Saturday, October 12, 2013
Would Like Some Feedback on a Fundraiser Idea...
Hey! This is mostly for everybody who sees this posted on the facebook support pages. I'm considering doing a fundraiser for epilepsy awareness and research in my community and want some suggestions. As in, what would you all like to see at a fundraiser? Game ideas, food ideas... This is going to be held in South Carolina, if any of you are in the Charleston area and want me to keep you posted let me know :)
Monday, October 7, 2013
Pseudo Seizures
Been reading some really interesting things on pseudo seizures lately. Wanted to share with you all, because I know some people on the seizure/epilepsy awareness sites have them. (And because I found out that up to 20% of people with pseudo seizures also have epilepsy... ) HM. Not good, considering AED's can trigger pseudo seizures in some people.
Anyway, pseudo seizures (medically called Psychogenic nonepileptic seizures) are caused by some kind of emotional disturbance, ranging from stress all the way to personality disorders such as schizophrenia. They are a physical manifestation of trauma. Pseudo seizures are almost indistinguishable from epileptic seizures, except for one thing: there is no electrical disturbance in the brain during a pseudo seizure.
Contrary to what some people believe, pseudo seizures are completely uncontrollable for the person experiencing them, just like an epileptic seizure.
Pseudo seizures are usually treated with counseling and anti-anxiety medication, and people who seek the right kind of care often see full recovery.
Anyway, pseudo seizures (medically called Psychogenic nonepileptic seizures) are caused by some kind of emotional disturbance, ranging from stress all the way to personality disorders such as schizophrenia. They are a physical manifestation of trauma. Pseudo seizures are almost indistinguishable from epileptic seizures, except for one thing: there is no electrical disturbance in the brain during a pseudo seizure.
Contrary to what some people believe, pseudo seizures are completely uncontrollable for the person experiencing them, just like an epileptic seizure.
Pseudo seizures are usually treated with counseling and anti-anxiety medication, and people who seek the right kind of care often see full recovery.
Monday, August 26, 2013
It's not always a life sentence
I haven't been writing much lately... Because I'm not quite sure what I want this blog to be. I'm trying to give information for people who are new to epilepsy, but I also want to show that it's not always a life sentence. That there is life after your diagnosis, and that it shouldn't define you. Of course, there are now limitations on what you can and can't do. You probably shouldn't swim if you're actively having seizures, you shouldn't have caffeine, guanine, taurine or ginseng. You shouldn't eat soy, or take sudafed. Depending on where you are you may not be able to drive for up to a year after a seizure... But you can have a good life. I didn't start driving until I was 19. Living in a small town with hardly any public transportation made it hard to have a job, have any kind of social life, or go to school. I had to wait. And it sucks, but I did it. I'm in a committed relationship with an amazing man who understands that sometimes, I can't take care of myself. I babysit my cousin while I'm waiting to be certified as a substitute teacher. I write, I go out with my friends and I even planned my cousin's bachelorette party recently AND WENT BAR HOPPING!!! I caught the bouquet at her wedding :) My life is so happy, despite the fact that I live every day with the fear of having a seizure. It's very real to me, but I've learned that I can't let that decide my fate. I've been through some terrible things, as I'm sure we all have, but I'm ok. And that's what I think I want to convey here. When I was diagnosed, I searched desperately for people who were successful and had taken control of their lives, despite their seizures. And I took so much comfort knowing that contrary to what I believed at the time, it was NOT a death sentence, and my life was NOT over. I think it certainly stunted me a little, I am completely lost as to who I truly am... But at the same time, it's been a VERY interesting ride, and I wouldn't trade a minute of it, because it's made me very humble and more compassionate than I thought possible.
Anyway, I want to help you all, but I also want to share my life with you, messy as it is. So please love each other, stay positive, and don't forget your meds ;)
Anyway, I want to help you all, but I also want to share my life with you, messy as it is. So please love each other, stay positive, and don't forget your meds ;)
Thursday, August 15, 2013
A little inspiration :)
So, I've been terribly busy lately, which is why I haven't been posting much, and posting something simple when I do... My cousin is getting married this weekend and I am her maid of honor :D So I've had an awful lot to do the past week. But here's another little inspirational story, that I was reminded of yesterday as I was reading the comments posted to a YouTube video about epilepsy. They were so mean, and ignorant and careless.... And I just want to remind everybody that no matter how other people treat you, you are a human being, and that you are priceless, no matter how cruel people are to you. Seizures do not make you worthless, even though it can feel that way sometimes. You are not a victim, you are strong. And even though epilepsy is a cruel beast, you have to keep fighting.
Copied from http://mbstories.quora.com/Who-Wants-This-Dollar-Bill
Cassan Said Amer tells a story about a lecturer who began a seminar holding up a one dollar bill, and asking:
- Who wants this dollar bill?
Several hands went up, but the lecturer said:
- Before handing it over, there’s something I must do.
He furiously crushed it, and asked again:
- Who still wants this bill?
The hands continued raised.
- And what if I do this?
He threw it against the wall, letting it fall to the floor, kicked it, stamped in it and again held up the bill – all dirty and crumpled. He repeated the question, and the hands continued to be held high.
- You mustn’t ever forget this scene – said the lecturer. – No matter what I do with this money, it’ll still be a one dollar bill.
“Many times in our lives, we are crushed, stamped on, kicked, maltreated, offended; however, in spite of this, we are still worth the same.”
Y'all have an awesome weekend, don't forget your meds, and I'll talk to you Sunday :)
Copied from http://mbstories.quora.com/Who-Wants-This-Dollar-Bill
Cassan Said Amer tells a story about a lecturer who began a seminar holding up a one dollar bill, and asking:
- Who wants this dollar bill?
Several hands went up, but the lecturer said:
- Before handing it over, there’s something I must do.
He furiously crushed it, and asked again:
- Who still wants this bill?
The hands continued raised.
- And what if I do this?
He threw it against the wall, letting it fall to the floor, kicked it, stamped in it and again held up the bill – all dirty and crumpled. He repeated the question, and the hands continued to be held high.
- You mustn’t ever forget this scene – said the lecturer. – No matter what I do with this money, it’ll still be a one dollar bill.
“Many times in our lives, we are crushed, stamped on, kicked, maltreated, offended; however, in spite of this, we are still worth the same.”
Y'all have an awesome weekend, don't forget your meds, and I'll talk to you Sunday :)
Sunday, August 11, 2013
Are you a coffee bean?
Saw this story the other day- wanted to share it with you all. I copied it from http://www.learningplaceonline.com/living/inspiration/cup-coffee.htm. While you read, think of it in term of your loved one's, or your own epilepsy. How has it affected you personally? How can you make the best out of your situation, or help someone you love?
I took this story very personally, because I have faced more adversity than just epilepsy. And even though I found out that I am stronger than I thought I was, I am a coffee bean.
< 3 Sarah
"A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose.
Her mother took her to the kitchen. She filled three pots with water. In the first, she placed carrots, in the second she placed eggs and the last she placed ground coffee beans. She let them sit and boil without saying a word.
In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.
Turning to her daughter, she asked, "Tell me what do you see?"
"Carrots, eggs, and coffee," she replied.
She brought her closer and asked her to feel the carrots. She did and noted that they were soft. She then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, she asked her to sip the coffee. The daughter smiled, as she tasted its rich aroma.
The daughter then asked. "What does it mean, mother?"
Her mother explained that each of these objects had faced the same adversity—boiling water—but each reacted differently.
