Children receive a bead from @beadsofcourage to represent their medical journey, a bead for needle pokes, medical testing, nights spent in hospital, ambulance rides, etc. Lochlan currently has over 30ft of beads, with 100 more on the way. He truly is our little superhero!
This campaign holds a special place to all of us at Onyx+Ivy as my son Lochlan was diagnosed with epilepsy just before turning 3 months old. When Lochlan was diagnosed in March 2018, and in hospital for the second time in April 2018 due to a devastating seizure, we had an amazing community come together to support our family during this incredibly difficult time. Jess and I became best friends instantly as she was a vital support person for me, as well as the other wonderful girls who live on my street.
Three years later Lochlan lives with refractory epilepsy, which is just a fancy way of saying medication resistant seizures. He has developed more symptoms along his journey leaving his neurological team to dig deeper into the cause. Although we have no answers YET we are truly humbled by the continued dedication of his medical team.
Raising money for the pediatric neurology clinic means that further research can be done to discover treatment options for children like Lochlan. Not only do uncontrolled seizures effect his quality of life, they increase his risk of SUDEP (sudden death in epilepsy). As his Momma bear I have vowed from the beginning to fight as hard as I can to better his quality of life and advocate for a world that's more understanding and inclusive.
What is Epilepsy?
Epilepsy is the fourth most common neurological disorder and affects people of all ages.
Epilepsy means the same thing as "seizure disorders."
Epilepsy is characterized by unpredictable seizures and can cause other health problems.
Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person.
Public misunderstandings of epilepsy cause challenges that are often worse than the seizures.
Seizures can take on many different forms, and seizures affect different people in different ways. Anything that the brain does normally can also occur during a seizure when the brain is activated by seizure discharges. Some people call this activity “electrical storms” in the brain.
Seizures have a beginning, middle, and end. Not all parts of a seizure may be visible or easy to separate from each other. Every person with seizures will not have every stage or symptom described below. The symptoms during a seizure usually are stereotypic (occur the same way or similar each time), episodic (come and go), and may be unpredictable.
Some people are aware of the beginning of a seizure, possibly as much as hours or days before it happens. On the other hand, some people may not be aware of the beginning and therefore have no warning.
Some people may experience feelings, sensations, or changes in behavior hours or days before a seizure. These feelings are generally not part of the seizure, but may warn a person that a seizure may come. Not everyone has these signs, but if they do, the signs can help a person change their activity, make sure to take their medication, use a rescue treatment, and take steps to prevent injury.
An aura or warning is the first symptom of a seizure and is considered part of the seizure. Often the aura is an indescribable feeling. Other times it’s easy to recognize and may be a change in feeling, sensation, thought, or behavior that is similar each time a seizure occurs.
The aura can also occur alone and may be called a focal onset aware seizure, simple partial seizure or partial seizure without change in awareness.
An aura can occur before a change in awareness or consciousness.
Yet, many people have no aura or warning; the seizure starts with a loss of consciousness or awareness.
Common Symptoms Before A Seizure
Awareness, Sensory, Emotional or Thought Changes:
Déjà vu (a feeling that a person, place or thing is familiar, but you've never experienced it before)
Jamais vu (feeling that a person, place or thing is new or unfamiliar, but it's not)
Visual loss or blurring
Fear/panic (often negative or scary feelings)
Dizzy or lightheaded
Nausea or other stomach feelings (often a rising feeling from the stomach to the throat)
Numbness or tingling in part of the body
The middle of a seizure is often called the ictal phase. It’s the period of time from the first symptoms (including an aura) to the end of the seizure activity, This correlates with the electrical seizure activity in the brain. Sometimes the visible symptoms last longer than the seizure activity on an EEG. This is because some of the visible symptoms may be aftereffects of a seizure or not related to seizure activity at all.
Common Symptoms During A Seizure
Awareness, Sensory, Emotional or Thought Changes
Loss of awareness (often called “black out”)
Confused, feeling spacey
Periods of forgetfulness or memory lapses
Loss of consciousness, unconscious, or “pass out”
Unable to hear
Sounds may be strange or different
Unusual smells (often bad smells like burning rubber)
Loss of vision or unable to see
Formed visual hallucinations (objects or things are seen that aren’t really there)
Numbness, tingling, or electric shock like feeling in body, arm or leg
Out of body sensations
Déjà vu or jamais vu
Body parts feels or looks different
Feeling of panic, fear, impending doom (intense feeling that something bad is going to happen)
Difficulty talking (may stop talking, make nonsense or garbled sounds, keep talking or speech may not make sense)
Unable to swallow, drooling
Repeated blinking of eyes, eyes may move to one side or look upward, or staring
Lack of movement or muscle tone (unable to move, loss of tone in neck and head may drop forward, loss of muscle tone in body and person may slump or fall forward)
Tremors, twitching or jerking movements (may occur on one or both sides of face, arms, legs or whole body; may start in one area then spread to other areas or stay in one place)
Rigid or tense muscles (part of the body or whole body may feel very tight or tense and if standing, may fall “like a tree trunk”)
Repeated non-purposeful movements, called automatisms, involve the face, arms or legs, such as
lip-smacking or chewing movements
repeated movements of hands, like wringing, playing with buttons or objects in hands, waving
dressing or undressing
walking or running
Repeated purposeful movements (person may continue activity that was going on before the seizure)
Convulsion (person loses consciousness, body becomes rigid or tense, then fast jerking movements occur)
Losing control of urine or stool unexpectedly
Change in skin color (looks pale or flushed)
Pupils may dilate or appear larger than normal
Biting of tongue (from teeth clenching when muscles tighten)
As the seizure ends, the postictal phase occurs - this is the recovery period after the seizure. Some people recover immediately while others may take minutes to hours to feel like their usual self. The type of seizure, as well as what part of the brain the seizure impacts, affects the recovery period – how long it may last and what may occur during it.
Common Symptoms After A Seizure
Awareness, Sensory, Emotional, or Thought Changes
Slow to respond or not able to respond right away
Difficulty talking or writing
Feeling fuzzy, lightheaded, or dizzy
Feeling depressed, sad, upset
Frustrated, embarrassed, ashamed
May have injuries, such as bruising, cuts, broken bones, or head injury if fell during seizure
May feel tired, exhausted, or sleep for minutes or hours
Headache or other pain
Nausea or upset stomach
General weakness or weak in one part or side of the body
Urge to go to the bathroom or lose control of bowel or bladder
You Are Not Alone. If you or someone you know has seizures and any of the symptoms listed about, know that you are not alone.
Diversify your home library - educating our children is key to a more inclusive culture
Raising money in honor of Mr. Lochy B gives me incredible joy, and we look forward to sharing some more of our journey with epilepsy. Thank you for taking the time to listen + learn with me!