Project CARE

1. Project Care 4 Epilepsy
Teens and Epilepsy
Jane Timmons-Mitchell, Ph.D.
November 6, 2014

2. Adolescent Development
Major areas of change in adolescence include:
• Physical:
• growing taller and gaining weight
• puberty and secondary sex characteristics
• brain development
• Thinking:
• learning to reason effectively
• learning to think about things you can’t see
• learning to think about thinking
• Getting along with others:
• becoming your own person
• knowing what is and what is not like you
• becoming close to others in romantic as well as social ways
• being comfortable with sexuality
• achieving

3. Issues for Teens with Epilepsy
• Taking medication regularly and as prescribed
• Healthy eating and exercise
• Sleep hygiene
• Concerns about body image and self-esteem
• Changing seizure patterns
- Some seizures may decrease
- Some seizures may increase
- Medications may need to be reviewed

4. Helping Teens Transition to
Adulthood
• All teens are concerned with issues of transition
• For teens with epilepsy, one issue is transition of
medical care
• This may be a formal transition from a pediatric
setting to an adult setting, or a transition to an adult
model of care from a pediatric model within the
same setting
• The American Academy of Pediatrics has adopted
guidelines recommending that all teens and their
families begin this discussion early, around age 12
to 14, to be accomplished by age 22

5. Gottransition.org

6. Effective Parenting of Teens
• Goal: to foster age-appropriate development of autonomy,
in the context of respect and trust, while verifying that
safe behavior choices are made.
• It can be difficult to parent a child with a chronic condition
in this way: parents get used to other ways of parenting
- Many parents have to spend a lot of time and effort
ensuring that their children have proper care
- It can be difficult to allow teens to have the chance to
engage in activities on their own, worrying about
seizures
- Often, parents perform many advocacy functions (at
school, with peers). These don’t go away, but they
need to change to be age appropriate for teens.

7. Tools for Effective Parenting
• Keep in mind: Safety is the first priority
• Identify things teens care about
• Monitoring is not a dirty word
• Chore charts with reward incentives
• Behavioral contracts/rules

8. Rewards and Consequences
• Privileges must be highly desired by child
- Electronics, like smartphone, computer
- Social media
- Playing video games
- Privileges to go out with friends
• Good behavior needs to rewarded frequently
• Privileges must be tied to a specific rule
• Match rules to developmental level of child
• Rules and privileges must be discussed before
being implemented
• Two parents must develop rules jointly and
administer rewards consistently

9. Sample Behavior Chart
Rule Privilege Consequence Day Y/N
Tia takes all
meds as
prescribed
during the
day
Tia can go
out till 8 p.m.
after h/w is
done
Cannot go out
after h/w is done;
cannot use cell
phone, computer
Mon
Tues
Wed
Thurs
Y
Y
Y
N
Tia is in the
house on
school nights:
9 p.m.
Can use cell,
home phone,
computer till
10 p.m.
No use of cell,
home phone or
computer (other
than h.w)
Sun
Mon
Tues
Wed
Y
Y
Y
Y
Tia is in the
house by 11
p.m., Fri/Sat
Weekend
curfew 11
p.m. next
weekend
Weekend curfew
9 p.m. next
weekend
Fri
Sat

10. Issue Examples of Effective
Parenting for Teens with Epilepsy
• What we will address:
- Taking Meds
- Sleep
- Exercise
- Use of alcohol and other drugs
- Peers
- Keeping in touch (monitoring, curfew, etc.)
• What we won’t address
- Driving: Dr. Pestana Knight will address in future webinar
- Sexuality/Pregnancy: Dr. Pestana Knight will address in future
webinar
- Depression and mental health: Dr. Falcone will address in
future webinar

11. Talking about Taking Meds
• Taking AEDs is essential for teens with epilepsy
• Teens may not want to take meds
• Some strategies for helping with medication
adherence:
- Pill taking should be part of the daily routine,
connected to a habit like brushing teeth
- Use a pill container. It organizes when to
take pills as well and acts as a reminder of
what has been taken.
- Electronic reminders, such as an alarm on
the phone