The carrot went in strong, hard and unrelenting. However after being subjected to the boiling water, it softened and became weak.
The egg had been fragile. Its thin outer shell had protected its liquid interior. But, after sitting through the boiling water, its inside became hardened.
The ground coffee beans were unique, however. After they were in the boiling water they had changed the water.
"Which are you?" she asked her daughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?"
Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity, do I wilt and become soft and lose my strength?
Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart?
Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor.
If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hours are the darkest and trials are their greatest do you elevate to another level?
How do you handle Adversity? Are you a Carrot, an egg, or a coffee bean? "I took this story very personally, because I have faced more adversity than just epilepsy. And even though I found out that I am stronger than I thought I was, I am a coffee bean.
< 3 Sarah
Thursday, August 8, 2013
Seizure Protocol
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
This is for anyone who does not know proper protocol for a tonic-clonic seizure.
If You See Someone Having a Seizure
1.) Stay Calm.
2.) Remember that the person is not consciously suffering during the seizure.
3.) Never try to restrain the person
4.) NEVER put anything in the person's mouth.
5.) Turn the person on their right side (left is acceptable if this is not possible), and slightly forward. The tongue cannot be swallowed or choked on, but it can block the person's airway.
6.) If possible, put something under the person's head to prevent injury.
7.) Try to move anything that could cause injury away from the person.
8.) Always time the seizure.
Call 911 if:
1.) the seizure lasts longer than 3 minutes
2.) the person is pregnant
3.) the person has no known history of seizures (if the person is a stranger call 911 if they have no medical alert jewelry)
4.) the person is not breathing for longer than 30 seconds
5.) the person has been injured during the seizure
What to Do After The Seizure
1.) When the person regains consciousness, reassure and comfort them and explain what happened. Remember, although the seizure itself does not hurt, it can hurt after, and can be a very emotional and stressful time.
2.) The person may feel groggy and/or dazed. If the person is a stranger ask if there is anything you can do for them, or anybody you can call.
3.) Stay with the person until they are fully conscious and aware.
4.) If they have to wait for someone to get them offer to stay until somebody arrives.
5.) If you notice that the person is slow to regain full consciousness (longer than 30 mins) call 911
This is for anyone who does not know proper protocol for a tonic-clonic seizure.
If You See Someone Having a Seizure
1.) Stay Calm.
2.) Remember that the person is not consciously suffering during the seizure.
3.) Never try to restrain the person
4.) NEVER put anything in the person's mouth.
5.) Turn the person on their right side (left is acceptable if this is not possible), and slightly forward. The tongue cannot be swallowed or choked on, but it can block the person's airway.
6.) If possible, put something under the person's head to prevent injury.
7.) Try to move anything that could cause injury away from the person.
8.) Always time the seizure.
Call 911 if:
1.) the seizure lasts longer than 3 minutes
2.) the person is pregnant
3.) the person has no known history of seizures (if the person is a stranger call 911 if they have no medical alert jewelry)
4.) the person is not breathing for longer than 30 seconds
5.) the person has been injured during the seizure
What to Do After The Seizure
1.) When the person regains consciousness, reassure and comfort them and explain what happened. Remember, although the seizure itself does not hurt, it can hurt after, and can be a very emotional and stressful time.
2.) The person may feel groggy and/or dazed. If the person is a stranger ask if there is anything you can do for them, or anybody you can call.
3.) Stay with the person until they are fully conscious and aware.
4.) If they have to wait for someone to get them offer to stay until somebody arrives.
5.) If you notice that the person is slow to regain full consciousness (longer than 30 mins) call 911
Tuesday, August 6, 2013
Lumosity
Today I want to talk about the smartphone app Lumosity, and how much I'm in love with it. Lumosity's website claims that it's games are all designed by neuroscientists. Sounds awesome. My memory has been affected a lot by Lamictal and my seizures, and I'm always looking for things to help, and this is definitely helping. I've been using the free version, which is way less in depth, but I've been improving on the games steadily. I've pretty much mastered one. If your seizures are at all triggered by intense calculation/quick thinking (mine used to be) I would not recommend this.
My favorite game is "Lost in Migration". There's a group of birds, shaped in different patterns, and you have to slide your finger in the direction of the middle bird. Usually the other birds are facing a different direction, so it can really throw you off.
The one I find the most difficult is called "Chalkboard Challenge". There are either numbers, simple math problems, or slightly more complex math problems on two different cards, and you have to decide which value is higher. That one makes me crazy, but it definitely helps with quick problem solving.
The app is free, and gives you 35 daily training sessions of seven different games. If you want a year's subscription to get all the other games it's 80$ for the year. Not bad. As soon as I have the extra I'm definitely doing it.
My favorite game is "Lost in Migration". There's a group of birds, shaped in different patterns, and you have to slide your finger in the direction of the middle bird. Usually the other birds are facing a different direction, so it can really throw you off.
The one I find the most difficult is called "Chalkboard Challenge". There are either numbers, simple math problems, or slightly more complex math problems on two different cards, and you have to decide which value is higher. That one makes me crazy, but it definitely helps with quick problem solving.
The app is free, and gives you 35 daily training sessions of seven different games. If you want a year's subscription to get all the other games it's 80$ for the year. Not bad. As soon as I have the extra I'm definitely doing it.
Sunday, August 4, 2013
Thought for the Day....
I'm feeling sick today, so today's post is short. Here's a nice quote and some thoughts to go with it.
"The question isn't who is going to let me- it's who is going to stop me." - Ayn Rand
I think we as humans in general allow stigmas and ignorance to play a role in how we behave. I think this is even more true for people with epilepsy. A lot of us don't talk about it outside our support groups because we're afraid others won't understand, or that we'll be judged. But we're nurses, writers, mothers, fathers, artists and much, much more. Don't let them stop you- prove them wrong.
"The question isn't who is going to let me- it's who is going to stop me." - Ayn Rand
I think we as humans in general allow stigmas and ignorance to play a role in how we behave. I think this is even more true for people with epilepsy. A lot of us don't talk about it outside our support groups because we're afraid others won't understand, or that we'll be judged. But we're nurses, writers, mothers, fathers, artists and much, much more. Don't let them stop you- prove them wrong.
Saturday, August 3, 2013
Famous People With Epilepsy
Scholars have long marveled at the fact that many great minds, leaders, artists and creative thinkers have also suffered from epilepsy. Could there be a connection? I like to think so. I like to think that maybe I'm one of them. Who knows? Today I have a just for fun post for you- a list of famous people (actors, leaders, musicians, politicians, writers) throughout history who either had a diagnosis of epilepsy while they were alive, or a retrospective diagnosis based on historical writings and literature from their times.
