Please let me warn you,
this post is long, but it is full of useful information. It is long because
there is so much you need to know about seizures and Epilepsy in general. Add
Autism into the mix and there is a huge world out there. I have tried to condense
this information the best I can for you.
It is estimated that one
in every three individuals with Autism Spectrum Disorder also has Epilepsy.
That is a hard hitting fact. One in three individuals with Autism has Epilepsy.
The more I say it the more awestruck I become by that fact. This is not something
any one discussed with me when Aiden was diagnosed. This was not even on my
radar screen as a possibility in his life, until I saw him have a very weird
staring spell one day. This fact is probably the most astounding to people who
do not know much about Autism. What does this mean to parents and caregivers?
How can you tell if your loved one is suffering from a seizure or series of
seizures? How is Epilepsy diagnosed? I'm here to help you find those
answers.
What does this fact mean
to caregivers? I want everyone to be aware of this. This statistic is one of
the first things you should be told as a parent or caregiver, but you are not.
There are two reasons for this. The first is you have just received a critical,
life changing diagnosis. That is hard enough to deal with, so instead of
compounding the issues, it is simply not addressed. The second is to not incite
paranoia. A shiver in the cold is not a seizure, any logical person knows that,
but after receiving this information it may cause some people to overreact and
misinterpret what they are seeing. In reference to this particular instance I
would rather see over reaction than under reaction. Remember not all seizures
are epilepsy. Sounds strange, but I will explain.
What is epilepsy? Epilepsy
is a brain disorder in which nerves or clusters of nerves sometimes fire
abnormally. These misfires cause disruption in the normal brain electric
functioning, resulting in the seizures and muscle spasms you commonly see.
During a seizure the brain neurons may fire as much as 500 times per second,
causing an electrical storm in the brain. Muscle spasms are not the only
symptom. Sometimes an Epilepsy sufferer will have behavioral problems, feel
strange sensations, or have a disruption in their emotions. Epilepsy effects
approximately 50 million people worldwide and according to the Epilepsy
Foundation of Florida three million people in our country suffer with Epilepsy.
Approximately 70-80% of people can control their Epilepsy with medication, in
the remaining population of sufferers surgery is the only method of
intervention. Some children with Epilepsy eat a Ketogenic Diet, for more
information please see your doctor. This does not work with all children and
needs to be regulated by a doctor.
Like Autism, Epilepsy
exists on a sliding scale. Events vary in severity and are individual in
nature. It is important to note that some children will grow out of their Epilepsy. This type of Epilepsy is called
"idiopathic-epilepsy" and is usually age related. This condition
still needs to be monitored and treated by a physician. There are six main
kinds of seizures associated with Epilepsy: tonic, clonic, tonic-clonic,
absence, myoclonic, and atonic.
Tonic: Tonic seizures involve muscle stiffening
alone. The major muscle groups of the body, arms, and legs with suddenly
stiffen. The sufferer will usually stay conscious during the event. Typically
these seizures involve both sides of the brain and are most common during
sleep. The typical tonic seizure will last approximately 20 seconds. For more
information on tonic seizures please visit this link:
Clonic: Clonic seizures will involve a rapid rate
of tightening and relaxing of the muscles, resulting in a jerking movement.
These movements cannot be stopped by restraining the sufferer. This condition
is rare. These seizures last for a few seconds to approximately one minute in length.
For more information see this link:
Tonic-Clonic: These are the most common type of seizure.
Also known as gran mal seizures, these seizures cause muscle stiffening
followed by jerking. The sufferer may lose consciousness during the event. These
events last approximately 1-3 minutes, but a Tonic-Clonic seizure lasting 5
minutes or longer are a medical emergency! For more information on tonic-clonic
seizures please read here:
Absence: These seizures are most common in
children. They involve lapses in awareness and begin and end abruptly.
