What is a healthcare team?
A healthcare team is made up of different specialists. They will monitor growth, help manage complications, and give support.
Your child’s team may include:
Managing Achondroplasia
Lawson, age 4, living with achondroplasia, and his mom and dad.
Your child’s care journey
Establishing a diagnosis of achondroplasia is often one of the first steps in a child’s care journey. It helps families understand what to expect, access the right medical support, and connect with specialists who can guide them through their child’s growth and development.
From infancy through adolescence, parents will work closely with healthcare professionals to guide crucial care decisions for their child with achondroplasia.
A child’s care pathway may include:
Infancy (0-12 months)
- Regular checkups with growth tracked on condition-specific charts
- Scans to check for fluid buildup in the brain (hydrocephalus) or pressure on the spinal cord
- Sleep study to check for apnea
- Review for frequent ear infections or hearing loss
Childhood (6-12 years)
- Annual reviews with core healthcare team
- Monitoring of leg alignment and spine health
- Repeat sleep study if symptoms return
- Support for emotional and social development
- Neurology follow-up as needed
Early childhood (1-5 years)
- Monitoring of growth, mobility, and developmental milestones
- Ongoing neurology and orthopedic assessments
- Physical or occupational therapy to support motor skills
- Hearing and dental checks as needed
Adolescence (13-18 years)
- Screening for spinal stenosis and joint pain
- Discussion of treatment options, including surgery
- Final height
- Transition planning to adult care
Your child’s healthcare team will be made up of different medical specialists.
Early detection of new or worsening symptoms can help the healthcare team provide the right support at the right time.
Questions to ask your child’s healthcare team
It’s important to ask questions and explore new possibilities. You know your child best, and your healthcare team can help you understand if your child’s current care is meeting their needs.
You may want to know:
What does this diagnosis mean for my child's growth, health, and development?
What tests or imaging will be needed? What will they help us learn?
Which specialists will be involved in my child's care? What does each one do?
How often will we need to see the healthcare team? What will those visits involve?
Are there any treatment options we should be aware of?
Where can we find support and connect with other families in similar situations?
Early signs of complications may not always be obvious. Staying engaged with your child’s healthcare team is essential to help ensure early detection and the best long-term outcomes.
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