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Epilepsy & autism: the importance of medication management: adherence to medication management provides the best avenue to achieve the intended goal of therapy.

People with both autism and epilepsy have an 800 percent higher mortality rate than those with autism alone. Autism Tissue Program (ATP) researchers, who examined data gathered from the California State Department of Developmental Services, found this information. In addition, it is estimated that 25% of those diagnosed with an autism spectrum disorder will suffer at least one seizure before the onset of puberty, as stated by Gregory Stevens in "Autism and Seizures: Are they connected?"

"A child with ASD has up to a 25 percent chance of experiencing an epileptic seizure by the time he enters early adulthood," says professor Orrin Devinsky at the New York University School of Medicine, director of the NYU Comprehensive Epilepsy Center, and the author of a paper in the April issue of Epilepsia. In that paper, Devinsky showed that seizures suffered by children with ASD are also more likely to be treatment resistant than those of children without ASD.


"Among patients with good follow-up data," says Devinsky, "between 40 and 50 percent of the kids with autism and seizures also had refractory [not responsive to medicine] epilepsy."

"Epilepsy is a burden for everybody who has it," says Devinsky. "But for kids with autism it can be much worse. They're already compromised and then they get hard-totreat epilepsy, too, plus the added medications and the side effects that can come with them. For families already coping with the huge challenges of autism, the addition of epilepsy can be devastating," as written in "Deciphering the one-two punch: Epilepsy and Autism" featured in EpilepsyUSA (pg. 6).

The psychosocial implications of a person with autism that experiences seizures are important to consider. People with autism and epilepsy may fear going out in public because a seizure may cause embarrassment or injury Teaching the family and the caregiver about medication management is important to counter some of the myths prevalent to this disease.

Various drugs are used to manage epilepsy and autism. As with all drugs, it is always beneficial start low and progress slowly. Because an individual diagnosed with epilepsy and autism is likely to be taking other medication, drug to drug interactions, dose limited absorption and adverse reaction should be wisely considered.

Adherence to medication management provides the best avenue to achieve the intended goal of therapy. Consequently, non-adherence to recommendations interferes with the treatment efficacy. According to study on managing medication for children and adolescents, done by National Resource Center of ADHD, approximately 30 to 70 percent of patients with chronic illnesses have poor adherence because of extended treatment duration, multiple medication, and period of symptomatic remission.

The study also found out that clinical experience indicates that poor adherence is common in a patient with chronic illness, for example, a patient with cystic fibrosis, epilepsy, asthma and diabetes. Despite patient need for treatment and good intention to be compliant, individuals still have difficulty adhering to treatment regimen, especially when they are long-term management. Acceptance plays a major key on how compliant people are with their medication management. People who accepted their diagnosis of a major medical condition with a long time medical management are more involved and adhere with treatment. However, achieving the uttermost effect and benefit of medication involves taking the right medication at the scheduled time and the right prescribed dose.

There are many reasons for non-adherence to medication which includes: Taking more than one type of pill, forgetfulness, poor organization skills, and lack of self-care management. Some of these behaviors are prevalent in patient with autism and epilepsy. Developing common tips and routines can help you to manage medication properly.


If you are taking more than one medication, a common tip is to arrange your pills in a weekly medication set up. Keeping a tally sheet, marking your calendar or using visual reminders is also helpful. You can also ask your health care provider for once a day medication if practicable. If you are forgetful, incorporating your medication with a daily routine like meal or morning care may serve as a reminder. Permitting other family members to assist you with, and remind you of time schedule for medication intake is also beneficial. Sustained release preparation, or medication with extended half-lives, can be uses to decrease the number of medication administration. Ask your healthcare provider for a clear explanation of diagnosis and new treatment options that may involve simple regimen and possibly fewer pills.

The use of assistive technology can be beneficial to most in regards to medication management and reminders. For iPad users, there is a medication reminder app that can be purchased. On, you can find a vibrating count down interval timer & alarm with belt clip made by e-pill. Also found on is a talking alarm clock and medication reminder made by Medcenter. If you are on the go, the apex pocket med pack with a seven day tray may come in handy. For a reasonable price, you could purchase a cadex 12 alarm medication reminder watch made by e-pill.

Medication management and adherence is important in every population with a long term illness, but more especially in individuals who are epileptic and autistic. Remember that medications will not be effective if you do not take it as prescribed. explains "Seizure medications come with dosing schedules varying from once a day to many times per day. If the doses are frequent and the overall schedule for multiple medicines is complicated, then it can be hard to take them correctly. Yet, taking them correctly may be the best way both to control seizures and minimize side effects. Joyce Cramer, President of the Epilepsy Therapy Project, and an internationally recognized expert on how to take medications, discusses this issue and provides a useful toolkit."

In brief, here are some things that you can do to help to remember your medicines.

* Commit to taking the pills: if you do not take them, they will not help.

* Discuss ineffectiveness or side effects with your doctor. Do not stop on your own.

* Discuss with your doctor whether your pills can be taken in a simple regimen, for example, once or twice a day and with all pills taken in the same batch.

* Be honest with your doctor about why it is hard to take your pills as prescribed.

* Get on a schedule and in the habit.

* Use pill boxes or alarm reminders to help you to remember.

* If pills are left over at refill time, you are forgetting to take some of them.

* Have a plan for catching-up if you miss your medicines.

* Look into using the toolkit in this section.


According to the Autism Speaks, "It is well established that epilepsy is a major medical disorder that is often comorbid with autism in as many as 30 percent of children. As many as one in 20 children diagnosed with autism by age three could either already have epilepsy or develop epilepsy later in life. As noted by the Autism Tissue Program (ATP) more than a decade ago, sudden unexplained death in epilepsy (SUDEP) has been identified as a cause of death in individuals with autism."

Autism Speaks vice president of clinical programs Clara Lajonchere, Ph.D., explained: "Sudden, unexpected or unexplained death in autism is often, but not always related to epilepsy and we need to use caution when interpreting these data."

"In a pair of pediatric epilepsy units, 77% of children screened positive for development delay, and 36% screened positive for autism. About one-third of those children were previously undiagnosed."

Because the conditions often occur concurrently, a screening of children five years and younger can make a life-changing difference, Anne Berg, Ph.D., said at the annual meeting of the American Epilepsy Society. "Our hope is that we can begin catching these problems earlier to get beneficial interventions in place, which, hopefully, will lead to better long-term outcomes for these children," she said.

With all the information published and presented on the Internet about epilepsy and autism, there is no denying that there is a strong correlation between autism and epilepsy. Generally, during adolescence, one in four autistic children develops epileptic seizures. As epilepsy is treatable, it is so important for those with epilepsy be efficient with their medication management. The pills can only help if they are taken. So the first step in properly managing one's medication is to take it as prescribed. Often times, people will feel good and therefore feel that they do not need to take their medication. This cannot be further from the truth. It is important that people who take medication(s) educate themselves and become aware of the effects and purposes of the medications.

By Erin Vlasak and Rose Ezeani-Antwi MS, ANP-C

About the Author:

Rose Antwi is medical director for the Vocational Independence Program (VIP). She oversees, coordinates and supervises the medical office at VIP. She earned her Master's in Science from Stony Brook University. She is a fellow of AANP. Erin Vlasak is director of Student Services for the Vocational Independence Program. She oversees the social counseling, residential life and fitness programs. The goal of the position is to promote wellness in a holistic sense amongst the student body. She has a Master's degree in College Student Development from Long Island University and a certificate in school counseling
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Title Annotation:The Annual HEAL+HCARE Issue
Author:Vlasak, Erin; Ezeani-Antwi, Rose
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Aug 1, 2012
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