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Nine-year-old Haley Hilt is one of a growing group of patients with CDKL5 epilepsy who are helping advance our knowledge of this disorder. Read more on our science blog, Vector.
Children with CDKL5 disorder can access specialized care from programs throughout Boston Children’s Hospital.
Children with CDKL5 disorder have early-onset seizures, developmental delays, low muscle tone, frequent vision difficulties (cortical visual impairment) and various additional medical conditions. These may include sleep and behavioral problems, abnormal movements, swallowing difficulties, constipation, reflux, scoliosis and other complications of low muscle tone.
Seizures are often difficult to control (refractory). Seizure types may include infantile spasms. Patients frequently have a mix of focal and generalized seizures over time, and often seizures with multiple distinct phases.
During our monthly CDKL5 clinics, children can meet with a variety of specialists to develop a personalized treatment plan to guide their local educational, therapeutic and medical teams. We can also help in assessing genetic test results and diagnosis when appropriate.
Though CDKL5 is a distinct disorder, patients have symptoms in common with other genetic epilepsies and neurodevelopmental disorders such as Rett syndrome. We work in parallel with Boston Children’s Rett syndrome clinic and the Epilepsy Genetics Program.
A secondary purpose of our clinic is to gain a better understanding of CDKL5. We are collaborating with other CDKL5 Centers of Excellence and IFCR for a clinic-based research project that will allow us to learn by following patients and tracking their progress over time. Our goal is to have our research enhance clinical care for children with CDKL5 mutations.
Please give us a call! From there, we can determine which specialists are most appropriate for your child to see. We then ask that you provide your child’s medical records and complete an intake form so we can best prepare for your child’s visit.
Please call our clinic coordinator, Allison Robinson at (617) 355-8994 to arrange your visit.
Medical records may be sent to:
Boston Children’s Hospital
300 Longwood Avenue, Fegan 11
Attn: Allison Robinson
Boston, MA 02115
Fax: (617) 730-0279
We hold clinics once per month on the third Thursday and Friday of the month. Children usually spread their visits over two days, but some can do them in one day depending on the appointments needed. Your child will see each of the necessary specialists separately, but all in one building.
Some children may require more frequent follow-up visits. Families living far from Boston can use clinic visits as consultations and return every six to 12 months, continuing regular care with their local team. Our team will work with your family to determine the best visit schedule for your child.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”