Living with seizures Cheryl Cahill, MSN, RN

Welcome to Holland We were supposed to go to Italy, but we have all landed in Holland Now that we have landed in Holland, what are we supposed to do

epilepsy Epilepsy is not a “glamorous” condition Epilepsy can often be a life long condition Epilepsy is unpredictable Epilepsy has an impact on the entire family, not just the patient

What I have learned over the past 25 Years My personal experience What I have learned from my patients and their families

Personal experience My son Tim was diagnosed with infantile spasms at 6 weeks of age At 5 and ½ months he had epilepsy surgery Seizure free for 7 years Episode of status epilepticus at age 7

Personal experience Don’t let illness define your child or your family Learn how to advocate early on – there is a difference between advocating and being a “difficult parent” Focus on what your child can do, rather than what they can’t do Ask for help Let your child lead as “normal” life as possible

Professional experience I have had the privilege of caring for patients and families with epilepsy and they have taught me more than I could have asked for I have laughed and cried with them over the years

Office visits and phone calls to your child’s physician Be prepared – seizure calendar, medication list, paperwork Ask Question – Don’t be afraid, even if they seem trivial Have information repeated if you don’t understand it Never second guess yourself at home - CALL

Important questions to ask When is a seizure considered an emergency? When do I administer emergency medication? When should I call physician? When do I call 911 and/or go to emergency room?

Important questions to Ask when starting a new medication Ask for printed material on the medication How is the medication given? – Do not use household measuring tools What are the most common potential side effects? What do I do when my child misses a dose of medication or receives the incorrect dose? When to obtain labs and what is the desired blood level?

Stressors when caring for a child with epilepsy Emotional stress Physical stress Financial stress

Emotional stress Initial diagnosis – go through stages of grief and wonder how am I going to be able to handle this Siblings– Encourage them talk, spend one to one time with them Marriage – This takes a toll on even the strongest relationships

PHYSICAL STRESS Lack of sleep Epilepsy is unpredictable Physical care of the child as they get older

Financial stress Often times one parent has to leave their job to care for their child Out of pocket medical expenses Utilize social work

Sudep(sudden unexplained epilepsy in sleep Important issue to discuss with your child’s neurologist Risk factors – not taking meds as prescribed, epilepsy > 10 years, more than 1 seizure per month, GTC sz, seizures during sleep, age 20-45, seizures not well controlled Causes – unknown, but research ongoing

Sudep(sudden unexplained epilepsy in sleep What you can do to lower the risk – follow treatment plan, healthy lifestyle, sleep hygiene, regular apts. with MD, trained caretakers – trained in identifying seizures, CPR, seizure first aid

My Son……Tim