Seizure and Epilepsy Frequently Asked Questions:

Q: What causes seizures?A: For the majority of people diagnosed with epilepsy, 70%, there is no known cause.  In the minority of cases where there is a known cause, it is typically an injury to the brain.  Some examples include: head injuries that occur during birth or an accident, brain tumor, stroke, genetic conditions or an infection like encephalitis or meningitis.  Children and adults are most often affected.  Seizures are divided into two broad categories, generalized and partial (Source: Epilepsy Foundation of America).

Q: Will medication control my child’s seizures?A: Doctors and Neurologists take many factors into consideration regarding treatment options for children with epilepsy.  Seizures are treated for many reasons, but most importantly to lessen the risk of seizure-induced injury, to reduce the risk of prolonged seizures, to lessen the cognitive effects of frequent seizures and to improve the child’s overall quality of life.  The primary goal is for the child to be seizure and side-effect free, and important considerations include the potential effectiveness of the treatment and the side-effects of the medication.  Treatment options are tailored to the individual child, and doctors will also consider the frequency of the dosage of medicine, the ease of administering it as well as cost considerations.  Because each and every child is unique and responds differently to medications and treatments, it is very important to make the most out of your visits with the doctor to ensure he/she knows how your child is responding to the medication.  It can be very helpful to keep a daily log or journal to note how your child is responding to the medication throughout the entire day and night.  While it is important to track the impact of the medication on your child’s seizures, it is also important to note changes in behavior, personality and mood, sleeping patterns, and issues related to school and play.  This information will help to gather your thoughts as you prepare for visits with your doctor.  Writing your questions down in advance and making note of the doctor’s answers will help you focus during your limited time with the doctor and the doctor will appreciate it too!  This type of detailed preparation will help the doctor find the best treatment option for your child.

Q: Will my child be on medication the rest of his/her life?A: Each child responds differently to medications and treatments for epilepsy, but doctors will typically discontinue therapy after 2-years of seizure freedom on medications.  Once off medications, 60% to 75% of patients will remain seizure free.

Q: What is refractory epilepsy?A: Simply stated, refractory epilepsy means that a seizure disorder is not responding to anti-epilepsy drug treatments (AED).  Some experts vary regarding the definition of refractory epilepsy; however, a generally accepted definition is the failure of two or more anti-epilepsy drugs and the occurrence of one or more seizures per month over 18 months.  Other terms frequently used are drug resistant or intractable epilepsy.  Parents and caregivers are advised to have a conversation with their doctor to find out what this diagnosis means for their child.  It is important to remember that there are other treatment options for those children whose seizures do not respond anti-seizure medications.  Your daily log or journal of your child’s seizures and response to medications will help you and your doctor determine the best treatment option for your child.  Talking with other parents who have experience can be helpful in preparing for visits with your doctor or with making important decisions regarding your child’s care.  Click here for information on the Discovering My Epilepsy Support Group or become a Support Group Facebook “friend”,  Click Here to visit the Discovering My Epilepsy Group on Facebook  to connect with other parents who may share similar experiences.  (Source: Epilepsy Foundation of America) 

Q:  My child has been diagnosed with epilepsy and I don’t know where to turn. 

A:  The Matty Fund Epilepsy Resource Center is the realization of a dream for Richard and Debra Siravo to help other families living with epilepsy.  Matty was diagnosed with epilepsy just before his first birthday and their personal experience throughout his illness drove them to create a resource here in Rhode Island for other families.  The onset of seizures and all that takes place after that can be devastating for the entire family. Connecting to other parents and caregivers who have been down the same path can be one of your greatest resources.  They understand the fear and isolation that this diagnosis brings, and most of all, they can help you overcome these feelings to become the best advocate for your child.  The Matty Fund’s “Discovering My Epilepsy Support Group” is an opportunity for parents and caregivers to meet in-person while their children enjoy a play activity or arts and crafts.  It can be so helpful to talk to others who have had first hand experience with medications and other treatments, or have been an active participant in the development of their child’s Individual Education Plan (IEP) or 504 Medical Plan, or have had to advocate for their child to get what they need in school or help through a state or local agency.  Families meet monthly and communicate between meetings by email and social media sites.  Click here  for more information about the Discovering My Epilepsy Support Group and schedule of meetings.  Facebook users can join the Disocvering my Epilepsy Facebook Group by Clicking here .

 
Q: I am concerned about my child’s quality of life and safety while he/she is away from home, especially while he/she is in school.  What can I do to help?

 

A: Raising awareness about the realities of epilepsy is the single most important factor in removing the stigma and fear associated with this condition.  It can be especially helpful to advocate for an epilepsy awareness program at your child’s school.  While this is true at any school age, teaching children at a pre and elementary school age encourages life long acceptance and understanding.  The Matty Fund offers a wonderful epilepsy awareness program for pre and elementary school children.  Each year, schools throughout the state participate in “Matty Hatty” an epilepsy awareness program where students learn about epilepsy in a fun, uplifting manner.  They learn seizure protocols and how to be a good friend to a fellow student who has seizures and epilepsy.  The program features a published children’s book written by Debra and Richard Siravo, “My Friend Matty-A Story About Living with Epilepsy”.  The program is age specific and the curriculum relates to what they are learning in their classes.  The event culminates with a Matty Hatty Dance-A-Thon where children dance wearing their silliest hat in honor of Matthew Siravo’s birthday.

