What is the Angelman Syndrome Clinic?

The Angelman Syndrome Clinic is a collaboration between Neurology and Medical Psychology at BC Children's Hospital, serving children and adolescents across the province with Angelman Syndrome to support their overall health and development. We focus on issues around epilepsy, sleep, learning and behaviour. We provide families with tools to help their loved ones thrive in their community.

Beyond clinical supports, we provide opportunities for families to participate in our collaborative and active research program. We work closely with the Angelman Syndrome Clinic at the Children's Hospital of Eastern Ontario (CHEO) in Ottawa.

What services are provided by the Angelman Syndrome Clinic?

We will review medical and developmental issues that are common in Angelman syndrome. We will provide medical management advice and spend time discussing behavioural and learning challenges. We will make further referrals and organize testing as necessary. Our clinic is intended to support community care teams, including pediatricians, family physicians as well as referring neurologists.

Who is a part of the Clinic?

The clinic team consists of two pediatric neurologists, Dr. Cyrus Boelman and Dr. Linda Huh, two psychologists, Dr. Krista Johnston and Dr. Jennifer Engle, and a nurse clinician, Ms. Lynne Beszant. They are sometimes joined in the clinic by physicians who are training in pediatric neurology.

‎Who should be referred to the Clinic?

Infants, children, and adolescents with a diagnosis of Angelman syndrome should be referred. We hope to see each patient on an annual basis to support and not replace their regular medical team.

How can my child be referred to the Clinic?

Referrals are accepted from family physicians, pediatricians, and other specialists and should be sent to the Division of Neurology at BC Children's Hospital.

When will my child be seen once referred?

Our clinic is scheduled 3-4 times per year. Given the time we spend with each family, about 2 hours, we do not see a high volume of patients each clinic. However, we prioritize seeing new patients, as returning patients may be seen at other times, depending on their needs.

I don't live in Vancouver. Can my child be assessed by the Angelman Syndrome Clinic?

Yes. While our program is based at BC Children's Hospital in Vancouver, we offer Telehealth from hospital or home and community outreach appointments whenever possible.

Where can I find more information about Angelman Syndrome?

We encourage families to connect with the Canadian Angelman Syndrome Society at www.angelmancanada.org. An overview of Angelman syndrome can be found here: https://ghr.nlm.nih.gov/condition/angelman-syndrome

 What is the Ketogenic Diet?

The Ketogenic Diet is a medical prescription diet that is very high in fat, moderate in protein, and very low in carbohydrate. It must be calculated for each patient individually by a Registered Dietitian. The diet must be followed very strictly to achieve the desired effect. Modified versions of the classic ketogenic diet (Modified Ketogenic Diet, Modified Atkins Diet, MCT Oil Diet, or Low Glycemic Index Treatment) may be better suited for older children and teenagers.

What is the Ketogenic Diet Used for?

The ketogenic diet can be used to treat a variety of medical conditions. At BC Children's Hospital, ketogenic diets are used to treat seizures that have not been controlled with medications. The ketogenic diet is also the treatment of choice for patients with certain genetic diagnoses such as Glucose Transporter Type 1 Deficiency Syndrome (GLUT-1 DS) and Pyruvate Dehydrogenase Deficiency (PDHD). Although the ketogenic diet may be used for children with any type of seizure, it is particularly effective in controlling childhood myoclonic, absence and atonic (drop) seizures. The diet has also been shown to be beneficial in other epilepsy syndromes such as Lennox-Gastaut and Dravet syndrome.

All ketogenic diets require careful medical supervision and direction from a specially trained physician and dietitian. Medical supervision requires ongoing bloodwork and monitoring to prevent adverse effects. The ketogenic diet should not be attempted without a specially trained team including a physician and a registered dietitian.  Do not try to start the diet without medical supervision.

Who is a Candidate for the Ketogenic Diet?

Patients must be referred by a pediatric neurologist.

How can my child start on a ketogenic diet?

The first step is a referral to the ketogenic diet team from your child's pediatric neurologist. You and your child will then be seen by the ketogenic diet multidisciplinary team. The team will provide you with more information about the diet and determine whether or not your child is a good candidate for ketogenic dietary therapy.  

Where can I find more information about ketogenic diets?

Who can I contact about BC Children's Hospital's Ketogenic Diet Program?

Speak to your pediatric neurologist to discuss whether the ketogenic diet would be a good fit for your child.

I don't live in Vancouver.  Can my child be on the ketogenic diet?

Yes. While our program is based at BC Children's Hospital in Vancouver, we offer telehealth and community outreach appointments to patients and families across BC and Yukon.

Log In to See Your Fasting Guidelines etc.

What is the Neurooncology Program?