NOTE: I have read before that Lewis Carroll And Edgar Allen Poe had alcohol withdrawal/drug induced seizures. Take that however you wish :)
Leonardo Da Vinci
Truman Capote
Charles Dickens
Michaelangelo
Alfred Nobel
Neil Young
Aristotle
Socrates
Julius Caesar
Vincent Van Gogh
Edgar Allen Poe
Lewis Carroll
Dante Alighieri (author of Inferno, The Divine Comedy)
Moliere (author)
Sir Walter Scott (author)
Jonathan Swift (author of Gulliver’s Travels)
Lord Byron
Percy Bysshe Shelley
Alfred Lord Tennyson
Dostoevsky (author of Crime and Punishment)
Leo Tolstoy (author of Anna Karenina and War and Peace)
Gustave Flaubert
Charles V (King of Austria)
Prince John (youngest son of King George V of England)
Pope Pius IX (in the 1800’s became the longest serving pontiff in history, he also died from a seizure
induced heart attack)
Martha Parke Custis(step-daughter of George Washington)
US President James Madison
Vladimir Lenin (founder of the Soviet Union & died from status epilepticus)
Senator Ted Kennedy
US Supreme Court Chief Justice John Roberts
Richard Burton (actor)
Bud Abbott (of Abbott&Costello)
Danny Glover (actor)
Hugo Weaving (actor)
Margot Hemingway(actress&granddaughter of Ernest Hemingway)
Florence Griffith Joyner (FloJo)(Athlete)
Samari Rolle ( Baltimore Ravens cornerback)
Jason Snelling (Atlanta Falcons starting lineup)
Alan Faneca, (Pro Bowl guard, Pittsburgh Steelers)
Agatha Christie
Alexander The Great
Lil' Wayne
NOTE: I have read before that Lewis Carroll And Edgar Allen Poe had alcohol withdrawal/drug induced seizures. Take that however you wish :)
Leonardo Da Vinci
Truman Capote
Charles Dickens
Michaelangelo
Alfred Nobel
Neil Young
Aristotle
Socrates
Julius Caesar
Vincent Van Gogh
Edgar Allen Poe
Lewis Carroll
Dante Alighieri (author of Inferno, The Divine Comedy)
Moliere (author)
Sir Walter Scott (author)
Jonathan Swift (author of Gulliver’s Travels)
Lord Byron
Percy Bysshe Shelley
Alfred Lord Tennyson
Dostoevsky (author of Crime and Punishment)
Leo Tolstoy (author of Anna Karenina and War and Peace)
Gustave Flaubert
Charles V (King of Austria)
Prince John (youngest son of King George V of England)
Pope Pius IX (in the 1800’s became the longest serving pontiff in history, he also died from a seizure
induced heart attack)
Martha Parke Custis(step-daughter of George Washington)
US President James Madison
Vladimir Lenin (founder of the Soviet Union & died from status epilepticus)
Senator Ted Kennedy
US Supreme Court Chief Justice John Roberts
Richard Burton (actor)
Bud Abbott (of Abbott&Costello)
Danny Glover (actor)
Hugo Weaving (actor)
Margot Hemingway(actress&granddaughter of Ernest Hemingway)
Florence Griffith Joyner (FloJo)(Athlete)
Samari Rolle ( Baltimore Ravens cornerback)
Jason Snelling (Atlanta Falcons starting lineup)
Alan Faneca, (Pro Bowl guard, Pittsburgh Steelers)
Agatha Christie
Alexander The Great
Lil' Wayne
Friday, August 2, 2013
Seizure Combating Diets (Treatment Options For Children With Epilepsy Part II)
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
This is part 2 for my friend :)
The Ketogenic Diet
Normally, your body runs on energy created from glucose. But since we can't store much glucose at a time, we never have more than a 24 hour supply. The ketogenic diet will begin by depriving your child of food for 24 hours, so his body will begin burning stored fat instead of glucose.
The diet consists of high fat and low carbohydrate ( which the body turns into glucose) foods, and forces the body into burning fat, instead of glucose. Around 80% of the calories in your child's diet will come from fat. This mimics starvation in the body, and doctors have no idea why it works (go figure). It has been used to treat Epilepsy since at least 500 B.C., and even has biblical roots, in the form of fasting.
Usually, this diet will need to be tailored over time to fit an individual's needs before results are seen, or not seen. Usually doctors ask a period of up to three months to give the body time to adjust. Only about 1/3 of children do not thrive on the diet; either their seizure frequency does not change, or the diet is not well tolerated. 1/3 become seizure free or close to it, and the other 1/3 see improvement.
Usually children on the ketogenic diet stay on their anti-convulsants, but their dose can be lowered, or even stopped all together if their doctor feels it's an acceptable risk. This especially of benefit to younger children who seem to have stronger side effects of some medications. Parent's report their children being more alert while on the diet, even if their seizures do not improve.
Doctors will usually prescribe the diet for a certain amount of time, then slowly start introducing other foods into the child's diet to see if seizure control can still be achieved.
Like everything else in life, the diet does have some side effects. Some of those side effects include constipation, dehydration, and complications from kidney stones/gall stones. The diet also lack many vitamins that are essential- so supplementation is necessary. Since the diet is so high in fat, high levels of fat can build up in the blood.
Modified Atkins
The Atkins diet, in one study, was found to also produce ketones in the body, the same as the ketogenic diet, but it seems only in children. This may be a better option for some children because it does not restrict calories. The Atkins diet, like the ketogenic diet, is low in carbohydrates and high in fats, but is also high in protein. This also makes it a little more desirable for children.
http://ramblingsofacarnivore.blogspot.com/2010/05/ketogenic-diets-and-treatment-of.html
http://www.epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1176378/
This is part 2 for my friend :)
The Ketogenic Diet
Normally, your body runs on energy created from glucose. But since we can't store much glucose at a time, we never have more than a 24 hour supply. The ketogenic diet will begin by depriving your child of food for 24 hours, so his body will begin burning stored fat instead of glucose.
The diet consists of high fat and low carbohydrate ( which the body turns into glucose) foods, and forces the body into burning fat, instead of glucose. Around 80% of the calories in your child's diet will come from fat. This mimics starvation in the body, and doctors have no idea why it works (go figure). It has been used to treat Epilepsy since at least 500 B.C., and even has biblical roots, in the form of fasting.
Usually, this diet will need to be tailored over time to fit an individual's needs before results are seen, or not seen. Usually doctors ask a period of up to three months to give the body time to adjust. Only about 1/3 of children do not thrive on the diet; either their seizure frequency does not change, or the diet is not well tolerated. 1/3 become seizure free or close to it, and the other 1/3 see improvement.
Usually children on the ketogenic diet stay on their anti-convulsants, but their dose can be lowered, or even stopped all together if their doctor feels it's an acceptable risk. This especially of benefit to younger children who seem to have stronger side effects of some medications. Parent's report their children being more alert while on the diet, even if their seizures do not improve.
Doctors will usually prescribe the diet for a certain amount of time, then slowly start introducing other foods into the child's diet to see if seizure control can still be achieved.
Like everything else in life, the diet does have some side effects. Some of those side effects include constipation, dehydration, and complications from kidney stones/gall stones. The diet also lack many vitamins that are essential- so supplementation is necessary. Since the diet is so high in fat, high levels of fat can build up in the blood.
Modified Atkins
The Atkins diet, in one study, was found to also produce ketones in the body, the same as the ketogenic diet, but it seems only in children. This may be a better option for some children because it does not restrict calories. The Atkins diet, like the ketogenic diet, is low in carbohydrates and high in fats, but is also high in protein. This also makes it a little more desirable for children.
http://ramblingsofacarnivore.blogspot.com/2010/05/ketogenic-diets-and-treatment-of.html
http://www.epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1176378/
Thursday, August 1, 2013
Treatment Options for Children With Epilepsy
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
I was talking to a new friend yesterday, and she was telling me how much trouble she's having with her daughter's medications. Since writing and research is my god given skill, this is for her to take to her daughter's next neurologist appointment.
Depakote: Depakote is approved for children, but has a much higher instance of liver failure in children under the age of 3 than in adults and older children. Liver damage will usually occur withing the first six months of treatment and the first signs are vomiting, yellowing of the skin or eyes, loss of appetite, sluggishness, and possible loss of seizure control.
