Hear from Chris, parent of a 10 year old
Going to the
Emergency Department
with a Child that has Intellectual
Developmental Disorders
with a Child that has Intellectual Developmental Disorders
Going to the emergency department (ED) can be stressful, especially for children with intellectual developmental disorders (IDD) and their families. This infographic has information to help prepare families and shares tips that might make a visit to the ED less stressful.
Every visit to the ED can be different. With every visit, you’ll learn more about what you and your child need when it comes to healthcare.
When to go to the emergency department
The ED is where people go for urgent care related to their health. Visit your nearest ED if your child has any of the following symptoms:
Listen for a wheezing sound, like a high-pitched whistling, or breathing that is very loud or grunting, and look for in-drawing or sucking in of the skin around the neck and between ribs.
If your child is very sleepy, hard to wake, or not responding.
When the brain has a burst of abnormal electrical activity. This can cause a person to lose control of their body or have unusual movements, like shaking or being stiff. They can also make people feel confused, stare blankly, or not respond for a short time.
No tears when crying, dry mouth or more thirsty than usual, dark yellow pee, no pee or fewer wet diapers.
Or blue or gray fingernails and fingertips
Cool to the touch, or looking paler than normal.
Especially if your child can’t drink without vomiting.
Listen for a wheezing sound, like a high-pitched whistling, or breathing that is very loud or grunting, and look for in-drawing or sucking in of the skin around the neck and between ribs.
If your child is very sleepy, hard to wake, or not responding.
When the brain has a burst of abnormal electrical activity. This can cause a person to lose control of their body or have unusual movements, like shaking or being stiff. They can also make people feel confused, stare blankly, or not respond for a short time.
No tears when crying, dry mouth or more thirsty than usual, dark yellow pee, no pee or fewer wet diapers.
Or blue or gray fingernails and fingertips
Cool to the touch, or looking paler than normal.
Especially if your child can’t drink without vomiting.
You may also need to take your child to the ED if they are showing concerning behaviours.
What to Expect at the Emergency Department
Hear from Asha, parent of a 6 year old
It might be helpful for you and your child to talk about what might happen at the ED. Our infographic about what to expect at the ED might help. The first stop at the ED will be at the triage station. This will help the nurse understand how sick your child is and how urgent their healthcare needs are. You may have to wait in line before you talk to the triage nurse.
Going to the ED for a child with an IDD can be challenging. There might be long wait times before you see a healthcare provider. The ED can be overstimulating. There are a lot of sounds and bright lights. There are usually a lot of people, and sometimes children who are upset. Remember: it’s normal to feel stressed and overwhelmed when your child is sick or needs emergency care.
Managing Behaviours of Concern in the ED
Hear from Minha, parent of a 5 year old
If you are at the ED because of your child’s behaviours, you may have to wait longer than other people.
It might help to let the nurse know about your child’s IDD. Healthcare providers will be working to treat the most serious needs of your child. They may not be treating your child’s behaviours of concern. Remember that they are experts at treating people with emergency medical situations. They may not have training specific to your child’s behaviours or IDD.
It’s important to share information about how to communicate with your child. You can also share what might make your child upset and what might help calm them.
Staff might use medicine to help manage your child’s pain and behaviours. For example, if your child is aggressive, a calming medicine might be used. This would help healthcare providers treat your child’s other symptoms.
Your Role as a Parent
Your voice matters
Hear from Robyn, parent of a 17 year old
As you care for your child and have experiences with the healthcare system, you will learn more about your child’s needs. You will also learn the best ways for you to communicate with the healthcare team. You might have tips for them about how to communicate with your child or care for them. It’s ok to share those tips with the healthcare team. It’s also ok to ask ED staff to contact your child’s primary care provider about your child’s medical needs.
Remember, you are the expert in your child’s health. You know your child best. You are often the main coordinator of your child’s health. And you know the many providers that are a part of your child’s healthcare team outside of the ED. Speaking up on behalf of your child helps make sure they get the best care possible. Advocating for your child’s needs isn’t always easy or comfortable, but you have a very important role in your child’s care.
Questions to Help You Prepare for a Visit to the Emergency Department
Thinking through these questions might help you and your child have a more positive experience at the ED.
Thinking through these questions might help you and your child have a more positive experience at the ED.
What would help your child have a positive experience at the ED?
- When your child was at the ED or in the doctor’s office in the past, were there any problems? Do you think there will be any problems at this ED visit?
- Are there healthcare staff at the ED you are visiting who have experience with children who have the conditions your child has?
- Do you prefer if healthcare providers speak to only yourself or your child, or both of you?
- Do you prefer to stay in the room with your child while any procedures are happening?
- What can help calm your child? Do you have toys, blankets, or other things with you that might help calm them?
- What upsets or agitates your child? Are there any early warning signs when they are getting upset? Are there triggers that can be removed?
- Is your child sensitive to touch, sound, light, or movement?
- What symptoms are bringing you into the ED?
- Has there been a recent change in your child’s behavior? What is it?
- Have there been any recent and major life changes for your child?
- How does your child communicate when they are in discomfort or pain?
Tips from Other Parents
Follow-up
If your child was sent home from the ED, they should have a follow-up appointment with a healthcare provider. Ask the ED healthcare team about who your child should see, and when they should see them. If you don’t already have community supports, ask the ED healthcare team. They might know what supports are available in your area.
Extra Resources
This infographic was brought to you by ECHO & ARCHE
This research was funded by the Stollery Science Lab Distinguished Researchers program through the Stollery Children’s Hospital Foundation and the Women and Children’s Health Research Institute.