We all know how important a teacher can be in the life of a child.  For one Matty Fund family a teacher made all the difference when their child, Tim, was in 4th grade.  The teacher, knowing Tim had brain surgery to treat his seizure condition asked him if he wanted to share his experience with the class.  Tim agreed and with permission from his parents he was scheduled to speak to his class for a few minutes.  Tim brought his MRI scans with him and a ten minute presentation turned into an hour with questions and answers.  The teacher told Tim’s mom that it brought tears to her eyes, and her only regret was that she didn’t tape it!  From that day forward Tim was known around school as “the cool kid”!  By sharing his story, he took away the fear and misconceptions about his epilepsy.

Contact the Matty Fund for more information about bringing the “Matty Hatty” epilepsy awareness program to your child’s school.  Click here  to order a copy of “My Friend Matty-A Story About Living with Epilepsy”

Q:  What is Katie Beckett and how can I get more information about it?

 

A:  Katie Beckett is an eligibility category in the RI Medical Assistance Program that provides Medical Assistance coverage for certain children under age 19 who have long-term disabilities or complex medical needs and who live at home.  Katie Beckett eligibility enables these children to be cared for at home instead of an institution.  Only the child’s income and resources, not the parents’, are taken into account during the application process.

A child must meet the following eligibility criteria for Medical Assistance coverage through Katie Beckett:  The child must: be under age 19; be a U.S. Citizen or eligible non-citizen; be a Rhode Island resident; meet income and resource requirements; meet the Social Security Administration’s disability requirement; live at home; and require a level of care at home that is typically provided in a hospital, nursing facility or Intermediate Care Facility for Persons with Mental Retardation.  A child who receives Social Security Income (SSI) or is on RIte Care does not need to apply for Katie Beckett because both SSI and RIte Care provide the same covered benefits.

You can apply for Katie Beckett on-line through the Department of Human Services (DHS) website, www.dhs.ri.gov .  The Programs and Services link will bring you to the Katie Beckett application.  You can also call the DHS Katie Beckett social caseworker at (401) 462-0760 to learn what eligibility offers.

Q: Are there state and/or federal resources that provide medical assistance to children with disabilities or a chronic health condition?

A: Yes, the Rhode Island Department of Human Services website provides information on a variety of medical assistance programs for children with disabilities or a chronic health condition including RIte Care, RIte Share, Katie Beckett, and Supplemental Security Income.  Click here for more information and eligibility criteria for medical assistance programs for children with disabilities or a chronic health condition.  Click here  to read more about eligibility criteria and about disability benefits for children under 18 through the federal Social Security Administration.

Q: Where can I get information regarding Rhode Island’s Individualized Education Plan Process (IEP)?

A: The website for the Rhode Island Department of Elementary and Secondary Education provides information and resources regarding the IEP process in the state.  According to the web site:

“The Individuals with Disabilities Education Improvement Act of 2004 requires that all students with disabilities in need of special education services be provided a free, appropriate public education designed to meet their unique needs. The cornerstone of this provision is the development and implementation of the Individualized Education Program (IEP). The IEP must be developed at a meeting at which parent and school personnel jointly make decisions about the student’s program, and must be reviewed and revised at least annually.

The IEP provides goals based on the general curriculum to guide the special education services to be provided in the least restrictive environment, which for most children is the general education classroom. It also outlines the type and amount of such services. The IEP is a necessary resource for all teachers who are responsible for implementing the IEP and planning daily, weekly, and monthly instructional activities for the student with a disability.”

Click here  for a copy of “The IEP Process – Frequently Asked Questions”.

Click here for “The Extended School Year (ESY) – Frequently Asked Questions”.

Q: Are there resources available to help parents through the IEP and/or 504 medical planning processes?

A: Yes, both the IEP and the 504 medical planning processes can be very daunting and we have found that the experiences of other parents who have gone through or are engaged in either process can be a great resource for other parents.  You will find that parents and caregivers who participate in the Discovering My Epilepsy Support Group are all at different stages of raising children with epilepsy and are more than happy to share their knowledge and experience.  The Support Group Facilitator can readily connect you with other parents who can help you.  If you are unable to meet in person you can communicate by phone or email.  The Discovering My Epilepsy Support Group also has a FaceBook Page.  Click here  to become a Support Group “friend”. You can also contact the Matty Fund Epilepsy Resource Center to connect to appropriate resources to help you.  You can email MattyFund @cox.net or call 789-7330.

Q: Are there any comprehensive educational programs or workshops to educate parents and caregivers of a child with a disability including epilepsy?

