Neuro-disability nutrition in teens

Puberty affects nutrient needs in teens with neuro-disabilities just as it does in typically developing teens, but the specifics can be different. Teens with limited mobility may have lower energy needs but still have the same micronutrient requirements for puberty and bone development. Teens on certain medications may have altered appetite or metabolism. Teens with cerebral palsy may gain weight differently during puberty than expected.

Accurate assessment of energy needs in neuro-disability is more complex than in typically developing teens. Standard equations often overestimate or underestimate needs depending on the condition and level of mobility. I use clinical assessment, growth data, and dietary analysis together to get a realistic picture of what each individual needs.

The transition from paediatric to adult services is a significant event for families managing complex nutrition. Paediatric services tend to be more coordinated, more family-inclusive, and more experienced with childhood-onset conditions. Adult services may be less familiar with the specific condition, less accustomed to working with families rather than individuals, and organised differently.

Good transition planning, as outlined in NICE guidance, means starting early (ideally around 14 to 15), documenting the nutrition plan comprehensively, ensuring the teen (or their family and carers) understands the plan and can communicate it to new teams, and identifying who will provide dietetic input in adult services. I work with families to prepare for this transition and can provide continuity of care across it where needed.

The practical things that make transition smoother include a written nutrition plan, a clear supplement and medication list, growth charts, relevant investigation results, and a summary of what's been tried and what works. Having this documentation ready prevents the 'starting from scratch' experience that many families describe on entering adult services.

Bone health is a particular concern in teens with neuro-disabilities. Limited weight-bearing, vitamin D deficiency, calcium inadequacy, steroid use, and some anticonvulsant medications all affect bone density. Fracture risk can be significant. Proactive nutritional support for bone health, including adequate calcium and vitamin D as recommended by the NHS, is important and often underdelivered.

Weight management in neuro-disability is nuanced. Both underweight and overweight can be concerns depending on the condition, and the standard BMI-based approaches don't always apply. Individual assessment of body composition, growth trajectory, and functional impact guides the approach. I work closely with the wider team, physiotherapy, occupational therapy, and the medical team, to make sure the nutrition plan supports overall management goals.