Children with epilepsy face challenges
by
Heather WoolwinePublic Relations
The following article is the second in a series highlighting national epilepsy awareness efforts on behalf of the national Epilepsy Foundation and MUSC. This article details issues specifically faced by children who have epilepsy.
From a parent’s perspective, the desire to have a healthy, happy, secure child is no less than the instinct to protect that child in the face of harm or danger. For a child, fitting in with peers, the freedom to be oneself without repercussion, and the need to learn, accomplish, and please others are paramount goals of life.
For children with epilepsy and their parents, these needs become complicated by a condition stigmatized for centuries and one which health care professionals still struggle to understand.
“Children’s Issues in Epilepsy”
6:30 to 9 p.m., Sept. 28, Harper Student Wellness Center Auditorium
Parking: Charleston County Parking Garage behind Charleston Memorial Hospital or MUSC Parking Garage behind College of Nursing on Jonathan Lucas Street. Participants are responsible for parking fees.
Registration: Contact Pediatric Neurology, 792-3307, to register for this free event.
According to Gigi Smith, a certified pediatric nurse practitioner in the MUSC Pediatric Neurology clinic, epilepsy occurs in about 1 percent to 2 percent of the U.S. population. For about one-third of that population, the cause of epilepsy is known, leaving many people without an answer to the most basic question, “why?”
Lee Lineberry, from
left, Pam Ferguson, Kelly Cavins, Kelly Barnwell, Gigi Smith, and
Janelle Wagner share information on S.C. Hope and the Epilepsy
Foundation during a RiverDogs game.“In general, children with epilepsy do very well, but at MUSC we see children who have a more difficult to control type of epilepsy. Many times they can have other brain issues, like learning problems, social issues, and anxiety or depression which are common co morbidities of epilepsy,” Smith said.
While common sense may dictate that there are differences in how adults and children manifest the symptoms of epilepsy as well as how they respond to various treatments for epilepsy, what may come as a surprise to some people is the lack of literature concerning quality of life aspects for people with the condition, especially children. Traditionally, parent report and self-report for those old enough to understand their condition have served the medical community in treating children with epilepsy.
At MUSC, three studies involving children with epilepsy may shed more light on a fairly dark subject. The first study, SC HOPE, is a Centers for Disease Control and Prevention-sponsored epidemiological study based in the Department of Biostatistics, Bioinformatics & Epidemiology, and spearheaded by Anbesaw Selassie, Dr.PH. A component of this study will examine health related outcomes for children with epilepsy.
The other two studies were funded through grants from the Epilepsy Foundation (EF) and Parents Against Childhood Epilepsy (PACE). For the EF study, Janelle Wagner, Ph.D., Pediatrics, and Smith will learn more about hopelessness, self-efficacy for seizure management, and attitudes toward epilepsy in children with epilepsy, age 10 to 17, who have otherwise normal cognitive functioning. From these reports, Wagner and Smith hope to gain a better understanding of how children with epilepsy perceive themselves and their lifestyle.
The PACE project is a pilot study that will examine a cognitive behavioral intervention designed to teach coping skills that promote empowerment in children with epilepsy, as well as their parents.
If you are 11 years old or older with epilepsy and you or your family would like information about the SC HOPE study, call 1-866-313-9973.
Epilepsy: What it is, how it’s treated, and why it happens
The two main categories for epilepsy are generalized, which involves the entire brain, and partial which involves a particular place in the brain.
For those who develop generalized epilepsy, their seizures may consist of various movements including flailing, stiffness, shaking, and/or falling to the ground during a seizure that are the most easily identified symptom by the public.
Partial epilepsy is further subdivided into two groups: simple and complex. For people with simple partial epilepsy, they do not lose consciousness during a seizure and may exhibit rhythmic jerks in the hands; they may lose sense of smell; they may have difficulty speaking; or other various responses depending on the location of the abnormal electrical firing in the brain.
On the contrary, people with complex partial epilepsy experience loss of consciousness paired with, for example, a rhythmic motion with the hands. They may hear what is going on around them but are unable to respond or make sounds that are not easily understood.
No matter what type of seizure a person seems to be having, however, it is important to remain vigilant and record all the symptoms manifested to help the epilepsy team treat the patient to the best of their ability.
The following first aid tips should help care for someone who might be undergoing a seizure:
- Make sure the person is comfortable. Place something soft under his or her head like a jacket.
- Give the person space to have the seizure by removing sharp objects or furniture.
- Check to see if the person is wearing a medical identification/alert bracelet or necklace.
- Time the seizure. If you don’t know if the person has ever had a seizure before or if a seizure lasts longer than five minutes, call an ambulance.
