I came across a blog post yesterday about epilepsy in autism. Since my son Cody has both, it really caught my attention. Click here if you would like to read about the study.
Since we are talking about seizures, the following are posts on my blog that may be of interest:
First Aid for Seizures
What is SUDEP?
Autism and Vitamins
Today I Cry
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Saturday, October 8, 2011
Wednesday, July 20, 2011
I May Never Be an Empty Nester
The following post was written by Rick Law, an attorney who deals with estate planning, medicaid assistance and disability law.
"My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.
Not everyone becomes an empty-nester. And although we sometimes joke about the child who 'failed to launch' due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled."
When I read the last sentence of this article, I cried.
I cried because I was led to believe by medical "professionals" that my son wouldn't live long.
I cried because somewhere in my heart I held hope that one day I would have a somewhat "normal" life.
I cried because I don't want to continue sleeping with a baby monitor in case Cody has a seizure during the night.
I cried because my friends are all becoming the aforementioned "empty nesters" and I'm still dealing with a child who is completely dependent on me.
I cried because Cody realized I was crying and, being the sweet spirit that he is, said "Are you doing okay? I hate it when you have a cold."
I cried because I feel guilty for thinking selfishly.
Tomorrow is Cody's 30th birthday. Tomorrow I will be cheerful and focus on the blessing Cody has been in my life.
But today, I cry.
To read Rick's article in its entirety, click on the following link...
83 Years Old and Never an Empty-Nester
"My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.
Not everyone becomes an empty-nester. And although we sometimes joke about the child who 'failed to launch' due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled."
When I read the last sentence of this article, I cried.
I cried because I was led to believe by medical "professionals" that my son wouldn't live long.
I cried because somewhere in my heart I held hope that one day I would have a somewhat "normal" life.
I cried because I don't want to continue sleeping with a baby monitor in case Cody has a seizure during the night.
I cried because my friends are all becoming the aforementioned "empty nesters" and I'm still dealing with a child who is completely dependent on me.
I cried because Cody realized I was crying and, being the sweet spirit that he is, said "Are you doing okay? I hate it when you have a cold."
I cried because I feel guilty for thinking selfishly.
Tomorrow is Cody's 30th birthday. Tomorrow I will be cheerful and focus on the blessing Cody has been in my life.
But today, I cry.
To read Rick's article in its entirety, click on the following link...
83 Years Old and Never an Empty-Nester
Wednesday, April 6, 2011
'Autism and Vitamins' Repost at Autism Blogs Directory
Autism Blogs Directory: Guest Post DeeAnn from Snippets 'N Stuff: "Autism and Vitamins When families have a child with Autism, they want to do everything they can to help them. Fo..."
Monday, November 8, 2010
Are You Seizure Smart?
November is Epilepsy Awareness Month. Epilepsy, also known as Seizure Disorder, can affect anybody at any age. Please click on the following link to see how seizure smart you are.
Epilepsy Foundation-National Epilepsy Awareness Month
Epilepsy Foundation-National Epilepsy Awareness Month
Sunday, September 5, 2010
What is SUDEP?
SUDEP is: Sudden Unexplained Death in Epilepsy
It is generally defined as a "uncommon and non-traumatic death that occurs suddenly and unexpectedly in patients with epilepsy who otherwise were previously healthy".
It is without any obvious clinical or pathological explanations; in many cases, the patients are found lying in bed (as if they have just stopped breathing during sleep) or on the floor with no evidence of a seizure having occurred. For this reason, it is VERY IMPORTANT that this be kept in mind anytime someone who was "previously healthy" dies.
How Common Is It?
SUDEP accounts for 10% of all epilepsy-related deaths; 85% of these fatalities occur between the ages of 20-50 years.
The incidence of SUDEP stands at approximately 1 in 1000 people with epilepsy per year, which is at least 10 times the sudden death rate found in the general population.
What that means is, if you have a diagnosis of epilepsy, you are TEN TIMES more likely to have "Sudden Death".
What Are the Suspected Causes?
