Soon after diagnosis, children are usually referred for a number of important checks and assessments. These may include neurology, particularly to look at seizures or seizure risk, cardiology to check the heart, hearing and eye tests, kidney assessment, feeding support and a review of their overall development. These early assessments help build a clearer picture of your child’s needs and can guide the support, treatment and referrals they may need going forward. Kidney function should also continue to be monitored as your child grows, as ongoing checks can help identify any concerns early.

Children with WHS often benefit from early and regular developmental support. This may include feeding therapy, support with safe swallowing and nutrition, assistive communication, speech and language therapy, physiotherapy and occupational therapy. Many children will also need educational support that is tailored to their individual needs, whether that is through nursery, school, specialist provision or additional support plans. Early intervention can make a real difference, helping children build skills, confidence and independence at their own pace.

It is also important to add your child to the GP Learning Disability Register. This helps healthcare professionals understand your child’s needs and can make it easier for them to receive the right support when accessing healthcare. Being on the register may help your child receive reasonable adjustments, annual health checks and other support they are entitled to. It can also help ensure appointments, communication and care are adapted in a way that works better for your child and family.

GP Learning Disability Register:
https://www.england.nhs.uk/long-read/find-out-about-the-learning-disability-register/