In girls over ten, higher than normal testosterone levels are sometimes observed.
Common side effects include:
mild drowsiness or weakness;
diarrhea, constipation, upset stomach;
changes in your menstrual periods;
enlarged breasts, weight changes;
tremor (shaking);
hair loss;
vision changes; or
unusual or unpleasant taste in your mouth
Serious side effects include:
unexplained weakness with vomiting and confusion or fainting;
easy bruising or bleeding, blood in your urine;
fever, chills, body aches, swollen glands, flu symptoms;
urinating less than usual;
extreme drowsiness, lack of coordination, hallucinations;
double vision or back-and-forth movements of the eyes; or
To reduce side effects, usually a doctor will start your child at a low dose and slowly increase.
Felbatol: Felbatol is only approved for children 14 and older and is used to treat partial epilepsy as adjunctive and monotherapy, and is approved as adjunctive therapy for generalized epilepsy associated with Lennox-Gastaut syndrome in patients 2 years and older (http://professionals.epilepsy.com/medications/p_felbatol_children.html)
Common side effects include:
Other reported side effects are: poor coordination or tremor (shaking), vision problems, dizziness, vomiting, mood changes or anxiety, sleepiness
Oxtellar: Oxtellar is approved for children ages 6 and up as adjunctive therapy in the treatment of partial seizures.
Common side effects include:
Zonegran: Zonegran has not officially been approved for children. However, studies done in children of varying ages have yielded good results. It has effectively reduced many types of seizures, namely myoclonic, absence, infantile spasms, and generalized seizures.
Most children will not see many side effects, however, side effects are always possible.
Common side effects include:
Lamictal: Lamictal is approved for use as adjunctive therapy for partial seizures in children as young as two, and for generalized seizures in children with Lennox-Gastaut syndrome.
Lamictal, when used with Valproate, increases the risk of severe, life threatening rash associated with the medications.
Common side effects include:
tremors, dizziness, tired feeling;
blurred vision, double vision;
loss of coordination;
changes in your menstrual periods;
dry mouth, mild nausea, stomach pain, upset stomach;
back pain;
sleep problems (insomnia); or
runny nose, sore throat.
More serious side effects include:
the first sign of any skin rash, no matter how mild;
fever, swollen glands, body aches, flu symptoms, headache, neck stiffness, increased sensitivity to light;
easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
upper stomach pain, loss of appetite, dark urine, jaundice (yellowing of the skin or eyes);
chest pain, irregular heart rhythm, feeling short of breath;
confusion, nausea and vomiting, swelling, rapid weight gain, urinating less than usual or not at all;
pale skin, feeling light-headed or short of breath, rapid heart rate, trouble concentrating; or
increased seizures or worsening of your bipolar disorder
Keppra: Keppra is approved to treat partial onset seizures in children one month of age and older. It has shown to decrease the frequency of other kinds of seizures as well.
Common side effects include:
Common side effects include:
Common side effects include:
headache, mental slowness, trouble concentrating;
problems with speech, balance, or walking;
dizziness, drowsiness, tired feeling;
mild nausea, vomiting, upset stomach, diarrhea;
blurred vision, double vision;
tremors or shaking; or
skin rash.
More serious side effects include:
increased seizures;
swollen glands, fever, chills, body aches, flu symptoms, sores in your mouth and throat;
easy bruising, unusual bleeding (nose, mouth, vagina, or rectum), purple or red pinpoint spots under your skin;
severe tingling, numbness, pain, muscle weakness;
urinating less than usual or not at all;
chest pain, dry cough, wheezing, feeling short of breath;
upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); or
severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
Topamax: Topamax is approved in the treatment of seizures in children over two as monotherapy and adjunctive therapy.
Common side effects are:
mild dizziness, feeling nervous;
numbness or tingly feeling;
diarrhea, weight loss; or
cold symptoms such as stuffy nose, sneezing, sore throat.
More serious side effects include:
sudden vision loss, pain around or behind your eyes;
dry mouth, increased thirst, drowsiness, decreased sweating, increased body temperature, and hot, dry skin,
confusion, slowed thinking, memory problems, trouble concentrating, problems with speech or balance;
vomiting, loss of appetite, tired feeling, irregular heartbeats, feeling like you might pass out; or
severe pain in your side or lower back, painful or difficult urination.
Neurontin: Neurontin is approved for use in children as young as 3 for threatment of partial seizures.
Common side effects include:
dizziness, drowsiness, weakness, tired feeling;
nausea, diarrhea, constipation;
blurred vision;
headache;
breast swelling;
dry mouth; or
loss of balance or coordination.
More serious side effects include:
increased seizures;
fever, swollen glands, body aches, flu symptoms;
skin rash, easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
upper stomach pain, loss of appetite, dark urine, jaundice (yellowing of the skin or eyes);
chest pain, irregular heart rhythm, feeling short of breath;
confusion, nausea and vomiting, swelling, rapid weight gain, urinating less than usual or not at all;
new or worsening cough, fever, trouble breathing; or
rapid back and forth movement of your eyes.
Some side effects are more common in children:
changes in behavior;
memory problems;
trouble concentrating; or
acting restless, hostile, or aggressive.
Zarontin: Zarontin has been used for many years to treat absence seizures in children. Side effects are usually mild and usually are stomach related.
Common side effects include:
upset stomach, mild nausea, stomach cramps, diarrhea, weight loss;
swelling in your tongue or gums;
headache, dizziness, drowsiness, feeling tired;
lack of balance or coordination; or
unusual vaginal bleeding.
More serious side effects include:
fever, chills, flu symptoms, sore throat, swollen glands, feeling very weak;
easy bruising, unusual bleeding (nose, mouth, vagina, or rectum), purple or red pinpoint spots under your skin;
joint pain or swelling with mild fever, muscle aches, chest pain when breathing;
patchy skin color, red spots, or a butterfly shaped skin rash over your cheeks and nose (worsens in sunlight);
skin rash, severe tingling, numbness, pain, muscle weakness;
confusion, hallucinations, unusual thoughts or behavior, extreme fear;
severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling; or
worsening of seizures.
Dilantin: Dilantin is usually NOT a first choice for children, however some doctors will prescribe it when they find it necessary.
The reason for this is a gum disorder called gingival hyperplasia and hirsutism, which occurs in nearly half of children who take Dilantin.
Common side effects include:
mild skin rash or itching;
dizziness, nervousness, sleep problems (insomnia);
nausea, vomiting, constipation; or
headache, joint pain.
Serious side effects include:
swollen glands, easy bruising or bleeding, swollen or tender gums;
fever, sore throat, and headache with a severe blistering, peeling, and red skin rash;
the first sign of any skin rash, no matter how mild;
confusion, hallucinations, unusual thoughts or behavior;
slurred speech, loss of balance or coordination;
tremor (uncontrolled shaking), restless muscle movements in your eyes, tongue, jaw, or neck;
extreme thirst or hunger, urinating more than usual;
loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); or
changes in the shape of your face or lips.
Carbatrol: While useful in treating many different kinds of seizures in children, it can worsen others, so correct diagnosis is very important.
Common side effects include:
feeling dizzy, drowsy, or unsteady;
nausea, vomiting, diarrhea, constipation, stomach pain;
headache, ringing in your ears;
dry mouth, swollen tongue; or
joint or muscle pain, leg cramps.
