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A seizure is an electrical imbalance in the brain that can cause a variety of symptoms from small involuntary trembles to major uncontrolled movements, loss of body functions, and loss of consciousness. Witnessing a seizure, especially in a child, can be a frightening event. Your reaction and response can help keep the child safe and comfortable until the seizure has ended or is controlled by medical intervention.

If your child has a condition that makes them more likely to experience seizures, it is important to be prepared if a seizure occurs. In this guide you will find resources designed to help keep a child in your care safe during a seizure. The resources in this guide are not meant to replace medical advice or consultation.

What does a seizure look like?

Not all seizures are the same — there are many different types of seizures, with many different causes. Most seizures fall into one of two broad categories: focal onset or general onset seizures.

• Focal onset seizures are limited (or focused) to just one part of the brain, and the symptoms of focal seizures depend on the part of the brain where the electrical disruption occurs. For example, if the part of the brain that controls movements in a person’s left arm has an electrical disruption, their left arm may twitch or move on its own. These are sometimes called partial seizures because the symptoms may go away quickly and it may take multiple episodes to realize that seizure activity has occurred. Learn more in this article from Nemours, Kid’s Health.

• General onset seizures involve a disruption or change in electrical activity that affects the whole brain. The person experiencing this type of seizure may lose consciousness, have major uncontrolled movements, and lose control of body functions. This type of seizure is sometimes called a tonic-clonic seizure, and was commonly called a grand mal seizure in the past. Learn more in this article from Nemours, Kid’s Health.

• There are many sub-categories of seizures. To learn more about different subtypes of seizure activity and other terms related to seizures, visit this guide from The Epilepsy Foundation.

Seizure First Aid & Safety in the Moment    

If a child in your care has a seizure, or if you happen upon a person who is experiencing an absent seizure (where they are unconscious and unable to speak for themselves), the following actions can help to keep that person safe during the seizure. These recommendations come from a variety of medical resources including the Seizure First Aid guide from the Centers for Disease Control and Prevention (CDC). Stay calm, ask yourself the following questions and take the following actions if you believe you are witnessing a seizure.

• Is the person in a safe position? If a person begins to seize while standing, try to get them to a safe position, lying on the ground. If they are in or near water, move them away from the water or help place their head in a position where they are unlikely to breathe in any water. Move broken glass, sharp or unsafe objects away from the person. Roll them on their side to fully open their airway. Do not hold them down or attempt to restrict their movements. Doing so could injure them, or you.

• Is there anything in their mouth? If the person was eating, drinking, chewing gum, or had anything in their mouth at the time the seizure started, try to safely remove these items to prevent choking. Do not pry their jaw open, or shove anything in their mouth. Once the seizure passes do not offer food or water until they are fully alert and able to make their own decisions (a second seizure could occur, and you want their mouth to be clear if it does).

• Are they wearing a medical alert accessory, carrying a phone or wallet with an identification card, or is there a person who knows them nearby? Medical treatment for a seizure depends on whether or not this is a person’s first seizure, and if they already have a diagnosed disorder that makes them more likely to have a seizure. Asking a companion or seeing a medical alert accessory may help you to know more about the person you are assisting.

• How long has the seizure been going on? It is important to use a watch, timer, or other clock to record the amount of time a person spends seizing. As soon as possible, ideally right when the seizure begins, start a timer and be prepared to share this information with the person when they wake up, or with first responders.

• Do they need CPR? It is very rare for a seizure to cause a person’s heart to stop, or limit their ability to breathe. It is unlikely that they will need CPR following a seizure. If you are certified in CPR perform an assessment to see if it is needed.

• Should I call 911? Seizures can be frightening to witness, but not every seizure requires a emergency response or a trip to the hospital. You should call 911 in the following situations involving a seizure.

  • This is the person’s first seizure.

  • The person remains unconscious or has trouble breathing after seizure activity ends.

  • The seizure lasts longer than 5 minutes.

  • Another seizure occurs shortly after the first seizure stops.

  • The person has suffered a serious injury during the seizure.

  • The seizure occurs in water.

  • When in doubt, it is ok to call 911 if a person in your care is experiencing a seizure and cannot speak on their own behalf.

Preparing for a Seizure

If a child in your care has been diagnosed with a condition or disorder that makes them more likely to have a seizure, use the following resources to help you, your child, and your child’s secondary caregivers, teachers and coaches prepare for the possibility of a seizure.

• Work with your child’s medical care team to create a seizure action plan, using this template from The Epilepsy Foundation. Share this action plan with your child’s school leadership, teachers, and coaches, and print copies for your child to take to sleepovers or playdates with their friends.

