By the end of the week, my family will be coming off of the adrenaline that is created when my daughter enters another health emergency. On Wednesday, she will be having another surgery to remove the kidney stone and the stint that was put in her last week. By Thursday she'll be in recovery mode, and by Monday she will be normal again. We'll all breathe a giant sigh of relief, and we'll carry on from here. Well-meaning people will say things like, "Wow!! I'm sorry she went through all of that!! Hopefully that will be the last time anything like that happens." I will respond back with something like, "I hope so, " and we'll move on because, let's face it, they won't want to hear the truth that we'll face something like this again, or possibly worse. That's just how epilepsy rolls.
We will have periods of peace where she will be in good health. The meds will be working, and she'll have seizure control. School will go on like always, and she'll make progress. And we will love all of those moments. We'll hold them dear to us, and treasure them always. Don't ever think we take those moments for granted because they are a gift to us.
But let's face reality, shall we? We'll face another health crisis. It may or may not be worse than this one, and it will have our family realing. We'll wonder why she has to go through so much, and when enough is enough. And through those moments of peace, she'll get sick with a cold or strep, and it will be a huge deal because we won't know if a seizure is coming along for the ride. It's never JUST a cold or JUST a strep infection. It's a cold/strep with the possibility of a seizure.
And what if a seizure does happen? We have to look and see what the trigger was. Was she sick? That's easily explained, and we'll probably do a slight medicine adjustment. What if there wasn't anything obvious? That's a bigger medicine change and an EEG. What if the medicine doesn't work? Well, that's a bigger issue altogether.
I hold so much hope. I'm probably one of the most optimistic people you'll ever meet, but I'm also a realist when it comes to this. I appreciate the hope that she'll grow out of this someday because I hope the same thing. I pray for it daily. I also know that the likelihood of that happening is low. She responds relatively well to treatment, but if for some reason her medicine levels get low, she has a seizure. She'll probably be medicated for epilepsy for the rest of her life.
I know why most people will hope that this doesn't happen again, and why they so desperately need to hear that she'll probably grow out of this. I get it. It is hard to comprehend that she will carry this with her for the rest of her life, and this little event won't be the last time that we get on a first name basis with the doctors at Scott & White. It wears on your soul if you think about it too much. It's easier to think that she'll get better from this, and be completely healthy in her adult life. Please believe that I want that more than anything else on this planet.
I want you to understand what it means to have epilepsy. It's not just the seizures and the medications to control them. It's the side effects of those medications. It's the weakened immune systems because of the medications. It's the brain damage from the seizures. It's the three-inch thick binder that's full of your child's medical history. It's the thirty-seven minute seizures that lead to days in the ICU. It's the ambulance rides. It's the helicopter rides. It's the fear of the common cold and what it will bring to your child. It's the list of doctors your child has to see just to maintain status quo. It's the fights with the schools. It's the closed minds of people in public when your child is having a meltdown that may or may not be related to seizures or the medication. It's the hundreds of dollars spent monthly on medications. It's the hours of research you do to understand what your child is going through. It's the late nights when you're holding your child because she is in so much pain from who-knows-what. It's fighting tears when all you want to do is cry because you have to be strong for your child. It's the quiet moments you steal in the shower so that you can cry by yourself. It's the fifteen doctors on speed dial versus the four or five regular life people. It's the checking on your child compulsively in the middle of the night because you're afraid of nocturnal seizures. It's the night terrors where you're chasing your child down the hallway in your house because she is heading out the front door. It's the ER visits that last fifteen hours long. It's knowing more about your child's conditions than most specialists around. It's fighting to be taken seriously by those specialists.
It's the moments of peace and happiness that you treasure and look back on when things are crappy. It's the handful of people that really "get it." It's hope. It's understanding. It's awareness. It's being thankful because even though things really suck, it's not cancer or something else as equally as terrible and frightening. It's finding the strength you didn't know you had to carry on for your familly. It's the reflecting on your experiences, and what the future means, and knowing that the beginning of this little journey is a lot closer than the end.
Sunday, December 26, 2010
Wednesday, December 22, 2010
Okay, so....
Gosh...I don't even know where to start.
On Monday night, I had to take my daughter to the hospital due to extreme stomach pain and vomiting. I honestly thought she had a virus, but with her and the fact that she has epilepsy, you really can't be too careful. I'll spare you the details of the next thirteen hours, but the diagnosis after all of that was a kidney stone in her right kidney. Approximately 5 mm in diameter, and it had lodged itself in the opening to the tube that drains her kidney into her bladder. Consequently, her kidney was filling up with fluid and leaking into her body, causing her body to become sick.
A stone similar to the one my daughter has.
Up until Monday night, my daughter had been on Zonegran. One of the rare side effects is kidney stones. (I won't mention that in the last few months, my daughter has experienced several bathroom accidents, and every time I took her to the doctor and said I really thought she had a kidney stone, I was told I was wrong.)
First and foremost, this is an argument for being informed and educated about the side effects of all medications. ALWAYS, ALWAYS, ALWAYS BE AWARE!! Second of all, this is an argument for being more assertive with doctors about the fact that sometimes the parent really does know best, and I'm not some freak with a need for attention. I could have ended this months ago if I had put my foot down, and let the doctors know I was not going to be dismissed.
Finally, this is a chance for me to explain that this is just as much related to her diagnosis of epilepsy as her seizures are. The fact of the matter is that if she didn't have epilepsy, she wouldn't have had a kidney stone. To treat them as separate medical issues that aren't related would be wrong.
She's being placed on Tegretol. The pediatric attending at the hospital told me it was a sister drug to Trileptal, which scared the bejeezus out of me. She'd been on Trileptal before, and it was a horrible experience for us. Her seizures increased from a few every six to eight weeks to a few a day nearly every day of the week, and I feel that Trileptal is to blame partially for that. It also could have been the natural progression of her condition, too.
The last thirty-six hours have been wearing. We're all exhausted, even though my daughter is doing so much better. We're also all scared of what this medication change could mean for us. Will it bring back uncontrolled seizures? If it does, will she start losing development again? We've made so much progress the last few years, and the thought of losing it all again scares me senseless.
On Monday night, I had to take my daughter to the hospital due to extreme stomach pain and vomiting. I honestly thought she had a virus, but with her and the fact that she has epilepsy, you really can't be too careful. I'll spare you the details of the next thirteen hours, but the diagnosis after all of that was a kidney stone in her right kidney. Approximately 5 mm in diameter, and it had lodged itself in the opening to the tube that drains her kidney into her bladder. Consequently, her kidney was filling up with fluid and leaking into her body, causing her body to become sick.
A stone similar to the one my daughter has.She had a stint put in yesterday to help drain her kidney, and some time in the next couple of weeks, she'll be having another surgery to remove the stone, and take out the stint.
Why am I putting this in an epilepsy blog? EXCELLENT QUESTION!!
Up until Monday night, my daughter had been on Zonegran. One of the rare side effects is kidney stones. (I won't mention that in the last few months, my daughter has experienced several bathroom accidents, and every time I took her to the doctor and said I really thought she had a kidney stone, I was told I was wrong.)
First and foremost, this is an argument for being informed and educated about the side effects of all medications. ALWAYS, ALWAYS, ALWAYS BE AWARE!! Second of all, this is an argument for being more assertive with doctors about the fact that sometimes the parent really does know best, and I'm not some freak with a need for attention. I could have ended this months ago if I had put my foot down, and let the doctors know I was not going to be dismissed.
Finally, this is a chance for me to explain that this is just as much related to her diagnosis of epilepsy as her seizures are. The fact of the matter is that if she didn't have epilepsy, she wouldn't have had a kidney stone. To treat them as separate medical issues that aren't related would be wrong.
She's being placed on Tegretol. The pediatric attending at the hospital told me it was a sister drug to Trileptal, which scared the bejeezus out of me. She'd been on Trileptal before, and it was a horrible experience for us. Her seizures increased from a few every six to eight weeks to a few a day nearly every day of the week, and I feel that Trileptal is to blame partially for that. It also could have been the natural progression of her condition, too.
The last thirty-six hours have been wearing. We're all exhausted, even though my daughter is doing so much better. We're also all scared of what this medication change could mean for us. Will it bring back uncontrolled seizures? If it does, will she start losing development again? We've made so much progress the last few years, and the thought of losing it all again scares me senseless.
Thursday, December 2, 2010
Treatments for Epilepsy
Good morning!!
As I've mentioned before, there is no cure for epilepsy, but you can treat the seizures in the hope that they become controlled. I'm going to provide a bunch of links to research and information about different treatment options. I had planned on doing a blog posting about meds, the Ketogenic Diet, and surgery, but why re-invent the wheel? ;-)
As I've mentioned before, there is no cure for epilepsy, but you can treat the seizures in the hope that they become controlled. I'm going to provide a bunch of links to research and information about different treatment options. I had planned on doing a blog posting about meds, the Ketogenic Diet, and surgery, but why re-invent the wheel? ;-)
- Medications- This is the first step towards achieving seizure control. In a perfect world, the first medicine would work, and you'd never experience another seizure ever again. Unfortunately, this isn't the case. In most situations, seizures will continue to occur until therepeutic levels are reached for the medicine. The best way to measure this is blood work. The doctor will order it, and it will measure how much of the medicine is in your blood after being metabolized. Once it reaches a certain level, the doctor will not increase the medicine unless another seizure occurs. As with all medications, if you take too much, it can hurt your body. Additionally, you have to consider the possibility that the first medication won't be successful in controlling seizures. If it isn't, you may discontinue use of that medication, and then start a new one, OR you may be prescribed an additonal medication. Eight out of ten people achieve seizure control when on two or more medications. My daughter is on three medications to control her seizures: Zonegran, Banzel, and Klonopin. She's only experienced two seizures this year, so I consider her seizures to be controlled for now.