More serious side effects include:
pale skin, feeling light-headed, rapid heart rate, trouble concentrating;
fever, chills, sore throat, mouth and throat ulcers;
easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
confusion, agitation, vision problems, hallucinations;
feeling short of breath, swelling of your ankles or feet;
urinating less than usual;
jaundice (yellowing of the skin or eyes); or
severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
http://www.rxlist.com/lamictal-drug/patient-images-side-effects.htm
http://www.webmd.com/drugs/drug-18053-Keppra+Oral.aspx?drugid=18053&drugname=Keppra+Oral
http://www.drugs.com/sfx/zonegran-side-effects.html
http://www.epilepsyfoundation.org/news/UCB-announces-FDA-approval-for-Keppra-in-infants-and-children-from-one-month-of-age-with-partial-onset-seizures.cfm
http://www.epilepsy.com/medications/b_depakote_children
http://www.drugs.com/sfx/keppra-side-effects.html
http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=aa610e56-1d1d-11e1-8bc2-0800200c9a66
http://www.rxlist.com/oxtellar-xr-side-effects-drug-center.htm
http://www.epilepsy.com/medications/i_gabitril_children
http://www.medicines.org.uk/emcmobile/medicine/10840/spc
http://www.drugs.com/sfx/gabitril-side-effects.html
http://whatmeds.stanford.edu/medications/oxcarbazepine.html
http://www.rxlist.com/trileptal-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_topamax_children.html
http://www.rxlist.com/topamax-side-effects-druhttp://whatmeds.stanford.edu/medications/gabapentin.htmlg-center.htm
http://www.rxlist.com/neurontin-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_zarontin_children.html
http://www.rxlist.com/zarontin-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_dilantin_children.html
http://www.rxlist.com/dilantin-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_carbatrol_children.html
I was talking to a new friend yesterday, and she was telling me how much trouble she's having with her daughter's medications. Since writing and research is my god given skill, this is for her to take to her daughter's next neurologist appointment.
Depakote: Depakote is approved for children, but has a much higher instance of liver failure in children under the age of 3 than in adults and older children. Liver damage will usually occur withing the first six months of treatment and the first signs are vomiting, yellowing of the skin or eyes, loss of appetite, sluggishness, and possible loss of seizure control.
In girls over ten, higher than normal testosterone levels are sometimes observed.
Common side effects include:
Serious side effects include:
To reduce side effects, usually a doctor will start your child at a low dose and slowly increase.
Felbatol: Felbatol is only approved for children 14 and older and is used to treat partial epilepsy as adjunctive and monotherapy, and is approved as adjunctive therapy for generalized epilepsy associated with Lennox-Gastaut syndrome in patients 2 years and older (http://professionals.epilepsy.com/medications/p_felbatol_children.html)
Common side effects include:
- decreased appetite and weight loss,
- nausea,
- insomnia (sleeplessness),
- headache
Other reported side effects are: poor coordination or tremor (shaking), vision problems, dizziness, vomiting, mood changes or anxiety, sleepiness
Oxtellar: Oxtellar is approved for children ages 6 and up as adjunctive therapy in the treatment of partial seizures.
Common side effects include:
- dizziness, sleepiness,
- headache,
- balance problems,
- double vision,
- tremor,
- weakness,
- fatigue, and
- vomiting.
Zonegran: Zonegran has not officially been approved for children. However, studies done in children of varying ages have yielded good results. It has effectively reduced many types of seizures, namely myoclonic, absence, infantile spasms, and generalized seizures.
Most children will not see many side effects, however, side effects are always possible.
Common side effects include:
- loss of balance or coordination.
- dizziness
- drowsiness
- increased or worsening seizures
- pale skin, feeling light-headed or short of breath, rapid heart rate, trouble concentrating
- fever, chills, body aches, flu symptoms, sores in your mouth and throat
- severe pain in your lower back, blood in your urine
- loss of appetite, tired feeling, problems with thinking or speech, trouble concentrating
- feeling very thirsty or hot, being unable to urinate, heavy sweating, or hot and dry skin without sweating
- the first sign of any skin rash, no matter how mild
- severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling
Lamictal: Lamictal is approved for use as adjunctive therapy for partial seizures in children as young as two, and for generalized seizures in children with Lennox-Gastaut syndrome.
Lamictal, when used with Valproate, increases the risk of severe, life threatening rash associated with the medications.
Common side effects include:
More serious side effects include:
Keppra: Keppra is approved to treat partial onset seizures in children one month of age and older. It has shown to decrease the frequency of other kinds of seizures as well.
Common side effects include:
- mild dizziness or drowsiness
- mild tired feeling
- loss of appetite
- stuffy nose
- hallucinations, unusual thoughts or behavior
- bruising, severe tingling, numbness, pain, muscle weakness
- feeling very weak or tired
- fever, chills, body aches, flu symptoms, sores in your mouth and throat
- problems with walking or movement
- the first sign of any skin rash, no matter how mild
- severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling
Common side effects include:
- dizziness, drowsiness, weakness, tired feeling
- feeling restless, irritable, or depressed
- nausea, vomiting, stomach pain, diarrhea
- trouble concentrating
- sleep problems (insomnia)
- lack of coordination
- cough, sore throat
- weight changes
- new or worsened seizures
- confusion, hallucination
- problems with speech or vision
- severe blistering, peeling, and red skin rash
- tremor
- fever, chills, body aches, flu symptoms
- chest pain, fast heart rate
Common side effects include:
More serious side effects include:
Topamax: Topamax is approved in the treatment of seizures in children over two as monotherapy and adjunctive therapy.
Common side effects are:
More serious side effects include:
Neurontin: Neurontin is approved for use in children as young as 3 for threatment of partial seizures.
Common side effects include:
More serious side effects include:
Some side effects are more common in children:
Zarontin: Zarontin has been used for many years to treat absence seizures in children. Side effects are usually mild and usually are stomach related.
Common side effects include:
More serious side effects include:
Dilantin: Dilantin is usually NOT a first choice for children, however some doctors will prescribe it when they find it necessary.
The reason for this is a gum disorder called gingival hyperplasia and hirsutism, which occurs in nearly half of children who take Dilantin.
Common side effects include:
Serious side effects include:
Carbatrol: While useful in treating many different kinds of seizures in children, it can worsen others, so correct diagnosis is very important.
Common side effects include:
More serious side effects include:
http://www.rxlist.com/lamictal-drug/patient-images-side-effects.htm
http://www.webmd.com/drugs/drug-18053-Keppra+Oral.aspx?drugid=18053&drugname=Keppra+Oral
http://www.drugs.com/sfx/zonegran-side-effects.html
http://www.epilepsyfoundation.org/news/UCB-announces-FDA-approval-for-Keppra-in-infants-and-children-from-one-month-of-age-with-partial-onset-seizures.cfm
http://www.epilepsy.com/medications/b_depakote_children
http://www.drugs.com/sfx/keppra-side-effects.html
http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=aa610e56-1d1d-11e1-8bc2-0800200c9a66
http://www.rxlist.com/oxtellar-xr-side-effects-drug-center.htm
http://www.epilepsy.com/medications/i_gabitril_children
http://www.medicines.org.uk/emcmobile/medicine/10840/spc
http://www.drugs.com/sfx/gabitril-side-effects.html
http://whatmeds.stanford.edu/medications/oxcarbazepine.html
http://www.rxlist.com/trileptal-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_topamax_children.html
http://www.rxlist.com/topamax-side-effects-druhttp://whatmeds.stanford.edu/medications/gabapentin.htmlg-center.htm
http://www.rxlist.com/neurontin-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_zarontin_children.html
http://www.rxlist.com/zarontin-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_dilantin_children.html
http://www.rxlist.com/dilantin-side-effects-drug-center.htm
http://professionals.epilepsy.com/medications/p_carbatrol_children.html
Tuesday, July 30, 2013
Migraines and Epilepsy
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
Ok, short post today, but I think this is pretty interesting.