• Consider acquiring a medical alert accessory for your child to wear or carry that identifies their medical condition and can lead a first responder to their seizure action plan.

• Provide this seizure and epilepsy education resource kit from the CDC and this guide from The Epilepsy Association to your child’s school. These resources can help them to be prepared if any student experiences a seizure.

• The Epilepsy Foundation has a suite of tools and resources for individuals who are prone to seizures. On this page you'll find a seizure diary app to help log seizure activity and events, lists of devices and medications that can help control seizures or improve quality of life for individuals who suffer from seizures, and a variety of social support resources.

As a Certified Child Life Specialist (CCLS), I have had the distinct honor of working with hundreds of families as they cope with illness, hospitalization, and trauma. In the pediatric hospice setting my role is to help patients navigate the end of a child’s life, and empower families and children as they have difficult conversations and a wide range of emotions.

Deciding when and how to engage with hospice services can be overwhelming. This guide includes resources that you may find helpful if your child’s medical team has mentioned hospice as a possible next step in your child’s care.

What is pediatric hospice care?

Pediatric hospice is a service provided to children who are terminally ill and considered to be close to the end of life. Typically, it is a service used by families with a child who has a life expectancy of less than 6 months. However, in many cases it is difficult to predict outcomes, so hospice programs often have the flexibility to extend services as needed.

Hospice care is recommended when curative treatments are no longer available or practical, and enhancing quality of life takes priority over attempting to extend the amount of time a seriously ill child may live. Hospice care is family-centered and interdisciplinary, meaning patients and families receive care for physical, emotional, social, and spiritual well-being. These services are typically extended to the whole family, including any siblings who may need support throughout the process. Hospice services can be provided in-home so that families may remain together and children can be in an environment that is familiar to them, or in a hospice facility if the family prefers. When hospice begins the family will establish goals related to providing comfort, enjoyment of life, and pain management, allowing families to focus on making memories and being present with their child.  

Who is part of a pediatric hospice care team?   

Every program is different, so it is important to check with any hospice organization to learn more about their services, but typically, a pediatric hospice care team will include the following individuals.

• Doctors will oversee your child’s medical needs including decisions related to medications.

• Nurses and aides can provide direct care to your child including administering medication, bathing, changing clothing and bedding, feeding and more.

• Social Workers provide counseling and support to children and families. Their work includes helping identify appropriate resources and aids throughout the hospice journey.

• Child Life Specialists provide support to pediatric patients and their siblings to help them understand their diagnosis and process their feelings. They also engage families in legacy-building and memory-making activities.

• Chaplains of all denominations and religious affiliations provide spiritual support to children and families.

• Volunteers can provide respite for caregivers, play opportunities, and help for other needs.

• Family members including parents and siblings are a part of the care team and should participate in direct care as they are willing and capable. This is your time to be with your family and your loving care is important for your child.

Hospice Care, Concurrent Care & Palliative Care

While some use the terms interchangeably, hospice and palliative care are different. Palliative care is a support that can be added to a treatment plan at any time after diagnosis, while hospice is focused on end-of-life care. The two types of treatment utilize many of the same practices, but are applied at different times during a child’s illness. To learn more about pediatric palliative care, check out this Pediatric Palliative Care resource guide.

Concurrent care allows children to continue being treated by their primary medical teams and even pursue curative options while also receiving hospice. Any child under the age of 21 who is eligible for Medicare or the Children’s Health Insurance Program (CHIP) is eligible for this type of care. Ask your doctor of receiving palliative care alongside their other medical treatment may be right for your child as a next step before making a decision about pursuing hospice care.

Helpful resources

• The National Hospice and Palliative Care Organization helps families with general information about hospice care to help in making informed decisions. They also help families interested in care find a program in their area.

• When searching for the right fit for your family, you may meet with multiple hospice providers. The Mayo Clinic and Medicare both offer lists of helpful questions to ask during this process.

• The Courageous Parents Network is a non-profit dedicated to empowering families of children with serious illnesses. Their library has stories from families who have experienced hospice care, and other resources that may be helpful.

• When a child dies the whole family needs support. The Compassionate Friends is a non-profit organization with chapters in all 50 states that connects families to bereavement resources.

• The Dougy Center focuses on childhood grief, with resources that might come in handy when talking with your children about death.

• Support Now is a wonderful resource that allows family and friends to offer support during hard times. It lets your community be there for you in so many different ways, without overwhelming your already overwhelmed life.

• The Pediatric Hospice Care support pathway on RedTreehouse.org has additional resources that may be helpful to you and your family.