A: The Rhode Island Parent Information Network (RIPIN) assists individuals, parents, families and children to achieve their goals for health, educational, and socio-economic well being by providing information, education, training, support and advocacy for person/family centered care and systems change.  RIPIN offers on-going workshops to inform and empower parents to become educated advocates for their children.  Workshops cover a host of topics related to raising a child with disabilities and range from educational and medical assistance workshops to those related to public policy.  For more information about RIPIN and a detailed description of their workshops click here

Q: Are there legal services in Rhode Island that can help me advocate for my child or help access benefits?

A:  The Rhode Island Disability Law Center (RIDLC) provides free legal assistance to persons with disabilities. Services include individual representation to protect rights or to secure benefits and services; self-help information; educational programs; and administrative and legislative advocacy. The agency administers eight federally funded advocacy programs, each of which has its own eligibility criteria.  Click here  to access the Rhode Island Disability Law Center web site.

Q: How can I help my teenager begin to think about and prepare for the future?

A:  The teenage years are a good time to start working with your teen to prepare them for later transitions to college, work and ultimately independence.  The joys and temptations of youth are challenging for most parents and children, but for parents of children living with epilepsy there are unique concerns as “our” children think about driving, college, work, relationships, and yes, even leaving home!  Then there are the worries associated with making good choices when peer pressure impacts teen decision making – substance abuse, staying out late, remembering to take medications just to name a few – this is enough to think about!

Here is one tool that some Matty Fund parents have started to use to help their teens start to take responsibility for their medications.  This idea was generated from the “Transition to Adulthood Independence” workshop hosted by The Matty Fund and Hasbro Children’s Hospital.   Try “Independent Day”- pick a day in the week that your teen takes responsibility for those tasks that you normally handle for them.  For example, on “Independent Thursday” your teen is responsible for their medications, after you have trained them of course!   They learn to become responsible for everything from calling in the prescription and picking it up to taking the correct dosage.  Family neurologists often get calls from a college student who is away from home, and has run out of medication for several days – not a good scenario.  “Independent Thursday” is an important first step to ensure your teen becomes a young adult responsible for their own health.  It was also suggested that students away from home get hooked up with a neurologist local to the college or school to manage medications from afar.

Q: Will a diagnosis of epilepsy impact my child’s ability to get his/her driver’s license?

A:  Laws vary per state regarding how long patients must be seizure-free before obtaining a driver’s license.  In some states physicians may “report” patients to the Department of Motor Vehicles.  According to the Department of Motor Vehicles in Rhode Island, individuals are responsible for reporting their history of epilepsy.  Doctors do not report patients to the DMV, but medical records could be summoned if a car accident occurs.  The seizure-free interval in Rhode Island is 18 months at the discretion of the DMV and the physician.

Q: What resources are available to help youth who are in transition?

A: The following agencies provide useful resources, tools and guides to help you prepare your teen to successfully transition to independence:

The Paul V. Sherlock Center on Disabilities

The Family Support 360 Transition Project at the Sherlock Center is a program for families with students ages 14–21who have significant developmental disabilities. This project engages and supports families in a comprehensive planning process to develop a smooth transition from high school to adult life. Call 401-456-8072.

The Rhode Island Parent Information Network

RIPIN’s Family Voices is a network of families and friends of children and youth with special health care needs. This network promotes the inclusion of families in decision making in the provision of health care services and supports essential partnerships between families and professionals. Call 401-727-4144.

Rhode Island Department of Health

The Office of Families Raising Children with Special Health Care Needs ensures family centered, community-based health care transition services for children and youth with special health care needs and youth with disabilities. The Office works in collaboration with families, other state agencies, health plans, and community agencies. Click here to access many useful transition tools and resources or call 401-222-2310 for more information.

Q: I have heard there are service dogs for people who have seizures…is that true?

A: Yes, the following is information from the Canine Assistants website…

What is a seizure response dog?

A seizure response dog is another type of assistance dog that assists by responding in a specific way AFTER a person has a seizure to provide help.  For instance, the dog may lay by the person during the seizure, retrieve a cordless phone for the person, alert another person (if available) or press a medic alert button. Click here to read FAQ’s regarding Canine Assistance service dogs

Can dogs predict or react in advance of seizures?

Yes, but it is a natural ability of the dog that scientists still do not understand and one that cannot be trained or selected. Anecdotal research shows that the dogs are likely responding to an olfactory cue or a certain type of smell. Canine Assistants cannot train our dogs to alert to oncoming seizures. Yet, once a recipient and their dog develop a strong bond, many Canine Assistants seizure response dogs (about 87%) do go on to PREDICT or react in ADVANCE of a seizure, usually with an unusual behavior, such as whining, pawing, pacing, jumping, barking, etc. This may happen a few to several minutes before a seizure, which can be quite helpful for individuals who do not experience an aura or feeling that the seizure is coming on.

Click here to access the Canine Assistants web site