- Ketogenic Diet- I kind of think of the Ketogenic Diet as the Atkins Diet for epilepsy. It's very low in carbs, and very high in fats and proteins. In all the research that I've done on it, I've never found a doctor that can explains why this diet works. I have seen that in children that are on the diet, two out of three have decreased seizures, and one out of three achieve seizure control. Please note that the diet is a whole family commitment, and it has to be monitored by a medical team. Please don't just decide you want to try it, and then do it. Talk to your doctor, and do it right. :)
- VNS Implant- This is almost like a pacemaker for the brain. I've known people that have been on up to thirty-four pills a day to control their seizures, and once having the VNS done, they reduced to no more than six to ten. It is really, really amazing.
- Surgery- This would be to remove the section of the brain that is causing the seizures. I consider this to be the last option for seizure control, though I can understand why people consider it. It has never been an option for us since my daughter's doctor has been concerned that some of her seizures start out as generalized rather than in one section of the brain and spreading.
Wednesday, December 1, 2010
How is epilepsy diagnosed?
For all my talk of epilepsy, I haven't really discussed how a diagnosis comes to pass. Through my experiences, I've noticed that a lot of doctors are hesitant to offer up a diagnosis of epilepsy when a person is having seizures. It seems that the doctor will always look for another medical reason for the seizures to be occurring. Most of the time, that is the doctor just being thorough in his diagnosis. The doctors honestly don't want to suggest epilepsy if there is another reason why the seizures are occurring. For example, in children, if the child is experiencing a high fever, then a seizure can often be experienced. These are called febrile seizures, and in most instances, they're relatively harmless and the child will usually not experience one again.
When a person experiences two or more seizures without an obvious cause (fevers, result of a head trauma, etc.), then you're facing a diagnosis of epilepsy.
First the doctor will take a thorough medical history. You will usually be asked variations of the following questions:
•A list of any drugs you have taken, including prescribed medications and recreational drugs.
•Any medical conditions you may have been diagnosed with. Some medical conditions may cause seizures to occur.
•Any chemicals you may have come in contact with.
•Whether or not you have a family history of epilepsy.
•Any recent head trauma, infection, or fever.
The doctor will continue by asking what your seizures are like. This is one of the reasons why it is so very important to document everything you feel before, during, and after. Have the people that are with you while you are seizing document what you do during a seizure. TIME IT!! As I've mentioned before, it helps establish a pattern if you can document everything in relation to before, during and after a seizure.
You'll have blood tests run. The doctor is checking for harmful substances in your blood, your blood sugar, electrolytes, etc. Be ready for them to take several tubes.
Next step would be to have an electroencephalogram (EEG). You will have sensors attached to your head that will measure brain activity in all the areas of the brain. Each sensor will measure sections of electrical activity in the brain. If there is any abnormal brain activity, then an EEG will find it. As a side note, it is completely normal to have a normal EEG, but still have a diagnosis of epilepsy. My daughter has had hundreds of seizures, but with the exception of two or three EEGs taken immediately after seizure activity, all of her EEGs have been normal.
A head CT scan or MRI can also be ran, but that is usually to measure for any abnormal growths or brain abnormalities.
Once there is a diagnosis of epilepsy, you start the process of trying to find a medicine to treat the seizures. This could take awhile because every brain is different. The really positive thing is that there are many really good epilepsy medications available to treat seizures and maintain seizure control. If medications fail, there is also the possibility of treating the seizures via the Ketogenic Diet. Additionally, there are surgery options.
There isn't a cure for epilepsy. However, in some cases, a person can grow out of them, and after two years of having seizure control on medications, the doctor will usually begin the weening process to see if the patient can retain seizure control off of medications. We've never reached that point. We reach about 20 months of seizure control, and it never fails that my daughter has a seizure. We start the count all over again.
When a person experiences two or more seizures without an obvious cause (fevers, result of a head trauma, etc.), then you're facing a diagnosis of epilepsy.
First the doctor will take a thorough medical history. You will usually be asked variations of the following questions:
•A list of any drugs you have taken, including prescribed medications and recreational drugs.
•Any medical conditions you may have been diagnosed with. Some medical conditions may cause seizures to occur.
•Any chemicals you may have come in contact with.
•Whether or not you have a family history of epilepsy.
•Any recent head trauma, infection, or fever.
The doctor will continue by asking what your seizures are like. This is one of the reasons why it is so very important to document everything you feel before, during, and after. Have the people that are with you while you are seizing document what you do during a seizure. TIME IT!! As I've mentioned before, it helps establish a pattern if you can document everything in relation to before, during and after a seizure.
You'll have blood tests run. The doctor is checking for harmful substances in your blood, your blood sugar, electrolytes, etc. Be ready for them to take several tubes.
Next step would be to have an electroencephalogram (EEG). You will have sensors attached to your head that will measure brain activity in all the areas of the brain. Each sensor will measure sections of electrical activity in the brain. If there is any abnormal brain activity, then an EEG will find it. As a side note, it is completely normal to have a normal EEG, but still have a diagnosis of epilepsy. My daughter has had hundreds of seizures, but with the exception of two or three EEGs taken immediately after seizure activity, all of her EEGs have been normal.
A head CT scan or MRI can also be ran, but that is usually to measure for any abnormal growths or brain abnormalities.
Once there is a diagnosis of epilepsy, you start the process of trying to find a medicine to treat the seizures. This could take awhile because every brain is different. The really positive thing is that there are many really good epilepsy medications available to treat seizures and maintain seizure control. If medications fail, there is also the possibility of treating the seizures via the Ketogenic Diet. Additionally, there are surgery options.
There isn't a cure for epilepsy. However, in some cases, a person can grow out of them, and after two years of having seizure control on medications, the doctor will usually begin the weening process to see if the patient can retain seizure control off of medications. We've never reached that point. We reach about 20 months of seizure control, and it never fails that my daughter has a seizure. We start the count all over again.
Tuesday, November 30, 2010
Today
Today is the last day of Epilepsy Awareness Month. I can't believe how active this month has been. I love how many people are visiting this blog, and how many people are responding to it. I especially love how the student council in my school has become active, and passionate about epilepsy awareness. Last night, I thought to myself, "If I ONLY reach the 40 or so kids at his meeting, then I'm successful. I can be proud of my work." I'm not stopping, though. Nope. We're going to keep this train right on rolling.
Today I can look at my daughter and know that she is the healthiest that she has ever been. I can sit next to her while she is reading her library book out loud and marvel at how much she has changed and grown in the last few years. I can look at our journey, and be thankful for the bumps because it makes the smoothness so much sweeter.
I don't know when she'll have another seizure. The very thought of another one hitting terrifies me, though. It is so difficult watching your child go through something that you can't protect her from. I can keep her safe from all kinds of evils, but I can't protect her from her own brain. It's a long, long road to acceptance of that fact, and while I may be afraid of what could happen at any time, I refuse to dwell on that. I refuse to feel sorry for myself or her. We have a good life. SHE has a good life. I love embracing that.
Here's to the last day of Epilepsy Awareness Month, and let's hope that what we've learned and the awareness gained lasts all year long. :)
Today I can look at my daughter and know that she is the healthiest that she has ever been. I can sit next to her while she is reading her library book out loud and marvel at how much she has changed and grown in the last few years. I can look at our journey, and be thankful for the bumps because it makes the smoothness so much sweeter.
I don't know when she'll have another seizure. The very thought of another one hitting terrifies me, though. It is so difficult watching your child go through something that you can't protect her from. I can keep her safe from all kinds of evils, but I can't protect her from her own brain. It's a long, long road to acceptance of that fact, and while I may be afraid of what could happen at any time, I refuse to dwell on that. I refuse to feel sorry for myself or her. We have a good life. SHE has a good life. I love embracing that.
Here's to the last day of Epilepsy Awareness Month, and let's hope that what we've learned and the awareness gained lasts all year long. :)
Monday, November 29, 2010
Experiences with School Nurses
When my daughter started school within the district that I teach, I provided her school nurse with a short informational packet in regards to her condition. I thought I was being smart. It's what most parents would have done in a similar position. I provided typical symptoms of an oncoming seizure, description of the seizures themselves, medications, and other prudent information.
The school nurse at her first elementary school was intimidated by my daughter's diagnosis. There's no other way to describe her behavior in regards to my daughter after she found out about her seizures. Every time the wind changed, I'd get a phone call asking me to pick her up because she was "exhibiting odd behavior." One time, my daughter got angry at another kid, and her face turned red. The nurse called me all upset because my daughter had broken out in a rash, and she was "concerned about her being contagious." I had a friend pick her up, and I rushed home to get her. She was absolutely fine, and the school nurse knew it. It was just the beginning of trying to get her out of the school as much as possible because she was so scared of her diagnosis.
The straw that broke the camel's back was the nurse telling me that my daughter "didn't belong in public school." I'm not entirely sure what I said afterwards, but I can assure you that it wasn't kind.
My daughter is at a different school now, and the school has a new school nurse. We're experiencing a similar situation with this school nurse. In the last two weeks, she has called on two separate occasions, telling me that my daughter has had a bathroom accident, and she's running a low grade temp. Could I please pick her up? The first time I did pick her up, and I took her to the doctor. The doctor couldn't find anything wrong with her kidney function (she's had kidney issues in the past), but did discover that she has a minor bowel obstruction, and that is putting pressure on her bladder, which is causing all of her issues. It's an easy fix. The nurse still calls, and really wants me to pick her up from school.
