Ohtahara Syndrome (OS) is a rare, severe epileptic encephalopathy that begins in the first few months of life. A triad of symptoms characterizes it:
Tonic spasms: These are sudden, brief stiffening of the body that can occur multiple times a day.
Burst suppression pattern on EEG: This is a characteristic pattern on an electroencephalogram (EEG), which is a test that measures electrical activity in the brain.
Developmental delay: Children with OS typically have delayed development in all areas, including motor skills, language skills, and cognitive skills.
The cause of OS is unknown, but it is thought to be caused by a combination of genetic and environmental factors. Some children with OS have underlying brain malformations or genetic mutations. Others may have experienced perinatal (around the time of birth) injuries.
There is no cure for OS, but treatment aims at managing the seizures and preventing complications. Treatment options may include:
Anticonvulsant medications: These medications can help to reduce the frequency and severity of seizures.
Vagus nerve stimulation (VNS): This therapy involves implanting a device that sends electrical signals to the vagus nerve. VNS can help to reduce seizure frequency and improve development in some children with OS.
Ketogenic diet: This diet is high in fat and low in carbohydrates. It can help to reduce seizure frequency and improve development in some children with OS.
The prognosis for children with OS varies. Some children may experience decreased seizure frequency and improved development over time. Others may have more severe seizures and developmental delays.
Seeking Diagnosis
If you are concerned that your child may have OS, it is essential to see a doctor for evaluation. Early diagnosis and treatment can help to improve outcomes for children with OS.
Ohtahara Syndrome is diagnosed based on the child's medical history, symptoms, and EEG results.
The prognosis for children with Ohtahara Syndrome is variable. Some children may experience a decrease in seizure frequency and improved development over time, while others may have more severe seizures and developmental delays.
Local Services
Here are some services available in New York City for children with Ohtahara Syndrome including:
Medical evaluation and diagnosis
Treatment with anticonvulsant medications, VNS, and the ketogenic diet
Surgical evaluation and treatment for children with underlying brain malformations
Developmental evaluation and therapy
Support groups for families of children with Ohtahara Syndrome
In addition to these hospitals, several other organizations in New York City offer services for children with Ohtahara Syndrome and their families. These organizations include:
The Epilepsy Foundation of New York: This organization provides education, support, and advocacy for people with epilepsy and their families. They offer a variety of programs and services, including:
Information and resources about Ohtahara Syndrome
Support groups for families of children with Ohtahara Syndrome
Advocacy for people with epilepsy and their families
Adapt Community Network: This organization provides services and support for people with cerebral palsy and other developmental disabilities. They offer a variety of programs and services, including:
Developmental evaluation and therapy
Family support services
Advocacy for people with disabilities and their families
If you are a parent of a child with Ohtahara Syndrome, please reach out to one of these organizations for more information and support.
Educational Needs
Children with OS may have various needs, so accommodations need to be tailored to the individual student. However, some general accommodations that may be helpful for students with OS include:
A quiet place to rest and recover from seizures: this could be a separate room in the classroom or a quiet space in the library.
Flexible scheduling to accommodate medical appointments and frequent breaks: this may involve allowing the student to leave class early, come in late, or take breaks throughout the day.
Modified assignments and assessments: this may involve reducing the required work, providing extra time to complete assignments, or allowing the student to complete assignments in a different format.
One-on-one or small group instruction: this may be helpful for students who need extra support with their academic work.
Assistive technology: this may include devices such as computers, speech-to-text software, and augmentative and alternative communication (AAC) devices.
Behavioral interventions: this may be necessary to help students with OS manage their behavior and stay on task in the classroom.
In addition to these academic accommodations, it is also important to provide emotional and social support for students with OS and their families. Accommodations may involve working with the family to develop a plan for addressing the student's needs and providing support groups and other resources for the family.
If you feel like your school is not doing its part accommodating your child living with Ohtahara Syndrome, please contact us for a consultation.
Sources:
Ohtahara Syndrome | EpilepsyDisease.com.
Mission – Cerebral Palsy Associations of New York State. http://cpstate.org.user.server265.com/about-us/mission/
NYU - Langone Health