Cystic Fibrosis and Mental Health
When Should I Worry About My Child?*
Young children may benefit from an evaluation and treatment if they:
- Have frequent tantrums or are intensely irritable much of the time
- Often talk about fears or worries
- Complain about frequent stomachaches or headaches with no known medical cause
- Are in constant motion and cannot sit quietly (except when they are watching videos or playing video games)
- Sleep too much or too little, have frequent nightmares, or seem sleepy during the day
- Are not interested in playing with other children or have difficulty making friends
- Struggle academically or have experienced a recent decline in grades
- Repeat actions or check things many times out of fear that something bad may happen
*Based on National Institute of Mental Health recommendations
Older children and adolescents may benefit from an evaluation if they:
- Have lost interest in things that they used to enjoy
- Have low energy
- Sleep too much or too little, or seem sleepy throughout the day
- Are spending more and more time alone, and avoid social activities with friends or family
- Fear gaining weight, or diet or exercise excessively
- Engage in self-harm behaviors (e.g., cutting or burning their skin)
- Smoke, drink, or use drugs
- Engage in risky or destructive behavior alone or with friends
- Have thoughts of suicide
- Have periods of highly elevated energy and activity, and require much less sleep than usual
- Say that they think someone is trying to control their mind or that they hear things that other people cannot hear
*Based on National Institute of Mental Health recommendations
Crisis Phone Numbers
If a child’s behavior is unsafe, or if a child talks about wanting to hurt him or herself or someone else, then seek help immediately. Call 9-1-1 or any of the following hotlines:
- Nationwide Children’s Hospital Behavioral Health Crisis Line: (614) 722-1800
- Netcare Access: (614) 276-2273 (24 hours call or walk in)
- Crisis Text Line: Text “4Hope” to 741-741
- Franklin County Youth MH Crisis Line: (614) 722-1800 (24-hour hotline)
- Suicide Prevention Hotline: (614) 221-5445 (24-hour hotline)
If you would like to connect with a provider at Nationwide Children’s Hospital, ask your Cystic Fibrosis provider or mental health coordinator for a referral.
- Psychology (Main Campus): (614) 722-4700
- Psychiatry (Main Campus): (614) 355-8080
For both psychology and psychiatry, schedulers will only place two calls to a family. Please call them back promptly.
To find a provider outside of the Columbus area:
- Ask our Cystic Fibrosis Clinic’s Mental Health Coordinator for a list of referrals
- Talk to your local pediatrician
- Look up local agencies at www.mha.ohio.gov/Families-Children-and-Adults/Get-Help/Find-Mental-Health-Service-Providers
Resources
For Children:
- Mallory's 65 Roses by Diane Shader Smith and Jay Jackson (1997)
- What's Up with Beth?: Medikidz Explain Cystic Fibrosis by Kim Chilman-Blair, Kate Hersov and Shawn Deloache
- The Spirit of Lo: An Ordinary Family’s Extraordinary Journey by Terry and Don Detrich (2000)
- Jasper's Story - Living with Cystic Fibrosis by Andy Glynne (2017)
- Breath by Donna Jo Napoli (2003)
- Sticky Icky Booger Bugs by Sherry Frith (2013)
- Walter and the Mucous Monsters: A Tale of Adventure and Cystic Fibrosis by Katherine Hitch (2009)
- Little Brave Ones: For Children who Battle Cystic Fibrosis by Carrie Lux (2006)
- Taking Cystic Fibrosis to School by Cynthia S. Henry (2000)
- Stevie’s Secret by Diane Shader Smith (1999)
- Ghosts by Raina Telgemeier (2016)
For Parents:
- Parenting Children with Health Issues: Essential Tools, Tips, and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster Cline and Lisa Greene (2007)
- There Are No Alligators in Heaven!: A Family's Perspective on Surviving the Unrelenting Savagery of Cystic Fibrosis by Donna Codell, Evan Michael Codell and Jennifer Hale (2017)
- Android - free, iPad - free
- Best for anxiety
- Android - free, iPad - free
- Best for anxiety and sleep
Moodpath: Depression & Anxiety
- Android - free, iPad - free
- Best for anxiety and depression
- Android - free, iPad - free
- Best for anxiety and depression
- iPhone, iPod Touch, iPad, Android - free
- Android, iPad, iPhone, iPod Touch - free
Support Groups for Parents and Families
Peer Mentoring for Family Members of People with CF
Our mentors are parents of children with CF (all ages) and partners/spouses of an adult with CF. You can talk to a mentor about:
- Coping with a new diagnosis
- Parenting at various ages and stages
- Finding balance as a caregiver
- Relationship and marriage
- Starting a family and more!
Visit www.cfpeerconnect.com for more information.
Peer-to-Peer Mentor Program
Our family-to-family program can carefully match you to an experienced peer to help guide you through your child’s diagnosis, treatment or surgery. This one-to-one relationship offers emotional support and provides the opportunity for you to ask questions of someone who is uniquely familiar with having a child with healthcare concerns.
Our trained volunteer mentors can contact you in a way that is comfortable and convenient for you. They can call you, send you an email, or meet you at the hospital or in the community.
If you have questions or just want more information, please email us at ConnectingFamilies@NationwideChildrens.org.
Caregivers Support Groups
CFRI provides a monthly CF Caregivers Support Group, which is open to participants nationwide. The groups are facilitated by a social worker well versed in issues facing CF caregivers. Participants are able to join anywhere from the country by telephone. Facilitated by Meg Dvorak, LCSW CF Social Worker at Stanford.
- Third Tuesday of every month from 5 to 6 p.m. PST
- Participate by phone or video conference via Zoom: www.zoom.us/s/555433812
