1. Living with seizures
Cheryl Cahill, MSN, RN

2. 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

3. 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

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

5. 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

6. 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

7. 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

8. 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

9. 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?

10. 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?

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

12. 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

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

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

15. 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

16. 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

17. My Son……Tim