- Loosen any tight clothing, i.e., a man’s tie.
- At the conclusion, make sure the person is in the recovery position on his or her side in case of vomiting.
Dealing with AEDs can also become tough when younger children must take them and then aren’t able to articulate possible side effects which may be bothering them. AEDs currently on the market have reasonable success in most children, but research funding for newer medications, other types of treatments, and most importantly, a cure for epilepsy continue to be scarce. In the mean time, children with epilepsy “live life as if on a stage floor built with trap doors, never knowing when the next one will pop open and they will fall through,” Turner said.
One of the biggest discoveries in the 1990s was the effect that vagus nerve stimulation (VNS) can have on adults and children with epilepsy. “VNS feeds into a sense of empowerment because it allows the parent or child to activate the device right before or during a seizure to hopefully gain control of it, but like any treatment for epilepsy, it works in some people and not others,” Turner said.
At this time, MUSC Children’s Hospital has implanted more than 120 VNS devices in pediatric patients, placing Turner and his colleagues among the top epilepsy centers in the country for pediatric VNS implants.
In terms of diet treatments, the ketogenic diet is sometimes recommended for select children who experience numerous seizures per day. A high fat, low carbohydrate and protein diet has anticonvulsant properties, causing the brain to switch from glucose (sugar) to ketones as its energy source. Children and their families must withstand limited food and fluid intake and remain committed to the diet. The diet may allow for decreased doses or withdrawal of antiseizure medications.
Dissection refers to surgeries performed to try and control or stop seizures, the most popular at this time being the VNS implant and specific neurosurgical resections of areas of the brain responsible for the seizures, yet which won’t cause the patient undue deficits. Last, Turner’s “drug store” refers to highly specific and specialized treatments made on a case by case basis, for example, treating a patient with increased select vitamin supplement intake, steroids, or immunotherapies.
The “why” of epilepsy at this point is one of the most frustrating questions to answer, because for 70 percent of people who suffer from it, the answer to the question is unknown.
“This makes it very hard for parents and some children to accept the diagnosis and to predict what lies ahead,” Wagner said. “Parents wonder if their child will grow out of the seizure condition or if they could have done something differently in the child’s life. There’s a lot of uncertainty and the outcomes are highly varied for each child. This experience creates a major challenge for families to overcome, and often parallels the intractability of seizures.”
Genetic and other basic science researchers are tasked with finding answers so that better treatment and hopefully a cure can become available in the future. Turner mentioned other research work being conducted, although still far from clinical application here, that is seeking to develop more methods for directed auditory/musical or electrical stimulation, including deep brain stimulation (DBS). With DBS, seizures would be perceived at a cellular level and an electrical impulse could stop them before they start. In the meantime, Turner and his colleagues continue to do their utmost to help children and their families in the comprehensive management of seizures and epilepsy. The ultimate goal of the epilepsy treatment team and the EF’s “Living Well with Epilepsy” report are no side effects to treatments and no seizures for people with epilepsy.
What parents and families should know about epilepsy
According to Wagner, there is a three to six-fold increase in children with epilepsy in terms of the chance for developing psychological symptoms such as depression, anxiety, and disruptive behaviors in addition to neurocognitive limitations that can influence how they function at home, in social situations, and at school.
Turner also noted the impact of improper sleeping schedules or sleep deprivation in children with epilepsy. “A good rule of thumb is the ‘10 hours at 10 years rule,’” he said. “Children at age 10 should get about 10 hours of sleep nightly. Those younger than 10 need cumulatively more sleep, and older children vice versa. Children who don’t have epilepsy can manifest symptoms related to sleep deprivation that look like ADHD, behavioral changes, or academic difficulties, or in children who have reached puberty, extreme tiredness. It’s very important that children with epilepsy, especially, receive enough sleep each night.”
As with many conditions, what’s going on inside the body interacts with what goes on outside of it. Epilepsy involves the central nervous system, meaning it’s a brain based condition. The brain, in turn, is responsible for processing outside stimuli and cues to help the person function in their given environment. Parents and families of children with epilepsy should pay close attention to how they interact with those children to monitor social, academic, and behavioral functioning.
“It’s important to treat and control the seizures, but it’s just as important to pay attention to a child’s social life, behavior, and school functioning. Children with epilepsy should receive neuropsychological assessment to inform educational programming. If behavior problems or psychological symptoms arise, children should be referred to a mental health professional (psychiatrist, psychologist, or social worker). Unfortunately, recent evidence suggests that only 20 percent to 30 percent of children with epilepsy who have mental health or other psychological problems actually get mental health services,” Wagner said. “There is a need for us to increase parents’ and medical providers’ understanding of and access to mental health services for children with epilepsy.”