Sometimes they involve staring. These episodes last only a few seconds and can
go for months undetected. These seizures can happen with other seizures or on
their own. For more information please see this link: https://www.epilepsy.com/learn/types-seizures/absence-seizures
Myclonic: These seizures are brief, jerk of the
muscles, looks like someone is being shocked. This type of seizure will last
just a few seconds and may not repeat since multiple muscles will be affected
all at once. For more information on myclonic seizures please visit this link:
Atonic: These seizures are also known as
"drop attacks" for the sudden loss of muscle tone. The sufferer will
often fall to the ground during an episode, in children only their heads may
drop. This type of seizure only lasts approximately 15 seconds and will begin
in childhood. Many people with this condition are injured when they fall and
some may elect to wear protective helmets. For more information visit this
link:
There are other types of
Epileptic seizures. For more information on Epileptic seizure types please visit
this website: https://www.epilepsy.com/learn/types-seizures
As I mentioned before a seizure does not mean Epilepsy. Seizures are cause for concern and should be diagnosed and treated by a Neurologist. There are four kinds of seizures that are not considered epileptic conditions: first seizures, febrile seizures, non-epileptic events, and eclampsia.
First Seizures: Many people experience at least one seizure over the course of their lives. This is a reaction to anything from medication to an unknown cause. As a universal precaution doctors will order EEG's and testing to ensure the health of an individual who has undergone a seizure. But, first seizure means just that, it was the first seizure. One study followed patients for an average of eight years and found that only 33% will have a second seizure in a span of approximately four years.
Febrile Seizures: These types of seizures will affect children who are sick and run a high fever. In fact the word febrile is Latin for fever. Most children who experience febrile seizures will not develop Epilepsy. In fact there is only a 2-3% chance of developing non-febrile seizures subsequent to a febrile seizure, in an otherwise healthy person.
Non-epileptic Events: Sometimes people will appear to have had a seizure, but their brains will show no signs of seizure activity. This type of seizure may also be known as a pseudo seizure. These events are psychological in origin and may indicate a need for attention, dependence, avoidance of stressful situations, or a psychiatric condition. The people suffering from these events still need help, but not of the medical persuasion. Other non-epileptic events can be caused by conditions like Tourette syndrome, cardiac arrhythmia and other medical conditions. An experienced doctor, through extensive medical testing will be able to assist in diagnosing these medical conditions.
Eclampsia: This is a life threatening condition that may develop in pregnant women. Its symptoms involve sudden, high blood pressure and seizures. This condition needs to be treated in a hospital setting and upon the end of pregnancy the condition disappears. No further seizures will be attributed to this condition as long as the individual is not pregnant.
If left untreated
seizures, over time they can last longer, potentially causing coma or death.
Seizures can sometimes cause brain damage, but this occurs over an extremely
prolonged period of time. An individual suffering from seizures could
experience injuries associated with falling or convulsion trauma. So why are
seizures so under addressed in Autism? It’s a scary thought, but a portion of
the population does not even know their child is suffering from seizures. The
Autism community has named this "Silently Seizing". In fact an Autism
mom, Caren Haines, who is a registered nurse, wrote a book titled just that.
She talks in depth about her experiences and gives some great information about
epilepsy in relation to Autism. In fact she boldly supports the idea that 50%
of Autism diagnosis's can be attributed to silent seizure events. These
seizures can cause Autistic like behavior. So, I believe part of diagnosing
Autism should be tests to rule out seizures as the sole cause for the child's
behavior. It is not because testing is very expensive. Seizures are treatable,
Autism is not curable. Here is a link to Caren Haines's book, Silently Seizing: http://www.silentlyseizing.com/
Was Aiden, my son,
tested for epilepsy? Yes, he was tested in February 2014 due to observations I
have made in his past and an event his grandmother witnessed. His grandmother
is also a nurse. So what did I see? Aiden would be sitting on the floor playing
or watching TV. I would call his name and receive no response for a few
moments. I attributed this to the typical child behavior, zoning into the TV,
until one day when I touch him on the shoulder. Aiden did not respond to his
name or my touch, so I waved my hand in front of his face. He did not react, no
blinking, talking, moving, nothing. I was understandably very concerned, but I
did not know what I was seeing. So I vividly remember quietly sitting down on
the floor next to him. A few seconds later he blinked his eyes and looked
around. He seemed a little confused, but he smiled at me and continued playing.
