Post Intensive Care Syndrome (PICS) in Pediatric Patients
Is your child an intensive care unit (ICU) survivor? Do you notice that your child isn’t quite back to normal? This is common after a child is very sick and requires ICU care.
What is PICS?
- Post-Intensive Care Syndrome (PICS) is a term used to describe the health problems your child may experience after being in the ICU.
- Adults and children may develop new health problems after being very sick that continue even after they are discharged from the ICU and hospital.
- These health problems are usually related to physical strength, coordination, thinking, and mental and emotional health.
Physical Issues
Symptoms
The following symptoms are not uncommon in children after they have been sick in the ICU:
- Weakness
- Difficulty with balance and coordination
- Temporary loss of previously normal developmental skills
- Fatigue or feeling tired after doing simple things like feeding, sitting up or walking a few steps
- Frustration or irritation with previously easy tasks like brushing teeth or tying shoes
Some children who were on the breathing machine (ventilator) may have difficulty with bottle feedings, drinking or eating food, or speaking like they did prior to getting sick.
While your child is in the hospital
Physical, Occupational, and/or Speech Therapists may help your child to regain their strength and abilities that they may have lost while being very sick.
- Physical Therapists are specialists in helping the body make large movements, get stronger, and have better coordination.
- Occupational Therapists are specialists that help your child perform everyday activities using small movements (example: grasping something with 2 fingers).
- Speech Therapists are specialists that help your child with communicating, speaking, eating, and drinking.
The hospital team will assess your child and figure out who and what they need to help them once they go home.
When your child goes home
- Most children will be able to go home and continue to work with Physical, Occupational, and/or Speech Therapists in an outpatient setting.
- Some children will need therapy to recover at a special type of hospital called a rehabilitation facility.
What can parents do?
- Make an appointment with your child’s pediatrician to help with ongoing care of your child once they are discharged from the hospital.
- Feel empowered. If you are concerned about your child’s recovery, then call your pediatrician.
- Be patient. It may take your child weeks, months, or even longer to make their expected recovery.
Thinking or Learning Issues
Symptoms
The following symptoms are not uncommon in children after they have been sick in the ICU:
- Difficulty paying attention
- Taking a longer time to figure out a problem or learn something new
- Difficulty remembering things
While your child is in the hospital
There is no medicine that can prevent all thinking or learning problems after being very sick.
- Certain types of sedation or calming medicines may affect thinking while in the hospital. We are currently learning about the best sedation to give sick kids.
- We try to limit the amount of sedation medicines to what your child needs to be comfortable and safe.
Some children will experience delirium while in the ICU.
Download Family Delirium Handout
- Delirium is a temporary condition where the mind is not working normally. It can happen when children or adults are very sick.
- ~Patients with delirium are often confused and unable to pay attention.
- ~Some patients with delirium may seem sleepy even without sleep medicine.
- ~Other patients with delirium may be agitated and not comforted by their favorite “loveys” or family members.
- We monitor for delirium in your child while they are in the ICU.
- Delirium often gets better when we treat your child’s main illnesses (examples: infection, lung problems, heart problems).
Your child may work with a Speech Therapist, Psychologist, or Psychiatrist to help with thinking and learning problems.
When your child goes home
- Often issues with thinking or learning will improve with time. However, your child may still benefit from special assistance that you or the school can provide.
- Seek help from your child’s pediatrician, teacher or school counselor if you notice any of the following:
- ~A decline in your child’s grades or test scores
- ~Difficulty completing schoolwork in the usual amount of time
- ~Unhappiness with school when they have enjoyed it in the past
- ~More irritable or frustrated than usual
- Often tutoring or extra time to complete tasks at school can be very helpful.
- Some children will need even more specialized help or testing to work through thinking and learning issues.
Emotional or Psychiatric Issues
Symptoms
- Being in the ICU and very sick can be scary and challenging for anyone. Some children may experience seeing or hearing things that others cannot see or hear while they are sick in the hospital. One child’s response to these experiences may differ from another, but caregivers can help by being patient and providing reassurance to their child.
- Your child may experience emotional or behavioral changes such as:
- ~Scary thoughts about being in the ICU or hospital
- ~Difficulty falling or staying asleep
- ~Nightmares more often than usual
- Some children may have problems with anxiety, post-traumatic stress symptoms, or depression after being sick in the ICU.
