Whether your child was just diagnosed, or your family has been suffering for years, Epilepsy is a brain disorder that can leave parents feeling powerless and out of control.
According to the CDC (2015 report), 470,000 children ages 17 and under have active epilepsy. It is one of the most common nervous disorders, according to health experts. Because the disease is receiving more attention from the medical field in recent years, there are many resources and expert care teams across the entire country.
So wherever you find yourself on this journey, you’re not alone. Keep reading for our team’s guide to understanding your child’s journey with epilepsy.
- Epilepsy is a brain disorder resulting in recurring seizures. The American Academy of Pediatrics (AAP) maintains that these seizures are triggered by changes in electrical and chemical activity in the brain.
- Epilepsy is not contagious, though it may be genetically inherited.
- If an epileptic episode lasts longer than 5 minutes, or the child has been diagnosed with diabetes and is convulsing, this is an emergency. Call 911.
- Most people with epilepsy can live independent, successful adult lives.
Types of Seizures
There are two main types of seizures, described in detail below:
- Focal Seizures: located in just one part of the brain, also called partial seizures.
- Simple focal seizures: impact a small part of the brain; cause twitching or change in sensation, such as a strange taste or smell for the epileptic; most often affects a single muscle group, so a child is unlikely to lose consciousness.
- Complex focal seizures: often occurs in the portion of the brain that is responsible for emotion and memory function (temporal lobe); the child will often lose consciousness, though he or she may not pass out; the child may begin to gag, smack lips, run, scream, cry or laugh.
- Generalized Seizures: affecting both sides of the brain.
- Absence seizures: sometimes referred to as petit mal seizures; cause rapid blinking or staring into space for no longer than 30 seconds; the child may be completely unaware of the occurrence and go about his or her activities; Absence seizures most often start between the ages of 4 and 12.
- Tonic-clonic seizures: also called grand mal seizures; cause a person to cry out, lose consciousness, fall to the ground, and have muscle spasms.
First Aid During a Grand Mal Seizure
When your child begins to have a generalized tonic-clonic seizure, it can be upsetting and frightening. Do not panic. The best thing you can do is keep your child safe with these first aid tips.
- Move anything that could hurt or fall on the child
- Loosen/remove anything around the child’s neck
- Find something soft and flat for the child’s head (a jacket, blanket, or pillow)
- Position the child on his or her side, to prevent choking
- Time the seizure and make note of details to relay to your doctor
- Stay calm, and be ready to comfort the child afterward
- Do not attempt to hold the child during the seizure
- Do not open or put anything in the mouth
- Do not try to stop any movements, including tongue biting
What causes seizures? According to John Hopkins Medicine and the AAP, the short answer: There is no umbrella cause for epilepsy, but suspected origins can be found below.
- An imbalance of neurotransmitters
- Brain tumor
- Brain damage from illness or injury
- Brain development problems in utero
Any underlying conditions or concerns should be addressed and discussed in full with your child’s medical team.
Though symptoms differ depending on the type of seizure, general seizure warning signs are as follows:
- Jerking movements of the arms and legs
- Body stiffening
- Loss of consciousness
- Loss of bowel or bladder control
- Falling suddenly for no apparent reason, especially when associated with loss of consciousness
- Not responding to noise or words for brief periods
- Appearing confused or in a haze
- Nodding head rhythmically, when associated with loss of awareness or consciousness
- Periods of rapid eye blinking and staring
Additionally, be aware that your child’s lips may turn blue and breathing may be abnormal during an epileptic episode. When the seizure has concluded, he or she may be sleepy or confused.
Keeping in mind that every child’s diagnostic process will differ depending on a myriad of factors, here are some elements you should expect and be prepared for when discussing an epilepsy diagnosis with your healthcare provider:
- Detailed Medical History: Your doctor may have a list of questions, including inquiries about the mother’s health, pregnancy, and delivery, any relatives with related or noteworthy conditions, and if the child is exhibiting any epileptic symptoms.
- Account of Seizure(s): Any parties present when the incident(s) occurred should be prepared to describe the seizure.
- Physical Examination: The child’s overall health will be measured, including cardiac, neurological, and mental status.
- Imagining Tests: The brain may be scanned using an MRI or CAT (aka CT scanner).
- Electroencephalogram (EEG): Can be utilized by a medical team to determine electrical activity in the child’s brain, including the risk of seizure recurrence.
A doctor is likely to diagnose a child with epilepsy if the following are true:
- Child has had one or more seizures for an unknown reason
- It is deemed likely that the child will have a seizure again
- Child’s seizures can’t be explained by another medical condition
The goal of treatment for epilepsy is to reduce the severity and recurrence of seizure events. This usually begins with medication, however, there is no “right way” to treat epilepsy, since every child and condition is different.
Seizure-prevention drugs are called anti-epilepsy drugs (AEDs) or anticonvulsant drugs. It may take your medical team some time to find the right one for your child’s unique situation. Once a medication regimen is established, it is important to maintain your doctor’s instructions and directions for use in order to experience the benefits.
Other treatments, depending on the severity of the child’s epilepsy, are:
- Brain surgery
- Medical devices implanted to control and prevent future seizures
- Diet therapy (talk to your doctor about the effectiveness of the Keto diet, the modified Atkins diet, and the Low Glycemic Index Treatment for your child’s condition)
Epilepsy can feel like an unknown, scary disorder, especially for little ones and their parents/guardians. Supporting your child and taking care of yourself is of the utmost importance. Connect yourself to resources in your area and make a habit of encouraging your child in practical ways as you make sense of this diagnosis together.
Support Your Child
- Learn as much as you can about your child’s diagnosis using resources like the Epilepsy Foundation
- Discuss epilepsy openly with your child, and teach your child to do the same with their peers, teachers, relatives, and others
- Empower your child to make friends
- Continue family activities and traditions
- Avoid saying anything that could make your child feel like a burden or guilty for their condition
- Establish sustainable rhythms and routines
- Involve your child in keeping track of their medications
- Keep an open line of communication with your child’s medical team
- Make sure your child is getting adequate sleep and nutrition
- Consult your doctor about the efficacy of including a Service Animal in your child’s treatment and care program
Take Care of Yourself
- Find a parent support system in your area (utilizing social media and direction from your medical team for help locating a group)
- Establish a self-care routine to avoid “caregiver burnout”
- Build a support network using available resources for parents with Special Needs Children: Parent to Parent USA, your local Epilepsy Foundation, the Center for Parent Information and Resources, Family Voices, and the Mayo Clinic in your area
- Ask lots of questions and communicate with your medical team
- Remember that you are a superhero!
You Don’t Have to Do it Alone
If you find yourself overwhelmed by the realities of caring for your child with epilepsy, you don’t have to do it alone. Evergreen Home Healthcare is proud to offer families with children who have medically complex conditions an array of services to fit their needs.
We specialize in compassionate, in-home pediatric care to whatever degree and level of involvement your family needs to remain independent and confident.
Let us assist you in building a support system and team of medical professionals to empower you and your child and encourage sustainable caregiving. Epilepsy doesn’t have to be overwhelming; Evergreen will be with you every step of the way. Reach out today!