He was 18 months old when I saw this episode. Confused, I had no idea what it
was, so I watched him closely for a few days and never caught it again until he
was in his two's.
I asked my mother in law
about these events. She informed me it maybe a type of seizure, but she
couldn't be sure. A few months later she called me at work and told me I needed
to get Aiden into a Neurologist. Aiden was at her house for the day. She had
set him up on the computer to watch and listen to some child songs on YouTube.
He was sitting in the chair, fine, actively engaged, when he suddenly fell out
of the chair. He struggled to stand back up and get back into the chair so much
he fell again. This is extremely atypical of Aiden. So we went to a
Neurologist.
The first part of
diagnosing Epilepsy is a visit to the doctor and background information. A 30
minute EEG was conducted in the office to try and catch a seizure episode. This
proved very unproductive. My then two year old did not want to lie completely
still for the 30 minute test. I was not surprised. A video monitored EEG was
ordered. To spare you a very long story, we ended up getting a medical grant
for the test through the United Healthcare Children's Foundation. I am forever
thankful to them for giving us this grant. Without it I would not have been
able to get treatment for Aiden, due to the enormous cost of care.
Be prepared for an EEG,
it is a hard process for you and your child. In fact after the EEG we were
dealing with behavior problems for about a week afterwards. Why so long? My
child was extremely over stimulated by the whole event. This was a necessary
evil for us. To perform an EEG the nurse had to attach electrodes to Aiden's
head. These electrode's measure and read brainwaves and document them on a
graph that reminded me a lot of a heart monitor, but with a lot more lines. To
attach the electrodes, first they had to mark their locations on Aiden's head
and then apply the glue. After the glue is applied the electrodes are pressed
into the glue and tape is applied over the electrodes to help keep them in
place. A net is then placed over the whole shebang to keep the wires under
control. Part of Aiden's Sensory Processing Disorder involves any and
everything touching his head. He hates it and it sends him into an all out fit.
This was a fight and a half for me to hold him down. By the end of the process
we were both exhausted from the fight. Here are some pictures that may help you
understand what the electrodes will look like.
Our EEG and testing came
back with inconclusive results. The doctor cannot tell if Aiden is experiencing
seizures because his brain is not fully finished developing. He explained it to
me like this. They are seeing brain waves that are not typical of someone with
Autism. Autistic individuals have abnormal brainwaves naturally, but these were
strange because these brainwaves were not even typical of an Autistic brain.
Aiden is three and was three at the time of the testing; a human brain does not
finish developing until the child turns four. What the doctor thinks is
happening is a delay of myelin formation on the left side of Aiden's Parietal
Lobe (that's toward the top, back of the head). This part of the brain controls
behaviors, among other things, which could explain why we are seeing such
dramatic issues with meltdowns and behavioral problems, as they occur. If you
think of a power line, there is a coating that protects the wiring on the
lines, think of myelin as that protective coating in the human brain. Without
it the electric signals jump around, uncontrolled, which is what the doctor
believes we were seeing in the form of a possible seizure. Myelin is more
commonly understood in cases involving Multiple Sclerosis, when the body’s
immune system attacks the myelin, eventually causing a slew of health problems.
Myelin forms in the human brain until the child turns four, causing the brain
to double in size from birth to four years of age. Without the completion in
Aiden's brain growth the doctor cannot properly diagnose Aiden's condition. So
we wait.
For more information on
Epilepsy please visit these sites:
For more information on
Childhood Epilepsy please visit this site:
For more information on
Epilepsy and Autism here is a good reference:
http://www.autismspeaks.org/family-services/epilepsy
Video about seizure first aid: http://www.doctoroz.com/videos/seizure-first-aid
Video about seizure first aid: http://www.doctoroz.com/videos/seizure-first-aid
I hope this has given
you not only insight into Epilepsy, but also how Epilepsy and Autism can co-exist.
Please seek the guidance and diagnosis of a medical professional if you suspect
seizures or Epilepsy in your loved one.
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