Children’s Books

One of the most relatable and effective ways to connect with children is through books. There are many amazing books to help kids cope with the fear and grief that often surrounds the hospice experience. These are just a few of my favorites. If you make the decision to engage in hospice care for your child, as their team if they have any book recommendations.

Reading books on challenging topics can be overwhelming and emotional. Remember that it is ok, and may even be helpful for children to see your emotions as it reminds them that their own emotions are normal and healthy. If you would prefer to have someone else read these books with you and your children, ask your hospice team to read with you or watch a recorded reading (links to YouTube recordings are included where available).

• The Invisible String (ages 4-8), by Patrice Karst, focuses on grief, loss, and separation with a reassuring and gentle touch. 

• The Memory Box (ages 4-10), is a story about loss that speaks directly to memories and the many ways we can keep memories alive. It has a great call-to-action for children and families to create memory boxes, while helping to identify important feelings.

• Cinnamon Roll Sunday: A Child’s Story of Anticipatory Grief (ages 8-11) by Jennifer L. Allen, discusses the difficult topic of anticipatory grief. This is a great story for any family unsure of how to approach the uncertainty of illness and having difficult conversations about the future.

• I’m On Hospice: A Children’s Book for Processing and Coping with a Terminal Illness (age 5+), by Sydney Crane, is a great tool for introducing hospice care to children. It opens the door for conversation and discussion around terminal illness, and what kind of care children can expect.

• This Book is For All Kids, But Especially My Sister Libby. Libby Died (ages 5+), by Jack Simon, is the story of 5-year-old Jack who had a lot of questions and observations when his sister died. His mom kept a diary of them, which later became this book. It is such a special book that really captures what grief looks like and reminds children and families that they are not alone in these thoughts.

• I miss you: A First Look at Death (ages 4-8) does a wonderful job of explaining death to younger children. Written by a counselor and psychotherapist, it also covers feelings and ways to cope with grief and loss.

Books for Caregivers

• Through a Child’s Eyes (recommended for caregivers) by Karen Longstreth, is for any caregiver struggling with what to say to their children during loss and grief. The author discusses difficult topics such as death, organ donation, cremation, burial, and cemeteries in ways that make them developmentally appropriate for children.

When a child receives a new medical diagnosis, the parenting role can change dramatically. Balancing meal prep, soccer games and dentist appointments becomes even more challenging when ongoing medical needs are introduced. Going from parent to primary medical caregiver can also be daunting. Thankfully, there are resources available to support you so that you can focus on your family.

Getting Organized

Creating an organization system, whether it’s a physical binder or electronic file, will help you to recall and share pertinent medical information with members of your child’s care team. Staying organized from the start will save you time and energy as needs arise in the future. These resources will help you manage paperwork and information related to your child’s diagnosis and care.

• This article from the Child Mind Institute is a great starting point if you are not traditionally an organized person. “Organization is not a superpower, it’s just a set of strategies and skills you don’t have yet,” the author reminds us. Getting organized is all about finding what works for you, and sticking to it.

• This article from John’s Hopkins Medicine includes a list of medical documents that you may want to consider keeping in your personal records. Most hospitals offer electronic communication systems like MyChart that can help with some of the organizational burden.

• Healthspek is a digital tool that can help you gather all of your medical records in one place. This can be especially handy if you are coordinating information across multiple medical systems or networks.

• As you organize your medical tools you may want to take the opportunity to get your other documents and personal affairs in order.

  • Everplans and Capzule are digital tools that can help you organize everything from insurance policies, to personal identification documents, and more.

  • If you prefer paper based organization consider The NokBox which offers templates and prompts that can help you gather important information.

Communicating with friends & Family

Medical parents are the first ones to get news and updates related to their child’s medical condition. Your friends, extended family, and general support community will want to be informed and understand how to best support you. There are tools available to help you communicate information about your family, and help you coordinate support needs.

• Family Wall is a site that helps families and extended families organize day-to-day activities and communications. You can assign jobs, put up to-do lists and even chat all within their secure platform.

• CaringBridge is a personal journaling/blogging site that you can use to share your story openly, or with a select audience. The site has tool integrations in their resource section that can help you set up fundraisers and support calendars that link directly to your story.

• Meal Train allows you to set up a calendar and request help in coordinating and funding meals from your support community.

Keeping your support network updated is important for many reasons, but there are a few things you will want to keep in mind as you navigate communication related to your child’s illness.

• Social media and other digital communication tools can make connecting with your support network easy and efficient. However, it is important to remember that anything you share in even private and secure digital spaces can potentially be tracked down and used in unintended ways by individuals with sinister motives.

