Since AHC was defined in 1971, there have been various theories and attempts at relief through medication. For an in depth look at the history of medications tried with AHC view Dr Ken Silvers presentation called AHC 101. (link)
Currently there are a handful of global research projects testing different drug compounds on mouse models or ISP stem cells, hoping to pinpoint a candidate for clinical trials and possible future treatment, to alleviate some of the symptoms of AHC.
Review Research Projects here.
Presently, however, medicinal treatment options are extremely limited. To date the only drug frequently used in AHC patients is Flunarizine. The medication Flunarizine (trade name Sibelium), has been reported to be at least somewhat effective in reducing the severity, intensity and/or duration of dystonic and/or paralytic episodes in up to 2/3 of AHC patient’s. Flunarizine, a complex medication that among other actions blocks calcium channels, is routinely used in other countries for migraine. However, it has not yet been approved for use for any indication in the U.S. While it is not readily available in the U.S., it can be obtained by physicians or families under a special permissions process from Canada or elsewhere (see below).
Caution:Dr Kathryn Swoboda: AHC patients are medically complex and often suffer from other symptoms or problems that require additional medications or treatment indications , including epilepsy and behavioral issues, gastrointestinal symptoms, apnea, or nutritional concerns, among others. Besides the Primary Care Doctor there may be a number of specialists caring for your child. It is imperative to inform them of all the medications your child is on and ideally seek out a physician who can help coordinate care and communication among the various specialists. Ask your primary care doctor about the best options for establishing a ‘medical home’ for your child. Sudden changes in medications can be associated with serious and even life threatening consequences such as status epilepticus, status dystonicus or even sudden death in rare instances. Thus when adding or taking away medications this is a critical time to monitor closely about any observed changes and to have frequent communication with your health care team.Flunarizine Package Insert
Obtaining Flunarizine (aka Sibelium) from Canada:
(FDA allows patients to purchase up to a 3 month supply for personal use for drugs not approved in the U.S.)
Occasionally the medication may be delayed in Customs and the FDA may require a letter of need. Following are templates for such letters, one from the parent and one from your Physician. Please use them as needed.
Physician letter to accompany medication (Word Document)Parent letter to accompany medication (Word Document)
These Canadian Pharmacies distribute Flunarizine manufactured in Canada as well as other countries.
If you want to order only the Flunarizine manufactured in Canada you must ask for it and often the price will be more:
266 Graham Avenue
PO Box 2581 Station Main
Call Center Hours of Operation:
Monday to friday: 7:00 am to 12:00 midnight CST
Saturday: 8:00 am to 6:00 pm CST
Sunday: 9:30 am to 6:00 pm CST
Monday to Friday: 10:00 am to 4:00 pm CST
Saturday and Sunday: Closed
Marks Marine Pharmacy (formerly Mark’s Plaza Pharmacy)
239 S.E. Marine Drive
phone: 1 877-888-9265
Fax: 1 877-888-9805
Mon-Fri 9:00 am to 5:00 pm
Call Marks’ Pharmacy for a Patient Questionnaire at 1-877-888-9265. Once you receive this questionnaire, complete and fax it to 1-877-888-9805 or mail it to the address above with a new prescription from your doctor. Please call Mark’s with any additional questions.