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.
Friday, October 29, 2010
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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