Sadly, my experiences with my daughter's school nurse is not unusual. If you take a survey of parents with children diagnosed with seizure disorders, most of them would probably tell you that they are unimpressed with how their child's school handles their child and his diagnosis. In my daughter's case, she's not had a seizure at school in years, and yet, the nurse is so jittery about her diagnosis, she makes up reasons for her to be sent home. I've talked to parents that have dealt with schools threatening to sue the parents because they are uncomfortable with the child being on campus.
The thing is...there's this fedral law that mandates that every child is entitled to "a free and appropriate public education." (FAPE) Is sending my child home at every opportunity (contrived or otherwise) really meeting that criteria? No...it's not, and yet, I'll continue to battle this woman at least once or twice a month until the school year is over, and then probably throughout her time at that school. It will be exhausting, and we'll end up hating each other. I'm hard headed, and I'll always, always win. I know my daughter better than anyone, and to have someone that doesn't know her but has a medical background tell me what she thinks she needs is insulting.
Today was a pure venting post. I'm off to email a principal, and let her know my expectations of the school nurse. I imagine it's going to be a long school year from here on out.
The school nurse at her first elementary school was intimidated by my daughter's diagnosis. There's no other way to describe her behavior in regards to my daughter after she found out about her seizures. Every time the wind changed, I'd get a phone call asking me to pick her up because she was "exhibiting odd behavior." One time, my daughter got angry at another kid, and her face turned red. The nurse called me all upset because my daughter had broken out in a rash, and she was "concerned about her being contagious." I had a friend pick her up, and I rushed home to get her. She was absolutely fine, and the school nurse knew it. It was just the beginning of trying to get her out of the school as much as possible because she was so scared of her diagnosis.
The straw that broke the camel's back was the nurse telling me that my daughter "didn't belong in public school." I'm not entirely sure what I said afterwards, but I can assure you that it wasn't kind.
My daughter is at a different school now, and the school has a new school nurse. We're experiencing a similar situation with this school nurse. In the last two weeks, she has called on two separate occasions, telling me that my daughter has had a bathroom accident, and she's running a low grade temp. Could I please pick her up? The first time I did pick her up, and I took her to the doctor. The doctor couldn't find anything wrong with her kidney function (she's had kidney issues in the past), but did discover that she has a minor bowel obstruction, and that is putting pressure on her bladder, which is causing all of her issues. It's an easy fix. The nurse still calls, and really wants me to pick her up from school.
Sadly, my experiences with my daughter's school nurse is not unusual. If you take a survey of parents with children diagnosed with seizure disorders, most of them would probably tell you that they are unimpressed with how their child's school handles their child and his diagnosis. In my daughter's case, she's not had a seizure at school in years, and yet, the nurse is so jittery about her diagnosis, she makes up reasons for her to be sent home. I've talked to parents that have dealt with schools threatening to sue the parents because they are uncomfortable with the child being on campus.
The thing is...there's this fedral law that mandates that every child is entitled to "a free and appropriate public education." (FAPE) Is sending my child home at every opportunity (contrived or otherwise) really meeting that criteria? No...it's not, and yet, I'll continue to battle this woman at least once or twice a month until the school year is over, and then probably throughout her time at that school. It will be exhausting, and we'll end up hating each other. I'm hard headed, and I'll always, always win. I know my daughter better than anyone, and to have someone that doesn't know her but has a medical background tell me what she thinks she needs is insulting.
Today was a pure venting post. I'm off to email a principal, and let her know my expectations of the school nurse. I imagine it's going to be a long school year from here on out.
Monday, November 22, 2010
Article on Coping with Epilepsy
This is an article that was written about a woman in Sioux Falls, South Dakota. She talks about how her life has changed since she started to experience seizures.
Coping With Epilepsy
The next link takes you to a video from Fox News. David Axelrod is President Obama's senior adviser, and his daughter has dealt with epilepsy for most of her life. It is definitely worth watching.
David and Susan Axelrod Talk About Their Daughter
As a sidenote, Susan Axelrod is one of the co-founders of CURE (Citizens United for Research in Epilepsy). The link to the group's website is included in the list of important links on the side of this blog. I encourage you to visit this site. It is definitely worth your time and energy.
I've been sorely lacking in my postings lately. Preparing for the upcoming holidays mixed with the recent release of Harry Potter has taken up a good part of my extra time. I will do better. :)
Have a great Thanksgiving everyone.
Coping With Epilepsy
The next link takes you to a video from Fox News. David Axelrod is President Obama's senior adviser, and his daughter has dealt with epilepsy for most of her life. It is definitely worth watching.
David and Susan Axelrod Talk About Their Daughter
As a sidenote, Susan Axelrod is one of the co-founders of CURE (Citizens United for Research in Epilepsy). The link to the group's website is included in the list of important links on the side of this blog. I encourage you to visit this site. It is definitely worth your time and energy.
I've been sorely lacking in my postings lately. Preparing for the upcoming holidays mixed with the recent release of Harry Potter has taken up a good part of my extra time. I will do better. :)
Have a great Thanksgiving everyone.
Monday, November 15, 2010
Friday, November 12, 2010
An Experience I Had Today
I teach high school. Every year on the first day of school, I explain to my students about my daughter and her diagnosis of epilepsy. I show pictures. I explain what her life has been like, and situations that could cause me to be absent. Once the school year starts, I openly discuss seizures and epilepsy whenever the opportunity presents itself.
Today in one of my classes, I had a student that put his head down on his desk, and pretended to shake. I looked at him, and said, "Really..?" He said, "Oh, yeah...uh. Yeah. I know you don't think it's funny, but I really don't care about that. I'm not apologizing."
I'm having mixed reactions.
Part of me wants to leave my classroom and go cry. I'm so angry. I've requested that he be removed from my class immediately. I can't promise that I'll be nice to him ever again.
The rest of me sees that his reaction and general attitude is the biggest reason why we need epilepsy education. His behavior and general ignorance is the reason I am fighting this fight. I am going to change the world, and I have to start somewhere.
I'm going to wear a purple ribbon. I'm going to wear my epilepsy awareness shirt on Friday (Note to self: make/order one). I'm going to be so annoying with epilepsy awareness that people like that can't say a word without someone else jumping on him.
People like that can't win. I absolutely refuse to let them.
Today in one of my classes, I had a student that put his head down on his desk, and pretended to shake. I looked at him, and said, "Really..?" He said, "Oh, yeah...uh. Yeah. I know you don't think it's funny, but I really don't care about that. I'm not apologizing."
I'm having mixed reactions.
Part of me wants to leave my classroom and go cry. I'm so angry. I've requested that he be removed from my class immediately. I can't promise that I'll be nice to him ever again.
The rest of me sees that his reaction and general attitude is the biggest reason why we need epilepsy education. His behavior and general ignorance is the reason I am fighting this fight. I am going to change the world, and I have to start somewhere.
I'm going to wear a purple ribbon. I'm going to wear my epilepsy awareness shirt on Friday (Note to self: make/order one). I'm going to be so annoying with epilepsy awareness that people like that can't say a word without someone else jumping on him.
People like that can't win. I absolutely refuse to let them.
Tuesday, November 9, 2010
Epilepsy Really Stinks Campaign "Commercial"
This is my Epilepsy Really Stinks "commercial." I'm going to use it to show our student council joint meeting in order to hopefully gain the support of the four local high schools in doing a district-wide epilepsy awareness campaign.
I'm working on the music portion. It's still a work in progress. :)
Some thoughts...
Last night a young lady told me about how my daughter's story regarding her diagnosis with epilepsy made her think about a friend of hers. When she was a little girl, she and a friend were playing and the friend said, "Go get your mom. Now." Her friend then had a seizure. She described what it was like being young and holding this girl while she had a seizure, and how terrified she was. She told me about her mom trying to calm her down and call emergency services. She said that later that friend died because of her seizures, and that it was hard on her and her cousin losing this person.
Yesterday afternoon I was putting epilepsy awareness flyers up around the school, and I noticed a young lady standing there staring at me. I glanced at her, and she said, "My brother has epilepsy, and I've had a seizure before. Thank you for doing this." Then she walked off.
Those two young ladies are part of the reason why I am an advocate for epilepsy awareness.
I think sometimes I annoy people with my constant talking of epilepsy and building epilepsy awareness. I share my daughter's history with anyone that will listen to me because I believe it is important to share what's happened to her with others to build an understanding.
I will never stop sharing these things. I will always be working to build awareness for epilepsy so that people understand what it is and what it isn't. I won't be happy until more money is allocated from the federal government for research into cures for epilepsy. I want to see every star in Hollywood wearing a purple ribbon to the Oscars. I want every person that sees the word epilepsy to know exactly what that means, and know that it isn't anything to laugh at. I want those idiots that post "funny" videos on YouTube about seizures and flashing lights to know that they aren't funny, but they are hurtful and ignorant.
Three million people in the U.S. have epilepsy. One in nine people in the U.S. will have a seizure in their lifetime. Put yourself in the shoes of someone having a seizure. Would you want people to stop, stare, and laugh, or would you want them to help you and know exactly what to do to make sure that you're safe?
Join me in being an advocate for epilepsy awareness. When you think about it, how could you not?
Yesterday afternoon I was putting epilepsy awareness flyers up around the school, and I noticed a young lady standing there staring at me. I glanced at her, and she said, "My brother has epilepsy, and I've had a seizure before. Thank you for doing this." Then she walked off.
Those two young ladies are part of the reason why I am an advocate for epilepsy awareness.
I think sometimes I annoy people with my constant talking of epilepsy and building epilepsy awareness. I share my daughter's history with anyone that will listen to me because I believe it is important to share what's happened to her with others to build an understanding.