According to epilepsy.com individuals with one disorder are at least twice as likely to have the other. In addition, people with close family members who suffer from a seizure disorder are also more likely to have migraines.
So basically, if you're epileptic, you have a much higher chance of having migraines than the general population. Which quite frankly sucks. I have horrible migraines and tension headaches, and when I told my neurologist about them, he told me that he'd been waiting for that visit.
Migraines, like seizures, are caused by excess electricity in the brain, which explains why so many of us are on an AED like Topamax as a migraine preventative. The link between migraines and epilepsy appears to be stronger in those with a family history of epilepsy, like me and Sammy.
Migraines can be preceded by an aura, just like a seizure. Migraines are typically accompanied by nausea and extreme sensitivity to light.
http://professionals.epilepsy.com/page/migraine.html
http://www.epilepsyfoundation.org/news/Epilepsy_And_Migraine.cfm
Ok, short post today, but I think this is pretty interesting.
According to epilepsy.com individuals with one disorder are at least twice as likely to have the other. In addition, people with close family members who suffer from a seizure disorder are also more likely to have migraines.
So basically, if you're epileptic, you have a much higher chance of having migraines than the general population. Which quite frankly sucks. I have horrible migraines and tension headaches, and when I told my neurologist about them, he told me that he'd been waiting for that visit.
Migraines, like seizures, are caused by excess electricity in the brain, which explains why so many of us are on an AED like Topamax as a migraine preventative. The link between migraines and epilepsy appears to be stronger in those with a family history of epilepsy, like me and Sammy.
Migraines can be preceded by an aura, just like a seizure. Migraines are typically accompanied by nausea and extreme sensitivity to light.
http://professionals.epilepsy.com/page/migraine.html
http://www.epilepsyfoundation.org/news/Epilepsy_And_Migraine.cfm
Monday, July 29, 2013
Keppra and Throwing Frogs
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
Keppra is available in 4 different doses (250, 500, 750 and 1000mg) and as a clear, grape flavored liquid (100mg/mL).
Keppra is unlike any other anti-epileptic chemically. Meaning it does not belong to any of the classifications of AED's that existed when it was discovered.
I want to talk about some of the very real side effects of Keppra that, fortunately for those of you who have been perscribed it, are considered to be very rare. The purpose of this post is not to dissuade you from using this product, but to offer you a little perspective, and to warn you that these posted side effects are possible, and are NOT put on packaging simply for liability reasons.
I was prescribed Keppra when I was first diagnosed, and things went from bad to worse in less than a week. My seizures stopped completely; that was great. The drug certainly does it's job. But after just a few days, I started feeling a little homicidal. Everything made me angry, including frogs croaking in my backyard, which is why my sisters call it the "frog throwing medicine", I'd get so angry about it, I'd pick them up and throw them over the fence. Every person who so much as looked at me wrong got some pretty innapropriate language. I was mean. I was mean to my mom, my sisters, my dad, everyone except my sweet old hound dog, who knew when I was going to have a seizure.
After about a week and a half, the borderline suicidal thoughts started creeping in. I wouldn't say that I wanted to kill myself, but I definitely didn't want to be alive. I didn't want to eat, write, watch tv, or do any of the things I normally loved. Yes, I love food. Stop laughing.
After about a month, I was unbearable, even to myself. I couldn't stand the person I saw looking back at me, and decided I'd rather have seizures.
I kind of shock myself saying that out loud sometimes, because seizures are pretty much the most horrible thing in the world, right? Well, even Keppra me agreed that the way I was living on this drug was worse than having seizures. So I got off of it after taking it for almost two months.
My doctor prescribed me Lamictal, and I've been taking it ever since. I had a few seizures when I first started Lamictal and a couple when I got the stomach flu, but otherwise it has worked amazingly, and I'm blessed to live a relatively normal (ok, not "normal", but I'm happpy, see :D)life.
The most common side effects of Keppra are drowsiness, dizziness and weakness, which usually resolve in the first month of taking the drug.
Serious side effects are loss of coordination, mental/mood changes (such as irritability, aggression, agitation, anger, anxiety).
http://www.rxlist.com/keppra-drug.htm
Keppra is available in 4 different doses (250, 500, 750 and 1000mg) and as a clear, grape flavored liquid (100mg/mL).
Keppra is unlike any other anti-epileptic chemically. Meaning it does not belong to any of the classifications of AED's that existed when it was discovered.
I want to talk about some of the very real side effects of Keppra that, fortunately for those of you who have been perscribed it, are considered to be very rare. The purpose of this post is not to dissuade you from using this product, but to offer you a little perspective, and to warn you that these posted side effects are possible, and are NOT put on packaging simply for liability reasons.
I was prescribed Keppra when I was first diagnosed, and things went from bad to worse in less than a week. My seizures stopped completely; that was great. The drug certainly does it's job. But after just a few days, I started feeling a little homicidal. Everything made me angry, including frogs croaking in my backyard, which is why my sisters call it the "frog throwing medicine", I'd get so angry about it, I'd pick them up and throw them over the fence. Every person who so much as looked at me wrong got some pretty innapropriate language. I was mean. I was mean to my mom, my sisters, my dad, everyone except my sweet old hound dog, who knew when I was going to have a seizure.
After about a week and a half, the borderline suicidal thoughts started creeping in. I wouldn't say that I wanted to kill myself, but I definitely didn't want to be alive. I didn't want to eat, write, watch tv, or do any of the things I normally loved. Yes, I love food. Stop laughing.
After about a month, I was unbearable, even to myself. I couldn't stand the person I saw looking back at me, and decided I'd rather have seizures.
I kind of shock myself saying that out loud sometimes, because seizures are pretty much the most horrible thing in the world, right? Well, even Keppra me agreed that the way I was living on this drug was worse than having seizures. So I got off of it after taking it for almost two months.
My doctor prescribed me Lamictal, and I've been taking it ever since. I had a few seizures when I first started Lamictal and a couple when I got the stomach flu, but otherwise it has worked amazingly, and I'm blessed to live a relatively normal (ok, not "normal", but I'm happpy, see :D)life.
The most common side effects of Keppra are drowsiness, dizziness and weakness, which usually resolve in the first month of taking the drug.
Serious side effects are loss of coordination, mental/mood changes (such as irritability, aggression, agitation, anger, anxiety).
http://www.rxlist.com/keppra-drug.htm
Sunday, July 28, 2013
Epilepsy and Pregnancy
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
So, I was reading the other day that parents with JME have about a fifteen percent chance of having children with epilepsy, since JME is so often hereditary. So that got me thinking about epilepsy and pregnancy/having children, in general.
First, let's talk about your AEDs. If your doctor feels like it's an acceptable risk for you to stay on your AED (anti-epileptic drug), which he usually will, he may raise your dose, because of the increase in blood volume during pregnancy, rather than lower it. He may also raise your dose if you are on Lamictal or Keppra, because your body will use more of these two drugs.
On the other hand, if you're taking drugs such as carbamazepine, phenobarbital, phenytoin, primidone or valproate, he may lower your dose, to decrease potential harm to the fetus. These medicines are known to cause congenital birth defects such as spina bifida, cleft lip/palate, and certain heart defects, which could severely lower your baby's quality of life.