Possibilities include:
An irreversible cardiac arrest (heart attack); according to one theory, electrical discharges in the brain may change the electrical status of the heart, affecting its rhythm. (SUDEP has been witnessed in hospital and Emergency Departments where doctors on the scene were unable to resuscitate the patient.)
Respiratory arrest; breathing stopped by a seizure which is generally described as a generalized tonic-clonic convulsion
What are the Risk Factors of SUDEP?
People with refractory (uncontrolled or poorly controlled) epilepsy
People with severe epilepsy and learning difficulties
Young patients with a long history of generalized tonic-clonic seizures
Having at least a 2-year history of epilepsy
People who take 2 or more anti-epileptic drugs (especially if combined with psychiatric agents)
Poor compliance with anti-epileptic medications (Autopsies reveal that, at the time of death, 50% of affected patients had blood concentrations either below therapeutic levels or in completely undetectable amounts.)
Alcohol abuse (definite links found)
Alone during seizure
Can Any Precautionary Measures Prevent SUDEP?
Controlling seizures seems to be the most important thing, however, a very few people have not survived their very FIRST seizure so PREVENTION is important.
Keep appointments so your doctor can monitor any changes, and adjust your medications accordingly
Take medications for seizures regularly
Avoid sudden drug withdrawal, or dosage changes
Adopt a healthy lifestyle:
Maintain regular and adequate sleep patterns
Exercise regularly
Eat regular, nutritious meals
Learn to cope with stress
Avoid alcohol and street drugs
Always stay with company so that someone can help during seizure
Nocturnal Seizures - Seizures occurring during sleep have a higher incidence of SUDEP. Preventive measures might include having the bed near the floor, changing from a feather to a solid foam pillow (which may reduce the possibility of suffocation), and having a monitor to alert others in the home when a seizure occurs.
The aforementioned can be found at http://www.epilepsy.uhhs.com/sudep.htm
It is generally defined as a "uncommon and non-traumatic death that occurs suddenly and unexpectedly in patients with epilepsy who otherwise were previously healthy".
It is without any obvious clinical or pathological explanations; in many cases, the patients are found lying in bed (as if they have just stopped breathing during sleep) or on the floor with no evidence of a seizure having occurred. For this reason, it is VERY IMPORTANT that this be kept in mind anytime someone who was "previously healthy" dies.
How Common Is It?
SUDEP accounts for 10% of all epilepsy-related deaths; 85% of these fatalities occur between the ages of 20-50 years.
The incidence of SUDEP stands at approximately 1 in 1000 people with epilepsy per year, which is at least 10 times the sudden death rate found in the general population.
What that means is, if you have a diagnosis of epilepsy, you are TEN TIMES more likely to have "Sudden Death".
What Are the Suspected Causes?
Possibilities include:
An irreversible cardiac arrest (heart attack); according to one theory, electrical discharges in the brain may change the electrical status of the heart, affecting its rhythm. (SUDEP has been witnessed in hospital and Emergency Departments where doctors on the scene were unable to resuscitate the patient.)
Respiratory arrest; breathing stopped by a seizure which is generally described as a generalized tonic-clonic convulsion
What are the Risk Factors of SUDEP?
People with refractory (uncontrolled or poorly controlled) epilepsy
People with severe epilepsy and learning difficulties
Young patients with a long history of generalized tonic-clonic seizures
Having at least a 2-year history of epilepsy
People who take 2 or more anti-epileptic drugs (especially if combined with psychiatric agents)
Poor compliance with anti-epileptic medications (Autopsies reveal that, at the time of death, 50% of affected patients had blood concentrations either below therapeutic levels or in completely undetectable amounts.)
Alcohol abuse (definite links found)
Alone during seizure
Can Any Precautionary Measures Prevent SUDEP?
Controlling seizures seems to be the most important thing, however, a very few people have not survived their very FIRST seizure so PREVENTION is important.
Keep appointments so your doctor can monitor any changes, and adjust your medications accordingly
Take medications for seizures regularly
Avoid sudden drug withdrawal, or dosage changes
Adopt a healthy lifestyle:
Maintain regular and adequate sleep patterns
Exercise regularly
Eat regular, nutritious meals
Learn to cope with stress
Avoid alcohol and street drugs
Always stay with company so that someone can help during seizure
Nocturnal Seizures - Seizures occurring during sleep have a higher incidence of SUDEP. Preventive measures might include having the bed near the floor, changing from a feather to a solid foam pillow (which may reduce the possibility of suffocation), and having a monitor to alert others in the home when a seizure occurs.
