two years of no seizures that she had. Going in to this appointment, I expected no problems. I’m sorry to say that I was a bit smug with it. I expected that her EEG would be normal because the last EEG was normal plus we had seven more months of being seizure-free.
Her EEG showed abnormality in the frontal lobes. It was unusual and concerning because in previous EEGs showing abnormality were different, with it being located in a different area. Dr. H told us that it didn’t change her diagnosis, and that she couldn’t go off medication until she had a normal EEG, which we assumed anyway. He said that it might just be a simple case of her brain catching up with her body, and we’d repeat the EEG in a year.
Leaving the appointment, I felt sick to my stomach. I just felt that there was more to it, and so I was probably a little more anxious about her health than normal. After talking to my husband on the way home from her appointment, I found that he felt the same way. We were both really worried about her.
The next day I was sitting in my third period class talking to my students and the student-teacher I have working with me this semester. At 10:59, my phone rang, and the nurse’s office from my daughter’s school showed on the caller ID. I just knew immediately that something was wrong. I answered the phone as my student-teacher took over my class. The nurse told me that Lizzie was in her office, and that she was complaining of all-over body pain, and she said she felt like there were “rattlesnakes in [her] arms.” I asked to speak to Lizzie, and I asked her about her pain. She also told me that her arms were very stiff, and her head really hurt. I told her nurse that I’d call my husband, since he’s closer, and he’d pick her up.
The Husband took her the emergency room at our local children’s hospital, and I made arrangements for my afternoon classes. I got there about fifteen minutes after they were checked in. When I got into her room, she was fine. The pain receded, and she could move her arms. I confess that I thought she was making it up to get out of school, but as I questioned her, I came to believe that she hadn’t been making it up. The nurses came into her room to do a blood draw, and to put in an IV. She was very upset and scared of the needle, and so she became very hot and sweaty as she cried. We calmed her down after it was done, and we were all sitting there talking. I asked her a question, and she didn’t respond. I called her name twice, and she still didn’t respond. I moved to her bed and said, “With everything that’s going on, you need to answer me when I ask you a question. Do you understand?” I could have been talking to a table for all the good it did. She simply wasn’t there. I realized what was going on about the time that she started to have a seizure. It presented in a way that was new to her. Her head turned to the left, but her eyes stayed facing front. Her head began to rapidly nod up and down, and her eyes started to move from one side to the other. Her arms and legs began to draw inwards, and she lay on her side, assuming a fetal position.
I told The Husband to call for help, and as he pressed the call button on her remote and they answered, I yelled, “SHE’S HAVING A SEIZURE!!” The room filled with nurses, EMTs, and two doctors. They began to give her rescue meds (versed and ativan). Her seizure wouldn’t stop, so they moved her into one of the trauma rooms. This went on for well over an hour and half. One of the doctors stepped away and told me that he was concerned that all the rescue meds were masking more seizure activity, and he was concerned that she was having a subclinical status event. He asked us for permission to use propofol and phenobarbital on her to get the seizure to stop and relax her. He then told us that she’d have to be intubated because of the medications.
It was then that I suggested that because her regular doctors were in Ft. Worth, maybe transporting her would be a good idea because of continuity of care. The ER doctors completely agreed with me. Please understand that it had nothing to do with me worrying about the quality of care she would have received locally. I have no doubt that she would have received excellent care. She just needed to be moved where her regular specialists are located.
The helicopter landed at 3:30 that afternoon, but it took an hour and half to make sure she was stable enough for the flight back. The helicopter took off at 5:00. She was admitted directly into the PICU at Cook Children’s in Ft. Worth. Her doctor called me about 6:15, and told me that he didn’t believe it was a subclinical status event, but he did believe it was status epilepticus, which is an unending seizure that requires major medical intervention through rescue drugs to stop it. It is always a medical emergency. He said that he would begin taking her off the propofol at 7:00, and let her wake up from the coma naturally. He said that once she was awake and it was clear that she could breathe on her own, and then her intubation tube would be removed.
She woke up at about 2:00 AM the next day. Her intubation tube was removed, and she continued to breathe on her own. She woke up for good around 7:00 AM. She needed to use the restroom, and tried to get up on her own. When we tried to tell her that she wasn’t strong enough yet, and she needed to go in her “hospital pants”, she yelled, “I WANT TO POTTY LIKE A CHAMPION!!!!!!” It was the first real laugh we’d experienced in hours.
She was moved to a private room at around 3:00 that afternoon, and she continued to improve. She ate four full meals that day, and was able to take her regular medicine in pill form. The next day my sister drove in, and Lizzie continued to improve. We took her to the Build-A-Bear Workshop and to the hospital-sponsor Easter egg hunt in the gardens.
She was released on Saturday afternoon, and we were given a prescription for Diastat, a rescue medication that we could give her at home or at school. I met with her campus leaders this morning, and we amended her seizure action plan. I spoke with her afterschool care providers, and made them aware of the situation. I’m going to provide them with a separate seizure action plan for her.
So, that’s the situation. As I’ve told people what happened, the question I hear the most is why. Why did this happen? What are they going to do make sure it doesn’t happen again? When are they going to find a cure for her?
I don’t know why this happened. We increased her medications, and the only way we’ll know it worked is if she doesn’t have any more seizures. I don’t know when they’ll find a cure. The government doesn’t give us nearly the money for research that they put towards cancer and HIV/AIDS. Most money spent on epilepsy research is raised privately through the Epilepsy Foundation or CURE. No, it’s not a perfect system, and yes, you’d think modern medicine could do better than that. I know. Believe me, I know.
She went back to school this morning, and while I know she’ll be safe there because they know how to take care of her, I’m filled with worry for her. I’m so afraid of what this means for our future. To stand there as your child has a seizure and to feel so helpless….it’s the worst feeling in the world.
So, there you have it.
Thursday, March 28, 2013
Let's Pretend
Want to play a game? Great. Pretend your child has epilepsy, but is 100% controlled on medication. Then pretend that your child has an EEG ran, and it's abnormal. Got it? Great. Now, pretend that the next day your child has a status epilepticus event that lasts well over an hour, and massive medical intervention is required to stop it. Now, pretend that your child was put into a coma and flown to a hospital two hundred miles away.
That was my daughter today.
That was my daughter today.
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