Dr. Comi's Updates

This page will announce recent research findings, highlight important information, and post questions and answers of general interest to individuals and families affected by Sturge-Weber syndrome. The page will be updated every week. Readers can find previous updates on the Archived Updates page.

JUNE 21, 2017

Question: The new data on Epidiolex looks exciting.  Can my child be treated?

Answer:
Epidiolex is not yet approved for clinical use and is currently only available in clinical trials. While other formulations of cannibidiol oil are available, it’s important for parents and patients to understand that these formulas do not contain the same ingredients as Epidiolex. and it is difficult to predict how patients with Sturge-Weber syndrome will respond to them. If other formulations are used, it is very important the patients’ physicians be made aware. Liver function and blood levels of other seizure medications must be monitored, and patients and parents need to report any side effects.

Though early findings are promising, more studies are needed to fully understand the safety and usefulness of Epidiolex for SWS.

Check back for new posts and up-to-date information from Sturge-Weber syndrome expert Dr. Anne Comi. 


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Read our Archived Updates for more information on past questions and answers.

Note: These updates are not intended to address individual patient issues.  If you have specific patient questions for Dr. Comi, please use the Contact Dr. Comi form and indicate that your question is private in nature.

 

Want to know more about the exciting research going on at the Kennedy Krieger Institute to discover new therapies for Sturge-Weber syndrome?

Visit our Current Research section.

 

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Dr. Comi's Updates

Dr. Comi announces research findings, posts important information, and answers questions of general interest to families living with Sturge-Weber syndrome. 

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Sturge-Weber Center Events

Fall 2017:

Tropical Realty Charity Golf Tournament

More information to come!
 

 

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