Polytherapy (taking more than one drug to control seizures) is NOT recommended during pregnancy, so if you are already taking more than one AED, you may want to see your neurologist immediately if you become pregnant.
More than likely, if you are a woman of childbearing age, you are already on a folic acid supplement. There is evidence that some AED's deplete folic acid levels in your body and that this is the cause of neural tube defects associated with AED's. I was not told why I was on it, which is why I'm saying this, but DO NOT STOP TAKING YOUR FOLIC ACID IF YOU BECOME PREGNANT!!! That's one of the biggest reasons you're on it, along with heart health. If you are not already on it, the folic acid present in a prenatal vitamin may not be enough, and you should talk to your neurologist and a high risk OBGYN to determine if it is necessary to begin supplementation.
Now, let's talk about your seizures. Absence seizures, simple partial seizures, and complex partial seizures during pregnancy typically are not dangerous to a fetus unless you injure yourself, which is rare. Tonic clonics on the other hand, can be very dangerous because of the risk of injury to the abdomen, and the interruption of your breathing. When your baby's developing body is deprived of oxygen during a convulsive seizure, his heart rate can slow for up to thirty minutes after your seizure is over. Repetitive or prolonged convulsive seizures during pregnancy can seriously damage your baby's brain and other organs. Convulsive seizures are most damaging to the baby in the third trimester, when his brain will need more oxygen.
I have some statistics for you:
Most doctors will recommend you breastfeed your baby, as more of your AED reached the baby during pregnancy than is present in breast milk. Ask your neurologist and OBGYN if you have any concerns.
Now lastly, I want to give you some good tips for caring for your baby if your seizures are not completely controlled:
http://www.epilepsysociety.org.uk/AboutEpilepsy/Epilepsyandyou/Pregnancyandparenting-1
http://www.ncbi.nlm.nih.gov/pubmed/22327733
http://www.webmd.com/epilepsy/guide/parenting-concerns-women-epilepsy
So, I was reading the other day that parents with JME have about a fifteen percent chance of having children with epilepsy, since JME is so often hereditary. So that got me thinking about epilepsy and pregnancy/having children, in general.
First, let's talk about your AEDs. If your doctor feels like it's an acceptable risk for you to stay on your AED (anti-epileptic drug), which he usually will, he may raise your dose, because of the increase in blood volume during pregnancy, rather than lower it. He may also raise your dose if you are on Lamictal or Keppra, because your body will use more of these two drugs.
On the other hand, if you're taking drugs such as carbamazepine, phenobarbital, phenytoin, primidone or valproate, he may lower your dose, to decrease potential harm to the fetus. These medicines are known to cause congenital birth defects such as spina bifida, cleft lip/palate, and certain heart defects, which could severely lower your baby's quality of life.
Polytherapy (taking more than one drug to control seizures) is NOT recommended during pregnancy, so if you are already taking more than one AED, you may want to see your neurologist immediately if you become pregnant.
More than likely, if you are a woman of childbearing age, you are already on a folic acid supplement. There is evidence that some AED's deplete folic acid levels in your body and that this is the cause of neural tube defects associated with AED's. I was not told why I was on it, which is why I'm saying this, but DO NOT STOP TAKING YOUR FOLIC ACID IF YOU BECOME PREGNANT!!! That's one of the biggest reasons you're on it, along with heart health. If you are not already on it, the folic acid present in a prenatal vitamin may not be enough, and you should talk to your neurologist and a high risk OBGYN to determine if it is necessary to begin supplementation.
Now, let's talk about your seizures. Absence seizures, simple partial seizures, and complex partial seizures during pregnancy typically are not dangerous to a fetus unless you injure yourself, which is rare. Tonic clonics on the other hand, can be very dangerous because of the risk of injury to the abdomen, and the interruption of your breathing. When your baby's developing body is deprived of oxygen during a convulsive seizure, his heart rate can slow for up to thirty minutes after your seizure is over. Repetitive or prolonged convulsive seizures during pregnancy can seriously damage your baby's brain and other organs. Convulsive seizures are most damaging to the baby in the third trimester, when his brain will need more oxygen.
I have some statistics for you:
- Only 20% of women have an increase in seizure frequency during pregnancy
- You have a 90% or better chance of having a healthy baby; this number is even higher if you plan the pregnancy with your doctor and a high risk OBGYN
- 1-2% of babies born to the general population will have a major birth malformation
- 4-9% of babies born to a mother on AED therapy will have a major birth malformation
Most doctors will recommend you breastfeed your baby, as more of your AED reached the baby during pregnancy than is present in breast milk. Ask your neurologist and OBGYN if you have any concerns.
Now lastly, I want to give you some good tips for caring for your baby if your seizures are not completely controlled:
- Dress and change your baby's diaper on the floor
- Sponge bathe your baby on the floor if no one is around to assist you with bathing
- Carry your baby in a padded sling
- Breastfeed your baby on the floor if possible to minimize falls, or purchase a breast pump and bottle feed on the floor or in a bounce seat.
- Make sure you have a bumbo seat for your baby and feed him/her on the floor once he is eating solid food (a bumbo seat is very sturdy and low to the ground and will not tip if you knock into it during a seizure)
http://www.epilepsysociety.org.uk/AboutEpilepsy/Epilepsyandyou/Pregnancyandparenting-1
http://www.ncbi.nlm.nih.gov/pubmed/22327733
http://www.webmd.com/epilepsy/guide/parenting-concerns-women-epilepsy
Saturday, July 27, 2013
Painfully Familiar
Yesterday was my story, now it's Sammy's turn. Sammy is my thirteen year old sister. The best way to describe Sammy is sunshine. She is the happiest, most amazing girl in the world. She's the light of my life, and I would do anything she asked of me. Sammy has always been a lot like me. Scatter brained, creative, clumsy. But when I was diagnosed with epilepsy, we didn't think much about her being epileptic as well. Back in 2011, Sammy had her first seizure. She was playing video games with our sister Emily, and then Emily said "Sam? Mom, something's wrong with Sam. She's having a seizure!" So of course, after everything with me, my mom ran to me, confused, looked me up and down, looked at Emily, looked at Sam then realized, it was happening all over again. I think for all of us, it was the most sickening feeling we'd ever had. I knew what it was like to wake up in the hospital, realizing what had happened. I knew what it was like to ache all over. I knew what it was like to not have control of my own body. But I'd never had to watch someone I loved so much experience something I knew to be so horrible. I was so angry. Why her? Why my beautiful, innocent, sweet, amazing baby sister? I don't know who I blamed. I knew it wasn't god's fault. It wasn't my fault. But some part of me was just so outraged that she of all people had to experience it.
So Sammy was diagnosed with Juvenile Myoclonic Epilepsy, just like me, and she was put on the same meds as me, and much quicker than I was, thanks to her amazing pediatrician at the time. She only had four seizures total, and luckily she doesn't have postictal psychosis. So with any luck, she can get her drivers license when she's 16, and live a normal life...
We have so much to be thankful for. For me and Sammy, we have each other. I wouldn't wish epilepsy on my worst enemy, but at least she has me, at least I have someone living under the same roof that understands me. Yes, I still live with my mom : / Stop laughing ;)
Epilepsy isn't racist, it isn't sexist, and it doesn't care how wonderful or bright your future is, it's victims are each different and epilepsy is different for all of us. Our experiences are different, but this beast ties us all together.