The aforementioned can be found at http://www.epilepsy.uhhs.com/sudep.htm
Saturday, September 4, 2010
First Aid for Seizures
Tonic-Clonic seizures
The person goes stiff, loses consciousness and then falls to the ground. This is followed by jerking movements. A blue tinge around the mouth is likely. This is due to irregular breathing. Loss of bladder and/or bowel control may happen. After a minute or two the jerking movements should stop and consciousness may slowly return.
Do...
•Protect the person from injury - (remove harmful objects from nearby)
•Cushion their head
•Look for an epilepsy identity card or identity jewellery
•Aid breathing by gently placing them in the recovery position once the seizure has finished
•Stay with the person until recovery is complete
•Be calmly reassuring
Don't...
•Restrain the person’s movements
•Put anything in the person’s mouth
•Try to move them unless they are in danger
•Give them anything to eat or drink until they are fully recovered
•Attempt to bring them round
Call for an ambulance if...
•You know it is the person’s first seizure
•The seizure continues for more than five minutes
•One tonic-clonic seizure follows another without the person regaining consciousness between seizures
•The person is injured during the seizure
•You believe the person needs urgent medical attention
Complex partial seizures
Do...
•Guide the person from danger
•Stay with the person until recovery is complete
•Be calmly reassuring
•Explain anything that they may have missed
Don't...
•Restrain the person
•Act in a way that could frighten them, such as making abrupt movements or shouting at them
•Assume the person is aware of what is happening, or what has happened
•Give the person anything to eat or drink until they are fully recovered
•Attempt to bring them round
Call for an ambulance if...
•You know it is the person's first seizure
•The seizure continues for more than five minutes
•The person is injured during the seizure
•You believe the person needs urgent medical attention
The information in this blog post was taken from http://www.epilepsy.org.uk/info/firstaid.html#tonicclonic
Wednesday, June 23, 2010
Autism and Vitamins
When families have a child with Autism, they want to do everything they can to help them. For this reason, I want to share this particular experience...
I had seen Jenny Mcarthy and Holly Robinson Pete on television and various magazines, talking about their Autistic children. I was impressed with the amount of research they each had done on the disability and I began thinking that maybe I should educate myself more on the subject.
Somewhere along the line, I came across material that talked about people with Autism having vitamin deficiencies. I searched it out and found a pharmacy on the Internet that would custom make vitamins according to a particular ailment or disability. I ordered the vitamins and gave them to my son every morning.
A few weeks later, he had a seizure; then a few weeks later, another. My family and I tried to figure out why this was happening. He hadn't had a seizure for years! All we could think of that he was doing differently was taking the vitamins. Immediately we stopped; then we did some more research. We learned that a particular vitamin in the multi capsule we were giving him would make the drug that he was taking for seizure control ineffective.
I wish to make other parents aware that this could be a problem for them as well. Please seek advice from your child's physician before you give him/her something that sounds even as harmless as a vitamin.
I had seen Jenny Mcarthy and Holly Robinson Pete on television and various magazines, talking about their Autistic children. I was impressed with the amount of research they each had done on the disability and I began thinking that maybe I should educate myself more on the subject.
Somewhere along the line, I came across material that talked about people with Autism having vitamin deficiencies. I searched it out and found a pharmacy on the Internet that would custom make vitamins according to a particular ailment or disability. I ordered the vitamins and gave them to my son every morning.
A few weeks later, he had a seizure; then a few weeks later, another. My family and I tried to figure out why this was happening. He hadn't had a seizure for years! All we could think of that he was doing differently was taking the vitamins. Immediately we stopped; then we did some more research. We learned that a particular vitamin in the multi capsule we were giving him would make the drug that he was taking for seizure control ineffective.
I wish to make other parents aware that this could be a problem for them as well. Please seek advice from your child's physician before you give him/her something that sounds even as harmless as a vitamin.
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