While your child is in the hospital
- Delirium may look like emotional and/or behavioral issues. As a child gets better from their sickness, delirium should improve. Exercise and good sleep can help the brain recover.
Download Family Delirium Handout - Your child may be evaluated by the Psychiatry team to recommend therapies for delirium, anxiety and/or stress problems.
- Your child may work with a Child Life Specialist while in the hospital. A Child Life Specialist is trained to help children and families cope with the stress of an illness and hospitalization.
- Hospital Chaplains are available to support your child and family when appropriate.
- Hospital Social Workers will work with you and your family throughout your child’s hospitalization to overcome problems so that you can be involved in your child’s plan of care, have plans for follow-up when working towards discharge home, and find resources to help you.
When your child goes home
- Watch your child for the following signs of ongoing emotional or behavioral problems:
- ~Being fearful or worried, unable to be consoled or comforted appropriately
- ~Newfound fear or anxiety of being separated from parents or family members
- ~Persistent nightmares or flashbacks of the ICU
- ~Poor sleep
- ~Overly emotional behavior
- ~Changes in mood, including sadness and loss of usual playfulness or happiness
- If you notice your child is having any of the above issues, talk to your pediatrician about what to do. This may include seeing a Psychologist, Psychiatrist, or Counselor.
- Consider allowing your child to talk with family, friends, teachers and spiritual or religious mentors about their feelings and fears.
PICS-Family
Family members of children or adults cared for in the ICU can also experience PICS.
Common symptoms of PICS-Family include anxiety, post-traumatic stress disorder, and depression.
If you are experiencing difficulties, please seek help for yourself.
- Talk to your healthcare provider.
- Find support from family, friends, spiritual or religious groups.
- Consider seeking help from a counselor, psychologist, or psychiatrist.
Siblings of sick children often experience fear, anxiety, guilt, and feelings of detachment.
- While your child is in the hospital, consider working with a child life specialist at the hospital on ways to explain your child’s illness to siblings and how to help siblings cope.
- Talking with a hospital chaplain or other community spiritual or religious mentors may give your child another way to express their concerns or feelings in a safe manner.
- Siblings may benefit from keeping a routine as much as possible and upholding normal boundaries and expectations for their behavior.
- Talk to your pediatrician - siblings may also benefit from support services like counselors or psychologists.
The ABCDEF (A2F) Bundle
The A2F Bundle is an approach we use to discuss issues surrounding pain, sedation (calming medicine), need for the breathing machine, delirium, exercise, sleep, and family involvement while getting your child better.
While your child is in the ICU, we may use parts of the A2F bundle to provide the best care possible. Some research has shown the A2F bundle may help with body/brain/mind recovery. Despite this PICS may still develop.
Here are parts of the A2F bundle that we may discuss in the ICU.
Assess, Prevent, and Manage Pain
We use specialized tools to assess pediatric patients for pain. Pain can be monitored in patients with a breathing tube in place and in the very young.
Both Spontaneous Awakening Trials & Spontaneous Breathing Trials
We try to limit the amount of sedation (calming medicine) to only what a child needs while on a breathing machine. When a child requiring the ventilator for breathing is getting better, we adjust the machine to encourage them to breath on their own.
Choice of Analgesia and Sedation
We have a special plan for sedation in the pediatric ICU to help us avoid too much sedation or too little sedation.
Delirium: Assess, Prevent and Manage
We created the first tool to assess children for delirium several years ago. The nurses use this tool each shift in the ICU to check your child for delirium.
Early Mobility and Exercise
We have an Early Mobility plan with our Physical and Occupational Therapists to get your child using their body as soon as possible. This may help your child get better sooner and even sleep better at night.
Family Engagement and Empowerment
We hope for and encourage family involvement in all aspects of care in the pediatric ICU. You know your child best and families are important to help children get better.
Further Advances
We continue to work towards discovering new ways to best care for children in the ICU
Some of our active areas of research involve:
- Determining the best sedation medicine for children requiring the ventilator for breathing.
- Working to understand how delirium in the ICU may affect a child’s brain in the future.
- Learn more about mini-MENDS
- Discovering ways that early exercise can be helpful for children in the ICU.
- Trying to increase sleep in the pediatric ICU and studying how sleep may help a child’s brain recover from being sick.
