Working as a Team, what can

you do to make your doctor

visit better?

Elia Pestana-Knight, MD

Pediatric Epileptologist

Cleveland Clinic

Tatiana Falcone, MD

Child & Adolescent

Psychiatry

Cleveland Clinic

Managing your child’s care

• You are an integral part of your child’s

care team

• Everyone who interacts with your child

has an important role in your child’s care

team

• Who is in your child’s team?

• Your job as a parent is to recruit the best

people to be on your child’s team

Team Approach in Pediatric Epilepsy

Patient and

Family

Pediatric Neurologist

Pediatric Epileptologist

Pediatrician

Nursing

Other relatives

involved in care

Daycare, School and

teachers including

school nurse

Family Advocacy

Groups (Support Groups)

Pharmacy

Medical Home

What is a Medical Home?

• All children with epilepsy should have access to a medical home

• Health services for CYE should be accessible, family-centered continuous, comprehensive, coordinated, compassionate and culturally-competent

(American Academy of Pediatrics)

Useful resources

• www.medicalhomeinfo.

org

• www.medicalhomeinfo.

org/tools/care_noteboo

k.html

• http://my.clevelandclini

c.org/Documents/Neuro

logical-Institute/coping-

and-resilience-medical-

home-resources.pdf

Medical Home

• Medical home promotes prevention

• Provides care for most problems and serves as the point of first-contact for that care; coordinates care with other providers and community resources when necessary

• Integrates care across the health system, and provides care and health education in a culturally competent manner in the context of family and community

• Who is your point person?

(The AAMC position statement 2008)

What else is Medical home

• Sharing clear information with the family about patient care

• Assurance of around the clock care

• Continuity of care

• Identification of the need for consultation

• Interaction with early intervention program

• Maintenance of a comprehensive, accessible medical record, preserving confidentiality

American Academy of Pediatrics

Seizure Action Plan

• If your child has epilepsy, you should

have a seizure action plan (SAP)

• The SAP provides guidelines on how to

respond when a student is

experiencing seizures

• The SAP is created with input from the

parents/guardian/physician/neurology-

epileptologist

http://www.epilepsy.com/sites/core/files/atoms/files/seizure-

action-plan-pdf_0.pdf

Seizure Action Plan

• Every child with epilepsy should have SAP

• It should be kept at school, the school

nurse should have a copy, the teachers,

and coaches, too.

• It gives the school guidance on how to act

when your child is having a seizure

• There is no cost

• It should be updated at least once a year

or more if needed

Important Information to Know

• What are your child’s medications? Are they taking them on time?

• Side effects

• Tracking the seizures (especially after medication changes)

• ALWAYS, ALWAYS talk to your doctor before making any changes in your child’s medication

• The most important thing you can do to prevent seizures is making sure your child is taking their medication as prescribed

New Technology is on Your

Side!

RECORD THE SEIZURE OR

EVENT!!!

You Know Your Child Best

• You are the best advocate for your child

• You are an important part of the team

• Talk to your doctors about your child’s

needs; the more the doctor knows about

the impact of the medication or the side

effects, the more they can help you

• Have you identified any triggers for the

seizures?

Communication is Key

• All the information that you can gather before the appointment is very important (school, other caregivers, rest of the family)

• Any changes in behavior or mood are important to discuss

• Your doctor is also your advocate. Is there any other documentation you need in order to get the services that your child needs at school or for the IEP—did you ask for what you need?

How to best manage your child’s

epilepsy – seizure management

• Did you ask your doctor what is the next step?

• Are there other things I can do to help avoid seizures?

• Do I understand the changes on the meds and why they are important?

• What are the most frequent side effects of the AEDs that my child is taking?

• If the medication is going to be given at school, did I bring the school form? Do I have my doctors fax number?

Questions about treatment

• Is there anything we can do to prevent

or potentially manage the side effects?

• When should we considering changing

the AED if there are too many side

effects?

• My child’s behavior has changed—is

that related to the medicine?

• Are there other treatment options?

Activities and other concerns

• Are there any sports or activities that my

child should avoid?

• My child’s grades are not good, what

should I do? Medication vs. Cognitive

issues vs. Seizures

• The school is not really following the IEP

• When should I have my next appointment?

• Are there any other resources we should

know about? Support groups? Parent

organizations?

Managing life with epilepsy

• Understand your child’s diagnosis

-- background

-- Specific diagnosis

--Prognosis

--Treatment options

-- Side effects

--How to manage your child’s seizures

--Safety

• Learning and psychological issues

• School issues

• Resources

• Did you connect with local support groups?

• Educate your family

• Educate everybody around your child

• Talk openly about epilepsy (combat stigma)

Mental Health

• 37%-77% of youth experience

psychiatric problems

• Attention problems, mood problems

and thought problems could be

secondary to the nature of epilepsy

• Cognitive deficits, family problems, and

linguistic deficits can have an impact

on psychopathology

(Plioplys S, Dunn D, Caplan R. 10 Year Research Update, Psychiatric

problems in CYE. JAACAP 2007;46 :11, 1389-1402)

Unmet need

• The risk of untreated mental health problems in children with epilepsy is probably contributing to the risk of suicide in these patients

• A Denmark population study that identified 21,169 suicide cases, reported that 492 of those had epilepsy, demonstrating that patients with epilepsy had a 3 times higher risk of suicide compared with the general population

Mental Health

• Don’t ignore the symptoms—it wont get

better unless we address them

• Even when the seizures get better, the MH

problems have an important impact on the

quality of life of youth with epilepsy

• There is treatment to help with mood,

attention, anxiety, and thought problems

Bullying can result in:

• Depression

• Anxiety, PTSD

• School avoidance

• Poor academic performance

• Suicidal thinking

• Substance abuse

• Fighting

• Carrying weapons

Take Care of yourself

• Support is key, do not do it alone

• What are the resources in your area?

• Online support groups

• Let’s talk about feelings

• Continue family traditions (adapt)

• Take care of everybody in the family

• If it is too hard, and you are finding yourself overwhelmed, ask for help—counseling, support groups

Mental Health Tool Kit for CYE

http://begun.case.edu/

wp-

content/uploads/201

3/08/1.-Mental-

Health-Toolkit.pdf

Or email us and we

can send you the

tool kit

hagend@ccf.org

Thanks for Listening!

Let’s Work Together to

Take Care of Our Health

We will now have a question

and answer session

Thank you!

Project CARE

This educational session is available to you from a Grant from

Health Resources Services Administration Grant #H98MC26260