12. Ideas for Talking about Taking Meds
• You have probably heard complaints from your teen about taking
the prescribed anti-epileptic medication. Here is one scenario:
- Have you taken your pills?
- Teen: No and I’m not going to take them, or, Yes (when she
hasn’t).
What do you say or do?
How about starting differently.
- I’m going to take my medication now because it helps me
breathe better. Why don’t we take our medications together?
I am sure you want to have a seizure-free day.
- OR
- I know it’s not your favorite thing to do, but remember, if you
take your medication on time and as prescribed for three more
days, you can earn that new nail polish that you are interested
in trying.

13. Talking about Sleep
• Getting enough sleep is important for all teens
• According to the CDC, most teens need between
9 and 10 hours of sleep each night
• Most teens don’t get this much sleep
• For teens with epilepsy, getting enough sleep is
important, since too little sleep can contribute to
an increase in seizure activity.
• Sleep hygiene is an evidence-based way of
promoting adequate and restful sleep.

14. Sleep Hygiene
• National Sleep Foundation recommendations:
• Go to bed at the same time each night and rise
at the same time each morning.
• Make sure your bedroom is a quiet, dark, and
relaxing environment, which is neither too hot
or too cold.
• Make sure your bed is comfortable and use it
only for sleeping and not for other activities,
such as reading, watching TV, or listening to
music. Remove all TVs, computers, and other
"gadgets" from the bedroom.
• Avoid large meals before bedtime.

15. Ideas for Talking about Sleep
• Does this ever happen when it’s time for bed?
• OK, it’s time to stop playing that video game and go to bed
now.
• Oh geez, Mom, I’m on a higher level than I’ve ever been on
before. If I quit now, I’ll have to start over. (whines)
• How about:
• OK, in half an hour it will be time to go to bed. Remember that
we made an agreement that you would stop playing video
games and put you phone away a half an hour before bedtime.
• OR
• Yesterday that you felt better because you had gotten enough
sleep so you weren’t tired at school. Getting on this regular
schedule to go to sleep at the same time can really help. It will
be time to go to bed in half an hour.

16. Talking about Exercise
• Exercise is not likely to increase seizures if properly
monitored
• Sometimes teens may gain weight on anti-epileptic drugs
• Exercise and healthy eating can help teens decrease worry
about weight gain
• Evidence suggests that exercise helps decrease anxiety
and depression which may occur in teens with epilepsy
• Some exercise is to be avoided:
- Horsebackriding and diving
- Mountaineering and parachuting
- Marathon running
- If seizures are not well controlled, high impact contact
sports: football and ice hockey
• Swimming requires on-site supervision

17. Ideas for Talking about Exercise
• There are so many things to keep track of that a conversation
about exercise may not make it to the top of the list often.
You can link it to your teen’s complaints about self-consciousness
and body image.
• I’m so fat; I really hate the way I look and I don’t want to go to
school.
• Well, honey, all girls your age feel that way sometimes. I don’t
think you’re fat, but if you would like, you can come with me
when I go to the gym to exercise today.
• OR
• Why don’t we turn off the TV and take a walk around the
block? The weather is beautiful; I think we could both use
some fresh air.

18. Use of Alcohol and Other
Drugs
• Teens with epilepsy should not use alcohol or
other recreational drugs
• These could cause forgetting to take meds or
not recognize early signs of a seizure
consequences
• If a teen is with others who are using and has a
seizure, it is possible that they would attribute
it to the use and not seek appropriate help.