Wagner also noted an increasing momentum in the study of mood-related disorders in children with epilepsy that is slowly illuminating the prevalence of behavior and mental health issues in these children through brain imaging. To put it simply, certain brain circuits involved in seizure activity are related to and sometimes the same ones as those involved in the production of anxiety and depression.
Along with possible behavioral, cognitive, social, or psychological issues that children with epilepsy face, caregivers may respond differently to them. “Studies have shown that parents of children with chronic illnesses are often overprotective and more lax with discipline, which can actually suppress a child’s development and quest for independence,” Wagner said. “Parents have a lot of guilt because of what they see their child going through with epilepsy and I often hear parents say that it’s much more difficult to discipline a child who has so many struggles or who they want to be able to provide as many positive experiences as possible. I can understand why they feel this way, but parents have to understand that rewarding negative behavior is only teaching a child unhealthy ways of interacting with adults and peers. When I work with parents I try to explain why making changes, including being firm and setting rules in combination with rewarding positive behaviors, will positively impact a child’s behavior are so important for the child’s development. It’s important to also promote developmentally appropriate independence, including having responsibilities, which will improve their quality of life. By choosing to follow these basic behavior management ideas, parents can teach their children to interact appropriately with peers, teachers, and future bosses. We do not want to teach children to use their epilepsy as an excuse or crutch, but instead to succeed in the face of epilepsy. With modification these ideas can be followed with any age or developmental level, and often parents can benefit from professional help with them.”
Parents of children with epilepsy have many issues to face on a day to day basis, including financial concerns, adherence to strict diets for some, multiple seizure medications, navigating the school system, and marital and family strain. Wagner stressed the importance of caregivers taking time out for themselves and their relationships with spouses and other children. “You just can’t be every where, all the time,” she said.
And by creating an environment of appropriate developmental-level discipline and responsibility, parents can see a level of control and empowerment in their family. “With this kind of attention to and appropriate intervention for behavior, schooling, relationships, and mood in children with epilepsy, the child’s self-esteem is often enhanced and the child and parent gain a healthier sense of efficacy for seizure management,” Wagner said. “Sometimes you can’t change the seizures, but you can change the environment to facilitate a better outcome.”
“Most children with epilepsy are able to do anything so including them in all activities means a lot to them,” Smith said. “Having epilepsy does mean the person cannot be a pilot, should always have a swimming buddy, everyone should, ride a bike with a helmet, everyone should, and not climb heights, etc. Parents and children with epilepsy are taught possible ways to avoid triggering a seizure like staying hydrated. Parents need to know they do not cause a seizure by disciplining their child. Children need to learn limits and how to behave in order to be successful in their lives and grow.”
For school-aged children, Wagner encouraged parents to become advocates for their children and to reach out to school professionals to produce the best academic outcome for their child. Parents of teens and adolescents should remain vigilant and explain the dangers of children with epilepsy trying drugs or alcohol because of the complications that can arise from these behaviors in conjunction with epilepsy medication.
Wagner echoed Turner about structured sleeping schedules, and added that many benefits occur from regular meals, consistency in responses and routine, and remaining compliant with all medications and health care providers’ orders. It is important to promote healthy lifestyle habits for everyone, but especially for those with epilepsy because it can help decrease breakthrough, or first time, seizures.
“When I see families become empowered by making these changes, it becomes clear that epilepsy does not have to be in control of these people’s lives. Epilepsy doesn’t define you as a parent or a child.”
Epilepsy: True or False?
--It is contagious. False
--People with epilepsy are possessed. False
--People with epilepsy are crazy. False
--Seizures are always characterized by jerking, stiffening and loss of consciousness. False
Epilepsy resources
Wagner believes that one of the most important resources a family of a child with epilepsy can have is another family going through the same things. “Of course you can hear medical providers saying all these things but it’s really important to hear it from other parents who’ve been there,” she said. “I have a younger brother who’s been through a lot, and I’ve watched my parents go through a lot. My heart goes out to the families of children with epilepsy because I do have an understanding of what they are going through. It’s important to use all the resources and talk to other families. Find what your child is good at and build on those areas of strength.”
Smith said parents also need to know how to access resources in school like individualized education plans and places like the Miracle League or Special Olympics for sports activities. There are special camps in South Carolina like Camp Burnt Gin and the South Carolina Epilepsy Foundation Camp that occur each year to accommodate children with special medical needs. Other resources through the internet are:
http://www.epilepsyfoundation.org/local/socarolina, http://www.familyconnectionsc.org, and http://www.protectionandadvocacy-sc.org/.
Friday, Sept. 15, 2006
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