So Sammy was diagnosed with Juvenile Myoclonic Epilepsy, just like me, and she was put on the same meds as me, and much quicker than I was, thanks to her amazing pediatrician at the time. She only had four seizures total, and luckily she doesn't have postictal psychosis. So with any luck, she can get her drivers license when she's 16, and live a normal life...
We have so much to be thankful for. For me and Sammy, we have each other. I wouldn't wish epilepsy on my worst enemy, but at least she has me, at least I have someone living under the same roof that understands me. Yes, I still live with my mom : / Stop laughing ;)
Epilepsy isn't racist, it isn't sexist, and it doesn't care how wonderful or bright your future is, it's victims are each different and epilepsy is different for all of us. Our experiences are different, but this beast ties us all together.
Thursday, July 25, 2013
Interrupted
First of all, welcome to my new blog! This is just my introduction, however, it's going to be all about life... postictal of course. How to go on after your diagnosis of epilepsy, a wealth of information to arm yourself with when you're faced with people who don't understand, and hopefully a safe haven for those of you who feel alone.
First off though, I want to tell you my story.
When I was sixteen years old, I was diagnosed with hypothyroidism. I didn't think too much of it at the time, because as young as I was, the only thing it was affecting was my weight. So I started taking medicine for it, and I slimmed down significantly.
Afew months after that, I started really struggling in school. My doctor diagnosed me with ADHD. I was put on Strattera. On halloween night, twelve days before my seventeenth birthday, I had my first seizure. I was watching a movie upstairs at my grandparent's house, and my grandfather heard a crash. He ran upstairs to find me having a convulsive seizure. He tried to wake me after, (bad idea) and I can remember him saying my name... I could hear him, but I couldn't see him. My eyes were open, but my sight was gone. I was rushed to the hospital via ambulance, where I didn't recover from my seizure normally. I bit a nurse and kicked a doctor, and they decided to pump my stomach, in case I had overdosed. I hadn't, and after puking charcoal for longer than I care to remember, my tox screen came back negative, and after I don't even know how long of recovery, they sent me home. I don't remember much of the next three weeks.
I was at my dad's house in the town next to mine, and while sitting on the porch, laughing and talking with my him, I had another convulsive seizure. This time I was taken to a different hospital, and again, did not come out of the seizure normally. I was pretty much comatose. The doctors at this hospital told my mom that I was doing it for attention, and that there was nothing physically wrong with me, just psychologically. They suggested my parents have me admitted to the fourth floor of the hospital, the psych ward. My mom refused, and demanded I get transferred to MUSC, the hospital in the city near where we live. I remember waking up in the children's ward in the hospital, but not much else, except for one blaring, vivid, amazing and beautiful moment: when the neurologist looked at my mom and said "Oh, she has post-ictal psychosis." Relief flooded me, and I fell back asleep.
I awoke the next day, my head a little clearer, being carted into a small room with a bunch of computer screens and machines. The EEG specialist explained the procedure to me, and I don't remember much, but the cold hands, a tool scraping my head, and the burn of 10-20 paste against my scalp stands out. A couple days later, the diagnosis was officially in: Juvenile Myoclonic Epilepsy, Psychosis presenting in the postictal state. I spent a few more days there and had a couple more tests run. I was prescribed keppra, I honestly don't remember my dose.
Now keppra, that's a whole other beast. My little sisters call it the frog throwing medicine. Why? Well, that's a story for another pie. Point being, I was mean, nasty and horrible to be around. Evn though my seizures had stopped, they changed my medicine. I was now on Lamictal, 200mg twice a day.
Even though I was still depressed trying to cope with all of this, and not having anyone around me who understood, things got a little better. I was still having seizures about once a month, following my menstrual cycle, which for me, means aboout one normal week a month. But that normal week was a haven for me compared to the way I was before. At least I was remembering things, a little. I had about three more seizures before they just stopped.
I was almost a year seizure free, when I got the stomach flu. And just like that, two seizures back to back. I don't even remember waking from the first one. Since 2010, I haven't had any convulsive seizures. Absence seizures here and there and holy crap the psychic seizures.
This year I was diagnosed with Crohn's Disease, a horrible beastly condition if we want to be nice about it. Although I never like to consider myself disabled, my life has been undeniably interrupted. This is my story, my life, my dedication, and I want to share it all with you.
First off though, I want to tell you my story.
When I was sixteen years old, I was diagnosed with hypothyroidism. I didn't think too much of it at the time, because as young as I was, the only thing it was affecting was my weight. So I started taking medicine for it, and I slimmed down significantly.
Afew months after that, I started really struggling in school. My doctor diagnosed me with ADHD. I was put on Strattera. On halloween night, twelve days before my seventeenth birthday, I had my first seizure. I was watching a movie upstairs at my grandparent's house, and my grandfather heard a crash. He ran upstairs to find me having a convulsive seizure. He tried to wake me after, (bad idea) and I can remember him saying my name... I could hear him, but I couldn't see him. My eyes were open, but my sight was gone. I was rushed to the hospital via ambulance, where I didn't recover from my seizure normally. I bit a nurse and kicked a doctor, and they decided to pump my stomach, in case I had overdosed. I hadn't, and after puking charcoal for longer than I care to remember, my tox screen came back negative, and after I don't even know how long of recovery, they sent me home. I don't remember much of the next three weeks.
I was at my dad's house in the town next to mine, and while sitting on the porch, laughing and talking with my him, I had another convulsive seizure. This time I was taken to a different hospital, and again, did not come out of the seizure normally. I was pretty much comatose. The doctors at this hospital told my mom that I was doing it for attention, and that there was nothing physically wrong with me, just psychologically. They suggested my parents have me admitted to the fourth floor of the hospital, the psych ward. My mom refused, and demanded I get transferred to MUSC, the hospital in the city near where we live. I remember waking up in the children's ward in the hospital, but not much else, except for one blaring, vivid, amazing and beautiful moment: when the neurologist looked at my mom and said "Oh, she has post-ictal psychosis." Relief flooded me, and I fell back asleep.
I awoke the next day, my head a little clearer, being carted into a small room with a bunch of computer screens and machines. The EEG specialist explained the procedure to me, and I don't remember much, but the cold hands, a tool scraping my head, and the burn of 10-20 paste against my scalp stands out. A couple days later, the diagnosis was officially in: Juvenile Myoclonic Epilepsy, Psychosis presenting in the postictal state. I spent a few more days there and had a couple more tests run. I was prescribed keppra, I honestly don't remember my dose.
Now keppra, that's a whole other beast. My little sisters call it the frog throwing medicine. Why? Well, that's a story for another pie. Point being, I was mean, nasty and horrible to be around. Evn though my seizures had stopped, they changed my medicine. I was now on Lamictal, 200mg twice a day.
Even though I was still depressed trying to cope with all of this, and not having anyone around me who understood, things got a little better. I was still having seizures about once a month, following my menstrual cycle, which for me, means aboout one normal week a month. But that normal week was a haven for me compared to the way I was before. At least I was remembering things, a little. I had about three more seizures before they just stopped.
I was almost a year seizure free, when I got the stomach flu. And just like that, two seizures back to back. I don't even remember waking from the first one. Since 2010, I haven't had any convulsive seizures. Absence seizures here and there and holy crap the psychic seizures.
This year I was diagnosed with Crohn's Disease, a horrible beastly condition if we want to be nice about it. Although I never like to consider myself disabled, my life has been undeniably interrupted. This is my story, my life, my dedication, and I want to share it all with you.
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