I will never stop sharing these things. I will always be working to build awareness for epilepsy so that people understand what it is and what it isn't. I won't be happy until more money is allocated from the federal government for research into cures for epilepsy. I want to see every star in Hollywood wearing a purple ribbon to the Oscars. I want every person that sees the word epilepsy to know exactly what that means, and know that it isn't anything to laugh at. I want those idiots that post "funny" videos on YouTube about seizures and flashing lights to know that they aren't funny, but they are hurtful and ignorant.
Three million people in the U.S. have epilepsy. One in nine people in the U.S. will have a seizure in their lifetime. Put yourself in the shoes of someone having a seizure. Would you want people to stop, stare, and laugh, or would you want them to help you and know exactly what to do to make sure that you're safe?
Join me in being an advocate for epilepsy awareness. When you think about it, how could you not?
Monday, November 8, 2010
Epilepsy Awareness Month-Part 5
MYTH #5: EPILEPSY IS RARE
Epilepsy is definitely not rare. Current estimates are that about three million people have epilepsy, and two hundred thousand people will be diagnosed with epilepsy this year alone. Epilepsy is the most common neurological condition.
I'm very open wth my daughter's diagnosis of epilepsy. It's probably to the point of obnoxiousness, but I have a hard time caring about that. Nearly every time I say, "My daughter has epilepsy," someone says, "Oh! I know someone with epilepsy!!" If it was such a rare condition, would most people be able to say that?
Epilepsy is definitely not rare. Current estimates are that about three million people have epilepsy, and two hundred thousand people will be diagnosed with epilepsy this year alone. Epilepsy is the most common neurological condition.
I'm very open wth my daughter's diagnosis of epilepsy. It's probably to the point of obnoxiousness, but I have a hard time caring about that. Nearly every time I say, "My daughter has epilepsy," someone says, "Oh! I know someone with epilepsy!!" If it was such a rare condition, would most people be able to say that?
Sunday, November 7, 2010
Friday, November 5, 2010
Epilepsy Awareness Month-Part 4
MYTH #4: PEOPLE WITH EPILEPSY LOOK DIFFERENT.
Every time I have ever shared our experience with epilepsy, someone has said, "Wow!! I can't believe your daughter has been through all that!! She doesn't look different!!"
Well, that's because she isn't different. She's a child with a medical condition. People with epilepsy don't look different. There's not an outward marker of it. They don't wear giant E's on their jackets to signify their medical conditions. You wouldn't expect a person with diabetes or a heart condition to look different. Why would someone with epilepsy look different than someone without?
To a certain degree I can understand what they are thinking. In my daughter's case, she has been through so much trauma that you would think that there would be an outwardly physical manifestation of it. Sometimes I'm guilty of that, too. I look at her and think, "She looks so normal. No one would ever believe what she's been through just by looking at her."
Most people with epilepsy are highly functioning individuals. They have jobs. They go to school. They have family and friends. They have hobbies and activities that they enjoy. Their lives are not consumed by their seizures. It's a small part of their lives. They have one, they handle it, and they move on. When my daughter is in good health, we aren't dictated by her seizures. We take small precautions, but don't limit our activities. She plays baseball. She goes to school. She's active in her after school program. She lives the life of a "normal" child because 90% of the time she is a normal child.
One last thing before I post for the day: Don't pity people with epilepsy. They don't need it. They need understanding and support, but not pity. If you feel yourself leaning towards pity, reach out and try to understand what epilepsy is, and how to help. Pity doesn't help anyone. Ever.
Every time I have ever shared our experience with epilepsy, someone has said, "Wow!! I can't believe your daughter has been through all that!! She doesn't look different!!"
Well, that's because she isn't different. She's a child with a medical condition. People with epilepsy don't look different. There's not an outward marker of it. They don't wear giant E's on their jackets to signify their medical conditions. You wouldn't expect a person with diabetes or a heart condition to look different. Why would someone with epilepsy look different than someone without?
To a certain degree I can understand what they are thinking. In my daughter's case, she has been through so much trauma that you would think that there would be an outwardly physical manifestation of it. Sometimes I'm guilty of that, too. I look at her and think, "She looks so normal. No one would ever believe what she's been through just by looking at her."
Most people with epilepsy are highly functioning individuals. They have jobs. They go to school. They have family and friends. They have hobbies and activities that they enjoy. Their lives are not consumed by their seizures. It's a small part of their lives. They have one, they handle it, and they move on. When my daughter is in good health, we aren't dictated by her seizures. We take small precautions, but don't limit our activities. She plays baseball. She goes to school. She's active in her after school program. She lives the life of a "normal" child because 90% of the time she is a normal child.
One last thing before I post for the day: Don't pity people with epilepsy. They don't need it. They need understanding and support, but not pity. If you feel yourself leaning towards pity, reach out and try to understand what epilepsy is, and how to help. Pity doesn't help anyone. Ever.
Wednesday, November 3, 2010
Epilepsy Awareness Month-Part 3
MYTH #3-THERE IS ALWAYS A MEDICAL CAUSE FOR EPILEPSY AND SEIZURES
Typical medical causes of epilepsy include:
My daughter's epilepsy has no cause, and with the exception of the drug Trileptal, she has responded well to drug treatments. At first I was frustrated that no one could tell me why this was happening to her, but after realizing that any causes would be worse than the seizures, I accepted that most of the time her brain functioned normally. When it didn't, there won't be a reason to explain away the why's.
My acceptance was helped along by gaining an understanding of what was happening to her brain and body when she began to experience a seizure. Information quickly becomes your biggest ally and your biggest weapon when you're fighting the battle against epilepsy.
Typical medical causes of epilepsy include:
- Imbalance of chemicals within the brain that transmit electrical impulses
- Hereditary causes
- Other medical disorders that cause seizures (brain tumors, lesions, encephalitis)
- Head injury
- Prenatal injury
- Drug/alcohol abuse
- Exposure to lead, carbon monoxide, toxic chemicals
My daughter's epilepsy has no cause, and with the exception of the drug Trileptal, she has responded well to drug treatments. At first I was frustrated that no one could tell me why this was happening to her, but after realizing that any causes would be worse than the seizures, I accepted that most of the time her brain functioned normally. When it didn't, there won't be a reason to explain away the why's.
My acceptance was helped along by gaining an understanding of what was happening to her brain and body when she began to experience a seizure. Information quickly becomes your biggest ally and your biggest weapon when you're fighting the battle against epilepsy.
Tuesday, November 2, 2010
Epilepsy Awareness Month-Part 2
Sorry for the late posting. I'm helping the student council at my high school plan a large Epilepsy Awareness Campaign based off of my blog. It's going to be called "The Epilepsy Really Stinks Campaign." I'm excited to get it started. We'll be making epilepsy awareness posters to post around the school. I'd like to appear on our school announcements with information about epilepsy. And...the thing I'm super excited about...we're selling epilepsy awareness bracelets. Think the Livestrong Bracelets, only purple. They'll say...wait for it...Epilepsy Really Stinks. :)
MYTH #2: EPILEPSY IS NOT DANGEROUS.
There are so many reasons why this one is a myth, and most of them are for obvious reasons. However, do you know how many parents and individuals are told that a diagnosis of epilepsy is no big deal, the patient will go on medication, and their lives will be just like they were before the first seizure? For the majority of people this is simply not true. In a perfect world, the first medication tried would work, and there wouldn't be any horrible side effects. There wouldn't be any brain damage, and life would continue like it was before.
I was told that it was nothing to worry about. In fact, the first time my daughter was put on medication, she was put on half a milliliter twice a day. That's not even enough for your body to digest and metabolize. The doctor simply believed that it wasn't anything to be concerned about, and he sent us on our merry way. Less than six months later, my daughter had a thirty-seven minute seizure, and it became painfully obvious that epilepsy was definitely something to worry about.
There are the obvious things that make seizures dangerous. You have the lack of oxygen moving through the body. You have the accelerated heart rate. You have the convulsing that could cause your body to hit something and harm it. Imagine that your body isn't getting adequate oxygen for over half an hour. Imagine that your heart rate is accelerated to over 250 beats a minute. Doctors are telling me this isn't dangerous. Yeah, right.
Then there's SUDEP (Sudden Unexpected Death in EPilepsy). It's exactly what it sounds like, and it's the parent of a child with epilepsy's worst nightmare. A person can not have seizures for years, and then suddenly die because of their seizures. Five hundred people a year die because of SUDEP. It's a big enough issue that there's an entire support group through the Epilepsy Foundation for loved one's of those lost. It could happen to anyone with epilepsy at any given time.
There's the brain damage associated with prolonged seizures. Three years ago, my daughter was diagnosed with unchanging, non-degenerative brain damage. It's called Static Encephalopathy. It won't get worse unless she has another set of massive seizures, but it's not going to get better either.
The medicines aren't much better. For example, Depakote is an often used medication to control tonic clonic seizures. It is very effective. It can cause your liver to fail, and suppress your platelet count without you even realizing it. Another example, Zonegran is a support medication that is used to control all different kinds of seizures. It causes the person to no longer perspire, dizziness, and in some cases kidney stones. Dilantin causes your gums to swell and in some cases bleed.
Common Side Effects of MOST Medications:
I believe this is why so many people with new diagnoses are blindsided by the full meaning of epilepsy. It clearly is a big deal. Life won't be the same as it was before. Soon you'll be taking emergency meds with you where ever you go. You'll have a stop watch in your purse with your child's seizure long and emergency information. You'll have their care notebook in the trunk of your car. You'll know what your child's face looks like right before one hits, and what each breath means during a seizure. You'll be able to reassure a salesperson at a store that is in a panic because your child is having a seizure..."No, it will be fine. I don't need an ambulance. Could you keep people clear of the area? No, we're okay. Thank you, though. I promise it will be okay. She does this all the time. Thank you. Please don't cry...." You'll be on a first name basis with your child's neurologist, and send him Christmas cards because he's part of your family. You'll have the neurologist's phone number memorized before even your husband's phone number....