• Consider your child’s future wishes before posting anything on social media. Once a photo or story is out there it cannot be taken back.

• Communicating with friends and family may not be high on your list of priorities, and that is ok! You have the power to choose how and when to share information, and you do not have an obligation to open your family’s private life to others. If you feel inclined to share updates with your support network, but feel overwhelmed by the experience, designate a trusted friend or family member to communicate on your behalf.

Care for the caregiver

Parenting is hard enough when your children are healthy. When you add all that comes with caring for a medically complex child it may seem impossible to find time to care for yourself. Reminding caregivers that they need to take care of themselves is easy, but being a caregiver and following through with self care is extremely difficult. When you finally catch your breath in the aftermath of any medical crisis, consider some of the following tips and resources to help you build a plan for self care.

• Take a self care assessment like this one, just to check in and see how many of your basic needs are being met. Remember that self care is more than pampering and relaxation, it includes those routine maintenance things that all of our bodies and minds need.

• Get a baseline for your own health, both mental and physical, by making an appointment with your primary care doctor. If you are struggling to manage your own health while caring for your child, ask your doctor if you can schedule additional check-ups beyond a yearly physical.

• If you are married or otherwise partnered pursue relationship counseling or support before you find yourself in crisis. Couples that have a child with a severe medical challenge or disability have a much higher divorce rate. This article by from Boston Children’s Hospital includes tips from couples who have been where you are now. Be proactive and look for ways to support your relationship goals.

Ask for Help

It can be uncomfortable to ask for help, but your family and friends will need guidance on how best to support you.

• Ask and ask again for support from your medical care team and the social support professionals who are connected with your case. Be specific when you know you have a particular need, and do not hold back.

• Use family coordination tools to ask for and coordinate support. Ask a trusted friend or family member to coordinate on your behalf if you are overwhelmed by your other caregiving related tasks.

• Consider palliative care if your child is facing a serious medical challenge. This type of care is often misunderstood to only be for those facing the end of their life. This article can help you learn more about how palliative care can help strengthen your support network.

• Seek out others who have faced a similar diagnosis as you build your support community. These Red Treehouse guides may be helpful in this process.

  • Parenting in the PICU (Pediatric Intensive Care Unit)

  • Finding Support and Information When Your Child Receives a Rare Diagnosis

• Find and connect with your local Ronald McDonald House Charities® chapter to find support in your local community. Programs vary by location.

Having a child with a disability, a new medical diagnosis, or frequent medical care needs often results in added and unexpected costs for a family. Dealing with these financial burdens can make an already difficult situation even more challenging, which is why many organizations have made it their mission to help bridge the gap for families in need. In this guide you will find a list of organizations that may be able to help should you find yourself in need of monetary resources to fully fund or reduce the costs associated with medical care, travel, and basic living expenses. This is just a starting point and not a comprehensive list of all available funding sources. In addition to perusing this guide you may want to consider seeking help from organizations that provide resources just for your hometown, county, or region, and may find even more support by conducting additional searches for specific medical diagnoses, disabilities, or healthcare needs. If you need help finding additional resources, or assistance in completing applications, ask your medical team if they can recommend a social worker to help you through the process.

Tips for applying for grants and funding

• Before submitting an application, read through the materials provided by the organization on their website. Make sure that you meet all of the application requirements and that you are applying within any specified or designated application periods.

• Talk to your child’s physician or medical team before pursuing funding for durable medical equipment so that you can be specific in your request and avoid acquiring equipment that may not fit your needs.

• If you receive funding or support be sure to send thank you letters and, if possible and appropriate, pictures of your family. The staff and volunteers of the organization will appreciate seeing how their efforts touched your life, and if you are comfortable allowing your story to be shared you may even be able to help them to raise additional funds to support more families in need.

• It is not uncommon for an organization to temporarily suspend a program for a variety of reasons. Should you find that a particular resource is unavailable make a note for yourself to check back at a later date.

GENERAL Grant programs for medical expenses & equipment

• The Oracle Health Foundation offers grants for medical treatment, transportation, vehicle home modifications, and other expenses.

• Friends of Disabled Adults and Children offers free and low-cost home health-care equipment.

• The Giving Angels Foundation assists children with medical challenges special needs throughout the United States (under 21) from lower income families.

• United Healthcare Children’s Foundation Grant helps families pay for medical expenses.

• Wheelchairs 4 Kids provides wheelchairs, home and vehicle modifications as well as other assistive and therapeutic devices for children that have limited mobility.

