May We Introduce You To: Amy Haugen, Epilepsy Foundation Minnesota

Lee: Living with either of these disorders alone is hard for families. What are the challenges of families who are dealing with epilepsy and ADHD?

Amy: As we look at epilepsy and ADHD and the occurrence rates for developing both, we know that 4 out of 10 children with epilepsy also have a diagnosis of ADD or ADHD, while 1 out of 5 adults with epilepsy are living with both health conditions. A few of the challenges they may face are:

• Medication compatibility: some seizure medications may exacerbate ADD/ADHD behaviors and symptoms, while some ADD/ADHD medications may work great for that disorder while increasing risks for seizures.
• Simply identifying behaviors as being related to the epilepsy diagnosis and not the ADD/ADHD diagnosis may be difficult. For example, a generalized absence seizure typically displays as a “staring off” or “daydreaming” for a few seconds to a few minutes, and sometimes looks like inattention, when it is actually a specific type of seizure. Another good example is a focal impaired awareness seizure, that can manifest itself in a variety of ways. One way is for the person to mumble, repetitively move or wander around without a purpose. The person experiencing the seizure typically does not know what they are doing and may respond aggressively to someone who touches them, and it could easily be mistaken for an inability to sit still or to focus. This could be mistaken for ADD/ADHD behaviors.

Lee: How difficult is it to find health care providers who understand both disorders and the medications? 

Amy: We typically find that patients who are diagnosed with epilepsy have first seen a primary care provider, who refers them to a general neurologist. Oftentimes, once they see a neurologist and have an EEG (electroencephalogram) that confirms seizure activity, they will have a treatment plan that involves medication. If that medication does not work, and/or they are already diagnosed with ADD/ADHD as well, the neurologist may refer them on to a Level 4 epilepsy center. These health care providers with the level 4 centers specialize in epilepsy first, and the related co-disorders that a patient may be experiencing. Many of these centers have a whole-person approach to treatment, that includes an epileptologist (neurologist with a specialized training in epilepsy), a psychiatrist, a dietician, a pharmacist, and a social/caseworker. This approach allows for the treatment of the whole-person, which when there is a dual diagnosis can be key in finding the right balance of medications and other treatment options. We are fortunate in the state of MN to have 3 of these centers specializing in adults and 4 that specialize in pediatric care. They are located in the Twin Cities and Rochester. 

Lee: What other support services or special needs do these unique families require?

Amy: Many times, with a dual diagnosis, an individual may need additional supports in school and in work settings. The school setting oftentimes means screening for eligibility for IEP or 504 plans that are tailored to the needs of the individual student. In the work setting, we often have individuals who require accommodations that are protected under the ADA. For example, the number of hours worked per day, or an accommodation for more frequent breaks to give their brain a rest, or to take medications, are just a couple of examples. We have also seen a large number of our clients, apply and begin the process for obtaining a seizure alert dog. These animals are specifically trained as a support to the individual and a responder to a seizure event. They are trained to do things like sound an alarm, carry rescue meds, and lie under the person’s head to protect them during a generalized tonic clonic (formerly known as a grand mal) seizure.

Lee: What is the most important thing our readers should know about living with seizure disorders and ADHD?

Amy: I think that knowing you are not alone on your journey with these two diagnoses is very important. Epilepsy and ADD/ADHD can be isolating, in themselves, but when you are diagnosed with both, the isolation can be magnified. Knowing that there are organizations like EFMN and A-D-A-M that can connect an individual or family to another individual or family who can share commonalities in experiences can break the isolation cycle. The other important thing to remember is advocate for yourself or for your loved one. Educate yourself, reach out for support, and advocate. Those are three key focus areas that will help in the journey.

If you have questions or would like more information you may email Amy at amy.haugen@efmn.org; or call 320.203.9722