You'll have a new definition of "normal." You'll hate it, but you will come to terms with it.
MYTH #2: EPILEPSY IS NOT DANGEROUS.
There are so many reasons why this one is a myth, and most of them are for obvious reasons. However, do you know how many parents and individuals are told that a diagnosis of epilepsy is no big deal, the patient will go on medication, and their lives will be just like they were before the first seizure? For the majority of people this is simply not true. In a perfect world, the first medication tried would work, and there wouldn't be any horrible side effects. There wouldn't be any brain damage, and life would continue like it was before.
I was told that it was nothing to worry about. In fact, the first time my daughter was put on medication, she was put on half a milliliter twice a day. That's not even enough for your body to digest and metabolize. The doctor simply believed that it wasn't anything to be concerned about, and he sent us on our merry way. Less than six months later, my daughter had a thirty-seven minute seizure, and it became painfully obvious that epilepsy was definitely something to worry about.
There are the obvious things that make seizures dangerous. You have the lack of oxygen moving through the body. You have the accelerated heart rate. You have the convulsing that could cause your body to hit something and harm it. Imagine that your body isn't getting adequate oxygen for over half an hour. Imagine that your heart rate is accelerated to over 250 beats a minute. Doctors are telling me this isn't dangerous. Yeah, right.
Then there's SUDEP (Sudden Unexpected Death in EPilepsy). It's exactly what it sounds like, and it's the parent of a child with epilepsy's worst nightmare. A person can not have seizures for years, and then suddenly die because of their seizures. Five hundred people a year die because of SUDEP. It's a big enough issue that there's an entire support group through the Epilepsy Foundation for loved one's of those lost. It could happen to anyone with epilepsy at any given time.
There's the brain damage associated with prolonged seizures. Three years ago, my daughter was diagnosed with unchanging, non-degenerative brain damage. It's called Static Encephalopathy. It won't get worse unless she has another set of massive seizures, but it's not going to get better either.
The medicines aren't much better. For example, Depakote is an often used medication to control tonic clonic seizures. It is very effective. It can cause your liver to fail, and suppress your platelet count without you even realizing it. Another example, Zonegran is a support medication that is used to control all different kinds of seizures. It causes the person to no longer perspire, dizziness, and in some cases kidney stones. Dilantin causes your gums to swell and in some cases bleed.
Common Side Effects of MOST Medications:
- Prolonged Fever
- Rash
- Severe Sore Throat
- Mouth Ulcers
- Easy Bruising
- Pinpoint Bleeding
- Weakness
- Excessive Fatigue
- Swollen Glands
- Lack of Appetite
- Increased Seizures
I believe this is why so many people with new diagnoses are blindsided by the full meaning of epilepsy. It clearly is a big deal. Life won't be the same as it was before. Soon you'll be taking emergency meds with you where ever you go. You'll have a stop watch in your purse with your child's seizure long and emergency information. You'll have their care notebook in the trunk of your car. You'll know what your child's face looks like right before one hits, and what each breath means during a seizure. You'll be able to reassure a salesperson at a store that is in a panic because your child is having a seizure..."No, it will be fine. I don't need an ambulance. Could you keep people clear of the area? No, we're okay. Thank you, though. I promise it will be okay. She does this all the time. Thank you. Please don't cry...." You'll be on a first name basis with your child's neurologist, and send him Christmas cards because he's part of your family. You'll have the neurologist's phone number memorized before even your husband's phone number....
You'll have a new definition of "normal." You'll hate it, but you will come to terms with it.
Delayed Post
Good morning!!
I've got a very full day ahead of me, so my blog update will arrive later this afternoon.
Thanks for understanding!!
I've got a very full day ahead of me, so my blog update will arrive later this afternoon.
Thanks for understanding!!
Monday, November 1, 2010
Re-Posting Seizure First Aid
Seizure first aid is so incredibly important that I'm re-posting the seizure first aid post.
When providing seizure first aid for generalized tonic clonic (grand mal) seizures, these are the key things to remember:
When providing seizure first aid for generalized tonic clonic (grand mal) seizures, these are the key things to remember:
- Keep calm and reassure other people who may be nearby.
- Don't hold the person down or try to stop his movements.
- Time the seizure with your watch.
- Clear the area around the person of anything hard or sharp.
- Loosen ties or anything around the neck that may make breathing difficult.
- Put something flat and soft, like a folded jacket, under the head.
- Turn him or her gently onto one side. This will help keep the airway clear.
- Do not try to force the mouth open with any hard implement or with fingers. A person having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
- Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
- Stay with the person until the seizure ends naturally.
- Be friendly and reassuring as consciousness returns.
- Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.
Epilepsy Awareness Month- Part 1
Good morning!! I hope everyone had a nice weekend. I usually try to take my weekends off from blogging, and spend some quality time with my family. Our lives are so busy during the week that by Saturday, we desperately need that time to touch base with each other.
This morning I was trying decide what to blog about today in regards to Epilepsy Awareness Month. There's so much that I want to accomplish with my blog, and sometimes I get overwhelmed with the topics that I could discuss. I finally decided that each day of the month that I post a blog, I will address one myth associated with epilepsy. Hopefully by doing this, I can set a few people straight.
This first myth is one that is a personal pet peeve of mine. I figure it's best to just get it out of the way now.
MYTH #1: A PERSON THAT IS HAVING A SEIZURE CAN SWALLOW THEIR TONGUE, SO YOU NEED TO PUT SOMETHING IN HIS/HER MOUTH TO KEEP THAT FROM HAPPENING.
This one is not true on any level!!!!!! Do me a favor, but first look around and make sure no one is watching you. Don't worry. I'm not going to ask you to do anything inappropriate. I'm just trying to spare you some awkward looks and embarrassment.
You good? Okay.
Open your mouth and stick out your tongue. Now, life up your tongue, and feel underneath it. Feel that sliver of tissue that attaches your tongue to the bottom of your mouth? Yeah. That's little sliver of tissue keeps your tongue in your mouth. If it wasn't there, your tongue would definitely slide right down the back of your throat. That sliver of tissue doesn't just suddenly go away when you're having a seizure. It's pretty much a permanent fixture in your body. IT IS PHYSICALLY IMPOSSIBLE TO SWALLOW YOUR TONGUE DURING A SEIZURE, OR AT ANY OTHER MOMENT IN TIME.
Sticking something in a seizing person could hurt them badly. You could break their teeth, break their jaw, cut their tongue, or cut their mouth. It is best to just leave the mouth alone. You may start to see blood coming from their mouth, and this is most likely due to the person biting their tongue during the seizure. It is best to wait until the person is finished seizing, and clean up their face afterwards.
As always, if a person has a seizure, place them gently on the ground, and clear any objects away from them. Place the person on his/her side, and see if you can find something to cushion their head (pillow, sweater, blanket, etc.). Stay close to the person, but do not restrain him/her. This could hurt you both. Time the seizure, and talk to the person as they are seizing. Tell them your name, and that you are there to help him/her. I talk to my daughter the entire time she's seizing, and afterwards. My biggest fear is that she can hear what's going on, and she's afraid because she thinks that she's alone. Call an ambulance after the person is situated and safe.
After the seizure when the person wakes up, the person is going to be confused. Hopefully medical personnel have arrived by that point, but if they haven't, keep the person laying down until they do. Once they get there, they'll take over.
See you guys tomorrow!!
This morning I was trying decide what to blog about today in regards to Epilepsy Awareness Month. There's so much that I want to accomplish with my blog, and sometimes I get overwhelmed with the topics that I could discuss. I finally decided that each day of the month that I post a blog, I will address one myth associated with epilepsy. Hopefully by doing this, I can set a few people straight.
This first myth is one that is a personal pet peeve of mine. I figure it's best to just get it out of the way now.
MYTH #1: A PERSON THAT IS HAVING A SEIZURE CAN SWALLOW THEIR TONGUE, SO YOU NEED TO PUT SOMETHING IN HIS/HER MOUTH TO KEEP THAT FROM HAPPENING.
This one is not true on any level!!!!!! Do me a favor, but first look around and make sure no one is watching you. Don't worry. I'm not going to ask you to do anything inappropriate. I'm just trying to spare you some awkward looks and embarrassment.
You good? Okay.
Open your mouth and stick out your tongue. Now, life up your tongue, and feel underneath it. Feel that sliver of tissue that attaches your tongue to the bottom of your mouth? Yeah. That's little sliver of tissue keeps your tongue in your mouth. If it wasn't there, your tongue would definitely slide right down the back of your throat. That sliver of tissue doesn't just suddenly go away when you're having a seizure. It's pretty much a permanent fixture in your body. IT IS PHYSICALLY IMPOSSIBLE TO SWALLOW YOUR TONGUE DURING A SEIZURE, OR AT ANY OTHER MOMENT IN TIME.
Sticking something in a seizing person could hurt them badly. You could break their teeth, break their jaw, cut their tongue, or cut their mouth. It is best to just leave the mouth alone. You may start to see blood coming from their mouth, and this is most likely due to the person biting their tongue during the seizure. It is best to wait until the person is finished seizing, and clean up their face afterwards.
As always, if a person has a seizure, place them gently on the ground, and clear any objects away from them. Place the person on his/her side, and see if you can find something to cushion their head (pillow, sweater, blanket, etc.). Stay close to the person, but do not restrain him/her. This could hurt you both. Time the seizure, and talk to the person as they are seizing. Tell them your name, and that you are there to help him/her. I talk to my daughter the entire time she's seizing, and afterwards. My biggest fear is that she can hear what's going on, and she's afraid because she thinks that she's alone. Call an ambulance after the person is situated and safe.
