Jane Timmons-Mitchell, Ph.D.October 2, 2014

PROJECT CARE 4 E WEBINARTEENS AND EPILEPSY

Adolescent DevelopmentMajor 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

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

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

Transition Issues

• I know my medical needs ☐ ☐ ☐• I can explain my medical needs to others. ☐ ☐

☐• I know my symptoms including ones that I quickly ☐ ☐ ☐

I know what I need to see a doctor for. ☐ ☐ ☐

I know what to do in case I have a medical ☐ ☐ ☐

emergency. • I know my own medicines, what they are for, and ☐ ☐ ☐

when I need to take them. ☐ ☐ ☐• I know my allergies to medicines and medicines ☐ ☐ ☐• I carry important health information with me

every day (e.g. insurance card, allergies, medications,

emergency contact information, medical summary). ☐ ☐ ☐• I understand how health care privacy changes

at age 18 when legally an adult. ☐ ☐ ☐

Please check the box that applies to you right now. Yes, I need Someone needs

I know this to learn to learn…Who?

Gottransition.org

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.

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

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

Sample Behavior ChartRule 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

MonTuesWedThurs

YYYN

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 MonTuesWed

YYYY

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

FriSat

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

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

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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.

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.

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.

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.

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/

Conclusion•Wrap up: • Please complete the Qualtrics survey by clicking on the link. • Next webinar:

• Contact information• jct2@case.edu• (216) 368-5986