19. Helping Teens to Say No
To Alcohol and Drugs
• It can be hard to be the only one not drinking/using at a
party
• You can just say “No thanks.”
• If peers know about the epilepsy, you can say “It might
cause me to have a seizure.”
• If you have a good sense of humor, you can say “No
thanks, I’m already on more drugs than anyone else
here.”
• aboutkidshealth.ca

20. Ideas for Talking about using Alcohol
or Drugs
• It may be difficult to bring up the subject of alcohol or
drug use, since using could have dire consequences.
It’s always challenging to talk about something that is
scary for you. Honesty is the best policy.
• You know, I was thinking the other day. When I was your
age, a lot of kids were drinking and using drugs. You
know that drinking and drug use could really hurt you,
right? I’m sure you want to make good choices to be
safe.
This topic leads perfectly into the next: Peers, since most
kids who use have peers who use, and vice versa.

21. Talking about Peers
• It’s great for teens to do things with peers
• As is true for all teens, it’s important for parents of teens
with epilepsy to know peers and their parents before
agreeing to allow activities
• How do you assess positive peers?
- Positive peers engage in positive activities, are often
good in school, and are trustworthy.
- Positive peers support a teen with epilepsy in taking
meds, avoiding risky behaviors, and promote healthy
development.
• How do you know if parents are appropriately supervising?
- Parents who don’t resent your asking about supervision
- Parents who agree that they would take appropriate
action if a teen has or thinks he is about to have a
seizure.

22. Ideas for Talking about Peers
• Teens sometimes complain about parents who monitor their
peer activities appropriately, since many parents do not do
this, and teens sometimes feel that it is their right to be left
alone.
• Who hasn’t heard the complaint, “Why do you have to ask
questions about where we are going? Susie’s mother
doesn’t ask questions like you do.”
• It’s best not to respond directly to this non-question.
• I know you don’t like it when I ask where you are going and
who you are going with. You know it’s because I want to be
sure I know where you are. I also want to know that you are
with someone who knows about your epilepsy and what to
do about it. I wouldn’t be a very good parent if I didn’t ask
these questions.

23. Talking about Keeping in
Touch
Each time a teen wants to go out, they should be able to say
• Who they will be with
• What they will be doing (specifically)
• When they will be doing it, and when they will be home
• Where they are going
• How they are getting there, and how they are getting
home
There should be agreement ahead of time about what curfew is
acceptable, how it will be tracked, and what will happen if it is
not met.

24. Ideas for Talking about Keeping in Touch
• If plans change, your teen should know how to reach you and
what an acceptable plan is.
• You don’t want to be on the receiving end of this exchange:
• Hi, Mom. So the group of us came out of the movie and we
went to get ice cream. Carter wants to know if we can all go to
his house for a sleepover.
• Of course, this is not a request that you can agree to.
Sleepovers have to be agreed to in advance, since they affect
the medication schedule. Even if you know Carter and his
parents, you don’t know whether they have agreed to the
sleepover, or whether they will be home.
• So, you say, I’m sorry, no, you will have to come home now.
Do you have a ride home? I can come to get you if you need
me to.

25. Bottom Line: Talking with Teens
• You and your teen will have different points of
view about most things. You don’t have to agree.
Most effective parents are not popular with their
teens. Research shows that parents who are
more like friends to their teens have teens who
engage in more drug use, for example.
• Your teen may often try to distract you by saying
you’re mean, or that you’re ruining his or her life.
It’s important to remember why you are saying
what you are saying and to continue to say it: you
are working to keep your teen safe and seizure
free.

26. Resources
• For parents
- Epilepsy Canada
http://www.aboutkidshealth.ca/en/resourcecentres/epilepsy
- Gottransition.org
• For teens
- Teen’s Corner on the Epilepsy Canada
website
- University of Virginia Health System website
https://www.healthsystem.virginia.edu/intranet/per/

27. Conclusion
• Wrap up:
• Please complete the Qualtrics survey
by clicking on the link.
• Next webinar:
• Contact information
- jct2@case.edu
- (216) 368-5986

28. Questions?
We will now begin our
Question and Answer
session.