After the seizure when the person wakes up, the person is going to be confused. Hopefully medical personnel have arrived by that point, but if they haven't, keep the person laying down until they do. Once they get there, they'll take over.
See you guys tomorrow!!
Friday, October 29, 2010
November is Epilepsy Awareness Month
Hello, Everyone!! I pondered all day yesterday about what to write and post here. I knew I wanted to post about Epilepsy Awareness Month, but I wanted to make sure I got it right. Plus, I wanted to share exciting news about what my Student Council is putting together for the month of November.
November is Epilepsy Awareness Month. The whole purpose is getting the word out about epilepsy, what it is, and what it isn't. It's about raising awareness, and ending stigma. It's about educating people so they understand what is happening to a person as his/her brain is having a seizure. It's about helping the public to understand a neurological condition that is often the most misunderstood medical condition in the world. Once upon a time, well-educated people believed that a person suffering from seizures and epilepsy was possessed by the devil. It wasn't that long ago that these people were forced to go through exorcisms to drive the "demons" out. It's only been in the last century or so that people have come to realize that epilepsy is a very real and very serious medical condition. It's only been the last fifty or sixty years that treatments have been developed to help a person suffering from uncontrolled seizures. Even with these treatments, seizures can often go uncontrolled because not every medicine works for every person having seizures.
My daughter has been on eight different medications. Sometimes they've been combined, sometimes they've been alone, and most of them have failed to control her seizures. Even now, she's on three medications to control her seizures, and she's having breakthrough seizures every few months. Because she's experiencing about 90% seizure control, we're not going to change anything. Doing so could mean going back to having dozens of seizures a week, and that very possibility terrifies me.
I think the most effective way to make people understand what epilepsy is, is to explain what it means to me. My daughter was perfectly healthy for the first sixteen months of her life. Then the seizures came, and over time, they took so much away from my baby. Eight months after her first seizure, she had a seizure event that lasted thirty-seven minutes. It began at dinner at Fazoli's in Abilene, Texas. She slumped forward, and wouldn't respond to me or my sister. We picked her up and ran out of the Fazoli's and drove like maniacs to Abilene Regional Medical Center. We busted into the ER, and as soon as I put her on the gurney, she began to convulse. She continued to do that for another half an hour. She bit her tongue, and blood poured out of her mouth. She turned blue. It took major medical intervention to stop the seizure, and she basically went into a medically induced coma. A helicopter was summoned from Cook Children's Medical Center in Ft. Worth, Texas, and she was flown to that hospital. A day later, she woke up, and though she was wobbly, she was okay.
That event started the worst few months of our lives. She began having dozens of seizures a week, each worse than the one before. She began losing skills like holding a cup, walking, and sometimes speech. In September of that same year, she had five seizures in twenty-four hours, and that prompted a whole new round of treatment that controlled her seizures, but it would ultimately cause her liver to begin to fail and put her in the hospital for a week in February of 2008. Eventually she was diagnosed with irreversible brain damage, and developmentally delayed. That was almost three years ago.
Epilepsy is my enemy. This blog, building awareness, becoming a vocal advocate...all of it...it's my war against epilepsy. It has taken so much from my daughter, and though I can't protect her from the seizures, I can do this. I can't fight the AGAINST disease, but I can fight FOR my daughter.
In this vein, my student council at the high school where I am teaching is doing an Epilepsy Awareness Project based off of this blog. It's called "The Epilepsy Really Stinks Campaign." More details are forthcoming because I want to firm some details up before I super publicize it, but I was just so excited after our meeting to start planning this that I had to share with someone.
November is Epilepsy Awareness Month. The whole purpose is getting the word out about epilepsy, what it is, and what it isn't. It's about raising awareness, and ending stigma. It's about educating people so they understand what is happening to a person as his/her brain is having a seizure. It's about helping the public to understand a neurological condition that is often the most misunderstood medical condition in the world. Once upon a time, well-educated people believed that a person suffering from seizures and epilepsy was possessed by the devil. It wasn't that long ago that these people were forced to go through exorcisms to drive the "demons" out. It's only been in the last century or so that people have come to realize that epilepsy is a very real and very serious medical condition. It's only been the last fifty or sixty years that treatments have been developed to help a person suffering from uncontrolled seizures. Even with these treatments, seizures can often go uncontrolled because not every medicine works for every person having seizures.
My daughter has been on eight different medications. Sometimes they've been combined, sometimes they've been alone, and most of them have failed to control her seizures. Even now, she's on three medications to control her seizures, and she's having breakthrough seizures every few months. Because she's experiencing about 90% seizure control, we're not going to change anything. Doing so could mean going back to having dozens of seizures a week, and that very possibility terrifies me.
I think the most effective way to make people understand what epilepsy is, is to explain what it means to me. My daughter was perfectly healthy for the first sixteen months of her life. Then the seizures came, and over time, they took so much away from my baby. Eight months after her first seizure, she had a seizure event that lasted thirty-seven minutes. It began at dinner at Fazoli's in Abilene, Texas. She slumped forward, and wouldn't respond to me or my sister. We picked her up and ran out of the Fazoli's and drove like maniacs to Abilene Regional Medical Center. We busted into the ER, and as soon as I put her on the gurney, she began to convulse. She continued to do that for another half an hour. She bit her tongue, and blood poured out of her mouth. She turned blue. It took major medical intervention to stop the seizure, and she basically went into a medically induced coma. A helicopter was summoned from Cook Children's Medical Center in Ft. Worth, Texas, and she was flown to that hospital. A day later, she woke up, and though she was wobbly, she was okay.
That event started the worst few months of our lives. She began having dozens of seizures a week, each worse than the one before. She began losing skills like holding a cup, walking, and sometimes speech. In September of that same year, she had five seizures in twenty-four hours, and that prompted a whole new round of treatment that controlled her seizures, but it would ultimately cause her liver to begin to fail and put her in the hospital for a week in February of 2008. Eventually she was diagnosed with irreversible brain damage, and developmentally delayed. That was almost three years ago.
Epilepsy is my enemy. This blog, building awareness, becoming a vocal advocate...all of it...it's my war against epilepsy. It has taken so much from my daughter, and though I can't protect her from the seizures, I can do this. I can't fight the AGAINST disease, but I can fight FOR my daughter.
In this vein, my student council at the high school where I am teaching is doing an Epilepsy Awareness Project based off of this blog. It's called "The Epilepsy Really Stinks Campaign." More details are forthcoming because I want to firm some details up before I super publicize it, but I was just so excited after our meeting to start planning this that I had to share with someone.
Wednesday, October 27, 2010
New Diagnosis...How Do You Deal?
200,000 people will be diagnosed with epilepsy during 2010. Isn't that astounding? 200,000 people that either have been experiencing seizures for a long time and they've just come to this diagnosis, or people that will experience a seizure for the first time.
The first time my daughter experienced a seizure, she was 16 months old. She had a little cold, and I had just taken her temperature and given her tylenol. We were sitting in the rocking chair in her bedroom playing a game where she would lean back and when she came back up, I would tickle her belly and she'd giggle. She'd done this several times, and we were having a fun little time. Then she leaned back, and didn't come back. I said her name. Nothing. I looked at her eyes. They were rolled up in her head. For some reason, I knew immediately what was going on, though I'd never had experience with someone that had epilepsy. I picked her up and ran down the hallway to our living room, and placed her on the floor on her side. I called 911, and then experienced seven of the most terrifying minutes of my life. That was over six years ago.
At first I was told that the seizure she experienced was because of her fever, but I knew that there was something else going on with her. It took two months and about ten seizures before a doctor would say it was epilepsy. Then it took nearly six months before we had a decent neurologist that could treat her condition.
Dealing with my daughter's diagnosis is one of the hardest things that I've been through. Most people don't understand why a diagnosis of epilepsy is so devastating, and admittedly, I didn't fully grasp what we were entering in to until my daughter had been hospitalized the second time. I got it then, and I realized that things were going to get bad before they got better, and every facet of our lives was going to be affected. You really do go through the Five Stages of Grief (Info Here). I spent a good many years denying that our lives were being affected or that my daughter had lost some of her ability to function as a normal toddler. When I wasn't in denial, I was angry. I would cry tears of rage at the drop of the hat. I wanted to fight someone or something, but how do you fight a seizure? How do you beat it up? I didn't spend a lot of time bargaining, hoping that if I just did this then she would get better. I knew then that it wouldn't work. I did become very depressed, and it took over a year for me to work through it. I ended up going to a doctor, and going on antidepressants because of it. Then I finally accepted what is going on, but that didn't happen until I made the decision to become active in epilepsy advocacy and get word out.
Suggestions for dealing with a new diagnosis:
The first time my daughter experienced a seizure, she was 16 months old. She had a little cold, and I had just taken her temperature and given her tylenol. We were sitting in the rocking chair in her bedroom playing a game where she would lean back and when she came back up, I would tickle her belly and she'd giggle. She'd done this several times, and we were having a fun little time. Then she leaned back, and didn't come back. I said her name. Nothing. I looked at her eyes. They were rolled up in her head. For some reason, I knew immediately what was going on, though I'd never had experience with someone that had epilepsy. I picked her up and ran down the hallway to our living room, and placed her on the floor on her side. I called 911, and then experienced seven of the most terrifying minutes of my life. That was over six years ago.
At first I was told that the seizure she experienced was because of her fever, but I knew that there was something else going on with her. It took two months and about ten seizures before a doctor would say it was epilepsy. Then it took nearly six months before we had a decent neurologist that could treat her condition.