The Neurooncology Program is a cohesive collaboaration between oncology and neurosciences at BC Children's Hospital, serving children and adolescents across the province with brain, spinal cord and nerve sheath tumors. We also address neurological issues that arise in children and adolescents with cancer. In addition, we serve those with nervous system tumor predisposition syndromes and collaborate with other disciplines to optimise their care. We focus on the best curative treatment of the tumor or cancer whilst aiming to mitigate the short term and long term adverse effects of the tumor and its therapy to provide children and adolescents the best chance possible to thrive with their family, in school, and in their community.

Hand in hand with providing compassionate holistic multidisciplinary care, we offer the opportunity for our patients to participate in local, international and national clinical trials as we strive to advance the care of children with nervous system tumors or neurological consequences of their cancer therapy. 

What services are provided by the Neurooncology Program?

We will evaluate the tumor type and tumor burden, your child's neurological function and general health. We will provide medical care and advice, collaborating with multidisciplinary teams to provide the complex care when required. We are a resource and support local community care teams including pediatricians, oncologists, and family physicians to allow care to be provided in the local community when possible.

Who should be referred to the Neurooncology Program?

Children and adolescents with a new diagnosis of a brain tumor, spinal cord tumor, neurofibromas or schwannomas. Children and adolescents with cancer or a tumor predisposition syndrome PLUS neurological dysfunction.  

How can my child be referred to the Neurooncology Program?

New diagnosis of a brain or spinal cord tumor requiring urgent care should be referred to Divisions of Neurosurgery or Oncology at BC Children's Hospital. 

If the patient has a tumor secondary to tumor predisposition syndrome such as neurofibromatosis or tuberous sclerosis, the patient may be referred on a non-urgent basis to the Division of Neurology at BC Children's Hospital and will be seen in the respective Tuberous sclerosis or Neurofibromatosis clinics.

Multidisciplinary tertiary/quarternary care is coordinated as needed for the benefit of patient care.

If the child or adolescent has cancer and a neurological disorder they should be referred to the Neurology division at BC Children's Hospital. 

Who can I contact about BC Children's Hospital's Neurooncology Program?

On referral by your pediatrician or family physician your child will be triaged to see the appropriate specialist in the team for your child's condition.

I don't live in Vancouver. Can my child be assessed by the Neurooncology Program?

While our program is based in Vancouver at BC Children's Hospital and most often your child will need to attend BC Children's Hospital for evaluation by various specialists, testing and treatment. We offer outreach and virtual health when possible.

Where can I find more information about the Neurooncology Program?

We encourage families to connect with :

http://www.bcchildrens.ca/health-info/coping-support/cancer/brain-spinal-tumours

http://www.bcchildrens.ca/our-services/clinics/cancer-blood-disorders/#Follow-up

https://www.braintumour.ca/

https://www.tumourfoundation.ca/

What is the Sleep Medicine Program?

The BCCH Sleep Medicine Program is a multidisciplinary program serving children across the province with sleep problems such as sleep apnea, insomnia, hypersomnia (such as narcolepsy), restless legs syndrome, and parasomnias (unusual behaviours occurring from sleep), among others. It is the only program in British Columbia that is specifically dedicated to the treatment of children with sleep disorders.

The program is committed to improving the delivery of clinical care, and is closely tied to the Sleep At Home research initiative, which is dedicated to identifying and validating new technologies to bring sleep testing closer to the patient’s home.

What services are provided by the Sleep Medicine Program?

The Sleep Medicine Program provides both clinical assessments and objective testing. Over 600 clinic visits take place per year. In addition, nearly 400 overnight sleep studies (polysomnography) are performed annually. Other tests, including multiple sleep latency tests (MSLT), home oximetry, and actigraphy, are also provided.

Who is in the program?

Four physicians are currently part of the program, including one pediatric neurologist, Dr. James Lee, a fellowship-trained sleep specialist. He has a particular interest in hypersomnias, the interaction of epilepsy and sleep, insomnia, and sleep difficulties in children with neurological disorders. Dr. Lee sees patients in the Sleep Medicine Clinic, which is located within the Respiratory Medicine Clinic, weekly. He also does sleep assessments in the Neurology Clinic.

Who should be referred for a Sleep Assessment?

Infants, children, and adolescents with snoring or breathing problems during sleep, difficulty falling or staying asleep, daytime sleepiness, or abnormal nighttime behaviours can be referred to the Sleep Medicine Clinic. Referrals are accepted from family physicians, pediatricians, and other specialists.

How can my child be referred to the Sleep Medicine Program?

Referrals to Dr. Lee can be sent to either the Division of Neurology or the Division of Respiratory Medicine. General sleep referrals should be sent to the Division of Respiratory Medicine.

I don't live in Vancouver. Can my child be assessed by the Sleep Medicine Program?

Yes. If your child needs a coordinated test, such as an overnight sleep study, they can be seen in the clinic the day before or after the study takes place.  Selected patients can be seen by Virtual Health, which allows them to be assessed from home, without the need to travel to Vancouver.