• Modest Needs Foundation is a non profit that exists to responsibly provide short-term financial assistance to individuals and families in temporary crisis, stop these at-risk households from slipping into the cycle of poverty, despite the burden posed by an unanticipated, emergency expense, and to promote compassion and generosity on the part of individual persons living in the United States and Canada.

Prescription Medication and coPayment assistance

• HelpRx has a database of drug discount coupons to download and print and offers a prescription discount card.

• RxAssist has a database of programs that offer discounts on prescription drugs. You can search the database by pharmaceutical company or type of drug.

• NeedyMeds helps people pay for expensive generic medications.

• The Assistance Fund gives financial help to people with certain conditions for copayments, premiums, and more.

• The PAN (Patient Access Network) Foundation helps underinsured people with life-threatening, chronic and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.

• CancerCare Copayment Assistance Foundation helps people with chemotherapy co-payments.

• HealthWell Foundation helps people who have long-lasting or life-altering diseases cover prescription co-payments and medical insurance payments.

• National Organization for Rare Disorders (NORD) gives prescription payment and co-payment help to people who have certain rare conditions.

• Patient Advocate Foundation’s Co-pay Relief Program offers prescription co-payments and insurance deductible help for people who have certain conditions.

Transportation and medical travel Help

• Children’s Flight of Hope, Inc. is a nonprofit organization that gives children with critical medical needs free air transportation to and from a medical facility, if they are going for treatment.

• Corporate Angel Network arranges free plane transportation for cancer patients and bone marrow donors going to or from recognized cancer treatment centers.

• Mercy Medical Angels helps transport people in medical and financial crisis by connecting them with people or organizations that give free or low-cost patient air transportation.

• Miracle Flights for Kids gives free medical transportation by air to families who need necessary medical treatment out of their home state.

• The National Children's Cancer Society provides the financial assistance needed to ensure a child with cancer gets the treatment they need – whether it is across town or across the country.

• Operation Liftoff will provide air travel for a child younger than 18 years old and 1 parent. Any child 3 to 18 years old who has a life-threatening illness and has not received a wish trip from another organization can apply to get a dream trip too.

Local Chapters of National Organizations

There are many national service or charitable organizations that give help in local communities or cities through smaller clubs or chapters. Each local area manages its own programs, grants, and gifts. We recommend that you contact your local chapters of the organizations listed here, to see if they can help you.

• Easterseals offers a variety of services to children who have disabilities or special health care needs.

• Elks Lodge might give scholarships or other types of help.

• Kiwanis are groups that do community service and raise funds for many children’s causes.

• Lions Clubs might give out grants or other financial help for assistive technology and other needs.

support for specific medical conditions

• Association of Blind Citizens Assistive Technology Fund offers grants for assistive technology and software for individuals with visual impairments.

• American Council of the Blind offers scholarships for college or job training programs, and sometimes offers grants for assistive technology for people who have vision impairments.

• Sight for Students offers free vision exams and glasses. If you meet Sight for Students’ income rules, you can talk to your child’s school or another participating community organization to get a voucher for an exam and glasses.

• Muscular Dystrophy Association offers services and support to children with muscular dystrophy.

• Alyssa V. Phillips Foundation supports individuals with Cerebral Palsy (CP) with a focus on assisting children with CP, their families, or any individual impacted by CP in maximizing independence.

• Family Reach is a national organization dedicated to eradicating the financial barriers that accompany a cancer diagnosis.

• Gwendolyn Strong Foundation works to fill in the gaps needed to create real change & build a more inclusive future for those with disabilities.

• The HIKE Fund works with families who qualify to provides devices for children with hearing loss from newborn age up to twenty years old.

• Holton’s Heroes provides support, information, and rehabilitative devices for children and their families affected by a post-birth brain injury.

• Keep Punching, The Glenn Garcelon Foundation, Mission4Maureen, and the The Matthew Larson Foundation help families who have a loved one diagnosed with a pediatric brain tumor.

• The Kelly Brush Foundation inspires and empowers people with spinal cord injuries to lead active and engaged lives.

• The LGS Foundation's mission is to improve the lives of individuals affected by Lennox-Gastaut Syndrome (LGS) through research, family support programs, and educationThe McLindon Family Foundation.

• Miracle-Ear Foundation helps to provide hearing aids and other assistive technology devices to individuals who will benefit from them.

• Molly Bear Foundation aims to provide supplemental financial assistance to families raising children with Trisomy 18.

• Small Steps in Speech provides grants on behalf of children with speech and language disorders for therapies, treatments, communicative devices, and other services.

• The National Gaucher Foundation - CARE Program provides financial assistance for people with Gaucher disease and their families through the CARE and CARE+ Programs.