Dealing with my daughter's diagnosis is one of the hardest things that I've been through. Most people don't understand why a diagnosis of epilepsy is so devastating, and admittedly, I didn't fully grasp what we were entering in to until my daughter had been hospitalized the second time. I got it then, and I realized that things were going to get bad before they got better, and every facet of our lives was going to be affected. You really do go through the Five Stages of Grief (Info Here). I spent a good many years denying that our lives were being affected or that my daughter had lost some of her ability to function as a normal toddler. When I wasn't in denial, I was angry. I would cry tears of rage at the drop of the hat. I wanted to fight someone or something, but how do you fight a seizure? How do you beat it up? I didn't spend a lot of time bargaining, hoping that if I just did this then she would get better. I knew then that it wouldn't work. I did become very depressed, and it took over a year for me to work through it. I ended up going to a doctor, and going on antidepressants because of it. Then I finally accepted what is going on, but that didn't happen until I made the decision to become active in epilepsy advocacy and get word out.
Suggestions for dealing with a new diagnosis:
- Information is your friend and your weapon. When my daughter was first diagnosed, I felt like I had been thrown in an ocean and expected to know how to swim. I had no idea what her official diagnosis of "Complex Partials with Secondary Generalization" meant. I had no one to ask about it either. Because of this, I hopped online, and went to the Epilepsy Foundations's website, and read as much as I could. I also read the book Seizures and Epilepsy in Childhood: A Guide (Johns Hopkins Press Health Book). That book made me feel like I'd finally been given the rules to a game I didn't know I had been playing. Gain as much information as you can. It will not only help you understand what is happening during a seizure, but it will also help you see future symptoms and know when they are something worth mentioning.
- Begin keeping a seizure log. Time the seizures, and write down what's happening before, during, and after. It helps with doctors' appointments, and it also helps make any triggers or patterns obvious. Plus, it gives you a certain amount of control over the situation, and in my opinion, the worst part of epilepsy is the lack of control over what is happening to you or your child's body.
- Know about treatments and their side effects. Know the drug names and what they can do to the body. Side effects can range from dizziness to swollen gums to liver failure to low blood count. Keeping a check on the side effects is important because they can be more dangerous than the seizures.
- Keep and open dialogue with your doctor, and ask lots of questions. This one is still in the vein of gaining information. Pretty soon you're going to realize that your biggest ally in this should be your doctor. I think of my daughter's neurologist as the unofficial fourth member of our family. He always returns my calls, and he always has time for my questions. The icing on the cake is the fact that when I share my thoughts on what is going on, and make suggestions for how to proceed, he listens and often times, he agrees with me.
- Find others in your shoes, and talk to them. The Epilepsy Foundation has a wonderful forum that allows people to talk to others like them. The Parents Helping Parents Forum is especially helpful, and wonderfully supportive.
- Find your own personal support network. Whether it be friends or family, every person that's dealing with a new diagnosis needs someone to talk and vent to. I'm lucky in that I've got a wonderful group of friends, and an amazing family that has been there with me every step of the way. However, I've known parents that their families have told them that epilepsy isn't a real diagnosis, and they're over medicating their children because they don't want to deal with them.
Tuesday, October 26, 2010
What is so funny?
Anyone that knows me (and most of my readers at this point are people that know me) is aware of how much I hate it when people laugh at epilepsy and those who have it. Nothing grinds my gizzard as much as a group of people that should know better laughing it up about someone who looks like they're having a seizure. Actually...the videos that are supposed to induce a seizure with flashing lights really tick me off, too. I like to believe that people find humor in this because they simply don't know what is happening to the human body as a person is having a seizure. That's part of the reason I started this blog. I want to educate and help people so that maybe I can change people's perceptions of things they don't understand.
When I'm explaining seizures to someone that's never seen one before, I ask them what happens to their satellite reception on their TV when there is a bad thunderstorm. Most of the time, they tell me that it freezes up, but after the storm passes, their reception comes back, even though it might still freeze up for a little while until the connection fully resets. I then liken that to a seizure. A seizure is when electrical impulses in the brain start being over active to the point that it causes your body to convulse, or you to stare, or lose muscle control and hit the floor, etc. It can last for a few seconds or hours, but once the electrical impulses calm down, then the brain resets, and you start to recover. The recovery period is known as the post-ictal period, and can take minutes or hours complete. Essentially, your brain is recovering from the massive overload of activity that it has just experienced. Most of the time, the person sleeps during the post-ictal period, but my daughter often exhibits dark circles under her eyes, pale skin, and she's very lethargic.
Have you seen what happens to a child (or anyone, for that matter) when they have a seizure? Do you know what it looks like to see someone tiny having their body wracked by spasms and convulsions?
When I'm explaining seizures to someone that's never seen one before, I ask them what happens to their satellite reception on their TV when there is a bad thunderstorm. Most of the time, they tell me that it freezes up, but after the storm passes, their reception comes back, even though it might still freeze up for a little while until the connection fully resets. I then liken that to a seizure. A seizure is when electrical impulses in the brain start being over active to the point that it causes your body to convulse, or you to stare, or lose muscle control and hit the floor, etc. It can last for a few seconds or hours, but once the electrical impulses calm down, then the brain resets, and you start to recover. The recovery period is known as the post-ictal period, and can take minutes or hours complete. Essentially, your brain is recovering from the massive overload of activity that it has just experienced. Most of the time, the person sleeps during the post-ictal period, but my daughter often exhibits dark circles under her eyes, pale skin, and she's very lethargic.
Have you seen what happens to a child (or anyone, for that matter) when they have a seizure? Do you know what it looks like to see someone tiny having their body wracked by spasms and convulsions?
This a video of a little girl named Bella. Her parents posted this video on YouTube to educate people about epilepsy. Can you tell me what is funny about this little girl having a seizure? Is there anything remotely humorous about this toddler's brain openly declaring war on her body?
When the video opens, Bella is having a Tonic Clonic seizure. Notice that her parents have her on the floor, with anything that she could harm herself on cleared away. She is laying on her side, and her mother is sitting next to her, but not restraining her or putting something in her mouth. Everyone is remaining calm.
When the seizure stops, you hear Bella take a big deep breath and she stops convulsing. Her mother comments about how fast her heart is beating, and you can hear Bella continue to take deep breaths, almost as if she is panting. Most literature regarding the muscle spasms that are experienced during a seizure liken it to running a full marathon in just a few minutes. As Bella continues to breathe deeply, you hear her father (who is filming) ask the mother about the temperature change being a possible trigger. ANYTHING could be a trigger for a seizure. The key is figuring out what yours or your child's are.
You see Bella open her eyes, but there is zero recognition of anyone or of the situation. She is still in her post-ictal period, recovering from the seizure that she's just experienced. You hear her mother comment on the fact that it is a Tonic Clonic seizure (previously known as a Grand Mal), and that she will be sleeping for awhile. All this time, Bella is still breathing heavily, which is completely normal after experiencing a Tonic Clonic seizure. She hasn't had regular breathing for the length of the seizure, and her body is recovering from that.
The mom comments on the length of the seizure as being around 2 minutes. It is so important to time a seizure. You can make a log of it, and let the doctor know about the length. Her mother then comments about the difference between a Tonic Clonic and Complex Partial, which is just different types of seizures (my daughter experiences both as well).
Was there anything funny about that video?
Monday, October 25, 2010
Section 504
Good heavens I'm tired today. Normally I'd have something posted by 9:30, but I just couldn't get my brain to function at any sort of blog-writing level.
Today I want to address Section 504 of the Rehabilitation Act. In my opinion, it is the best kept secret of the public school system. So often, children suffer from medical issues that impact their ability to learn, but they don't qualify for special education because they're not learning disabled. Parents become frustrated because even though their child has a medical issue that affects their education, they can't get services for their child at school. This is where the 504 comes in to play.
What is the 504?
I've had students (remember I'm a high school teacher) that have literally missed over thirty days of school in a nine-week period due to medical issues, and they've received credit for their classes because they have 504 modifications and doctors' notes for their absences. This is fantastic for kids that have asthma or other easily aggravated conditions that can make going to school difficult or even unsafe. Also, under 504 modifications, in most cases you can receive home bound services via your school district. The school district has to pay a certified teacher to come to your home a couple of times a week, bring work to your child, and also tutor that child if it is necessary.
How are 504 modifications different from Individual Education Plan?
Exact wording of the Rehabilitation Act, Section 504
Special Education Law by State
Today I want to address Section 504 of the Rehabilitation Act. In my opinion, it is the best kept secret of the public school system. So often, children suffer from medical issues that impact their ability to learn, but they don't qualify for special education because they're not learning disabled. Parents become frustrated because even though their child has a medical issue that affects their education, they can't get services for their child at school. This is where the 504 comes in to play.
What is the 504?
- The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or post secondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes. (Where I got this information.)
I've had students (remember I'm a high school teacher) that have literally missed over thirty days of school in a nine-week period due to medical issues, and they've received credit for their classes because they have 504 modifications and doctors' notes for their absences. This is fantastic for kids that have asthma or other easily aggravated conditions that can make going to school difficult or even unsafe. Also, under 504 modifications, in most cases you can receive home bound services via your school district. The school district has to pay a certified teacher to come to your home a couple of times a week, bring work to your child, and also tutor that child if it is necessary.
How are 504 modifications different from Individual Education Plan?
- 504 modifications differ from IEPs for special education because 504's are meant for all people/children with disabilities. The modifications are simply meant to level the playing field and ensure that that students with disabilities are allowed to participate as freely as possible in the education process. IEPs are meant for a small subset of students with disabilities, since not all disabilities automatically qualify you for special education services. A person can be disabled but have no learning problems.
- Contact your school and request that you meet with your child's school counselor.
- Fill out the 504 request form. *****AUTISM AND ADHD ARE COVERED BY THE 504*****
- You will then be set up for a meeting between you, your child's teachers, and school administration. Your child will also meet with the school's nurse, psychologist and whom ever else is necessary to figure out what your child's needs are. Be sure to bring any medical evaluations of your child and letters from your child's doctor documenting your child's medical condition.
- A 504 Plan will be developed for your child that will (hopefully) meet your child's needs. REMEMBER!! YOU DON'T HAVE SO SIGN ANYTHING THAT YOU DON'T AGREE WITH. The 504 Plan then becomes a legally binding contract that your child's school must follow.
Exact wording of the Rehabilitation Act, Section 504
Special Education Law by State
Friday, October 22, 2010
This Is My Issue
Last night I was perusing my satellite guide, and noticed that the fund raiser for autism awareness and education was on Comedy Central. Despite my daughter's innate hatred for all things related to John Stewart (She loves Stephen Colbert, though), I tuned in for a bit of time. It was interesting, and of course funny...well, as funny as autism awareness can be. I found myself becoming bitter, though. Not towards autism. No, that would be weird and wrong. I'm becoming increasingly bitter about why autism is getting all this attention and heightened awareness, but epilepsy gets nothing. Nada. Zip. Zilch. Zero.
1 in 110 children will be diagnosed with autism this year. Compare that to 45,000 children under the age of 18 developing epilepsy every year. I'm not a big math whiz, so I can't really begin to put the epilepsy numbers into a ratio, but my head is telling me that at the very least, the numbers are comparable.
I think it is wonderful that autism is getting the attention it deserves, and people are becoming more sensitive to all things related to autism. You see autism on television shows, with characters dealing with their child's diagnosis (Parenthood, ABC). You see rock starts advocating for autism awareness/support. You see movie and television starts making appearances for fund raisers to go towards autism research. It's all wonderful progress.
When is it going to be epilepsy's turn, though? We have Greg Grunberg. Who is that, you might ask? He was on Heroes on NBC, and his son has epilepsy. He's a super big advocate for epilepsy awareness, support, etc. He does admirable work, but let's face it, he's not a big enough star to really shake things up. We need Angelina Jolie or Miley Cyrus or Matt Damon to start getting the word out. Seriously!!
I do what I can from here. I have my sticker on my car. I talk to my high school students about epilepsy and what it means. I wear purple on the appropriate days. I support and advertise November as Epilepsy Awareness Month. I'm just one person, and starting a movement from almost literal grass roots is a little difficult.
So, this is what I want you to do. Research epilepsy. Find out what it means to have it. Email me. I'll put my email address down at the bottom. Follow me on Twitter (@marisarocks) and ask me questions. Advocacy begins with knowledge, and knowledge needs to be sought after. We can only gain support and end the stigma if people are willing to put the in the time and energy to make it happen.
Help me out here, huh?
My Email:
holland.marisa@gmail.com
1 in 110 children will be diagnosed with autism this year. Compare that to 45,000 children under the age of 18 developing epilepsy every year. I'm not a big math whiz, so I can't really begin to put the epilepsy numbers into a ratio, but my head is telling me that at the very least, the numbers are comparable.
I think it is wonderful that autism is getting the attention it deserves, and people are becoming more sensitive to all things related to autism. You see autism on television shows, with characters dealing with their child's diagnosis (Parenthood, ABC). You see rock starts advocating for autism awareness/support. You see movie and television starts making appearances for fund raisers to go towards autism research. It's all wonderful progress.
When is it going to be epilepsy's turn, though? We have Greg Grunberg. Who is that, you might ask? He was on Heroes on NBC, and his son has epilepsy. He's a super big advocate for epilepsy awareness, support, etc. He does admirable work, but let's face it, he's not a big enough star to really shake things up. We need Angelina Jolie or Miley Cyrus or Matt Damon to start getting the word out. Seriously!!
I do what I can from here. I have my sticker on my car. I talk to my high school students about epilepsy and what it means. I wear purple on the appropriate days. I support and advertise November as Epilepsy Awareness Month. I'm just one person, and starting a movement from almost literal grass roots is a little difficult.
So, this is what I want you to do. Research epilepsy. Find out what it means to have it. Email me. I'll put my email address down at the bottom. Follow me on Twitter (@marisarocks) and ask me questions. Advocacy begins with knowledge, and knowledge needs to be sought after. We can only gain support and end the stigma if people are willing to put the in the time and energy to make it happen.
Help me out here, huh?
My Email:
holland.marisa@gmail.com
Thursday, October 21, 2010
Seizure Action Plan For the Classroom
I really can't overstate how important it is to prepare you child's classroom teacher for the possibility of a seizure while at school. I've always written my own seizure plan, including a list of typical seizures that my daughter experiences, symptoms of the onset of seizures, descriptions of the seizures as they are happening, first aid for her seizures, a list of medication, her doctors' names, the ER I want her to go treated at, and (of course) my phone numbers. I provide this to the school nurse, and every teacher that she comes in contact with through the day.
Some school make a seizure plan a requirement, and the school nurse, classroom teacher, and an administrator will sit down with you and hammer out the plan. I had my first experience with this when my daughter had her last special education/IEP meeting. The making of the seizure plan became part of the IEP process. I LOVED this. I felt like the school and her teachers were a very real part of the process to ensure her safety at school. Every person that works with her now knows what to do if there is a seizure emergency. It not only gave the school peace of mind that they could handle a seizure event, but it also gave me confidence that she's in good hands if she should have a seizure.
One last thing, open communication with the school is key to this. When something new or weird presents itself with my daughter, the first people I contact (aside from the neurologist) is her classroom teacher and the school nurse. Think about it. Aside from you, who spends the most time with your child during the day? Who will be able to document odd behaviors in your child and then tell you? The classroom teacher is an often untapped resource for this. I've printed up emails and taken them with me to doctor's appointments to show the doctor that I'm not the only person that has noticed this new/weird behavior. BUT YOU HAVE TO HAVE OPEN COMMUNICATION. I try to approach the classroom teacher as if she's a part of the treatment process, and in no way do I make the communications adversarial. If the relationship between teacher and parent becomes strained, it affects so much of your child's education that it becomes a stressful situation for everyone.
I'm including a link to a website that provides a form for a seizure plan. You can fill it out and print it up to give to your child's school. Again, I'd give it to the school nurse and the classroom teacher, and then keep several copies for yourself. They're always nice to have around, just in case.
Providing a Classroom Seizure Plan
Some school make a seizure plan a requirement, and the school nurse, classroom teacher, and an administrator will sit down with you and hammer out the plan. I had my first experience with this when my daughter had her last special education/IEP meeting. The making of the seizure plan became part of the IEP process. I LOVED this. I felt like the school and her teachers were a very real part of the process to ensure her safety at school. Every person that works with her now knows what to do if there is a seizure emergency. It not only gave the school peace of mind that they could handle a seizure event, but it also gave me confidence that she's in good hands if she should have a seizure.
One last thing, open communication with the school is key to this. When something new or weird presents itself with my daughter, the first people I contact (aside from the neurologist) is her classroom teacher and the school nurse. Think about it. Aside from you, who spends the most time with your child during the day? Who will be able to document odd behaviors in your child and then tell you? The classroom teacher is an often untapped resource for this. I've printed up emails and taken them with me to doctor's appointments to show the doctor that I'm not the only person that has noticed this new/weird behavior. BUT YOU HAVE TO HAVE OPEN COMMUNICATION. I try to approach the classroom teacher as if she's a part of the treatment process, and in no way do I make the communications adversarial. If the relationship between teacher and parent becomes strained, it affects so much of your child's education that it becomes a stressful situation for everyone.
I'm including a link to a website that provides a form for a seizure plan. You can fill it out and print it up to give to your child's school. Again, I'd give it to the school nurse and the classroom teacher, and then keep several copies for yourself. They're always nice to have around, just in case.
Providing a Classroom Seizure Plan
Wednesday, October 20, 2010
Seizure First Aid
When providing seizure first aid for generalized tonic clonic (grand mal) seizures, these are the key things to remember:
•Keep calm and reassure other people who may be nearby.
•Don't hold the person down or try to stop his movements.
•Time the seizure with your watch.
•Clear the area around the person of anything hard or sharp.
•Loosen ties or anything around the neck that may make breathing difficult.
•Put something flat and soft, like a folded jacket, under the head.
•Turn him or her gently onto one side. This will help keep the airway clear.
•Do not try to force the mouth open with any hard implement or with fingers. A person having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
•Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
•Stay with the person until the seizure ends naturally.
•Be friendly and reassuring as consciousness returns.
•Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.
•Keep calm and reassure other people who may be nearby.
•Don't hold the person down or try to stop his movements.
•Time the seizure with your watch.
•Clear the area around the person of anything hard or sharp.
•Loosen ties or anything around the neck that may make breathing difficult.
•Put something flat and soft, like a folded jacket, under the head.
•Turn him or her gently onto one side. This will help keep the airway clear.
•Do not try to force the mouth open with any hard implement or with fingers. A person having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
•Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
•Stay with the person until the seizure ends naturally.
•Be friendly and reassuring as consciousness returns.
•Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.
What I'm Doing Here
In 2004, my 16 month old baby had her first seizure. I didn't know what was happening, and though I knew basically what to do when a person is having a seizure, I was woefully unprepared for what we were about to encounter. She's had hundreds of seizures in the last six years, and I've learned to work the medical and education system. It's been an exercise in trial and error. My goal with this blog (and hopefully, eventually a web site) is to create a resource for parents/caregivers of children with epilepsy (or any special need). I'm hoping that my experiences, knowledge, and rants will be helpful to someone besides myself.
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