Stimulous-Induced Drop Episodes (SIDEs)
About 20% of individuals with CLS may experience Stimulus-induced drop episodes (SIDEs) starting in mid-childhood to the teenage years. Unexpected tactile or auditory stimuli or excitement triggers a brief collapse, but no loss of consciousness. If the person is not injured by the fall, he or she is back to normal within seconds.
The occurrence of drop episodes in CLS differs between individuals and with time and age. The likelihood of having a drop episode seems to be related to the level of anxiety at the time, so that the fear of falling becomes self-fulfilling. The drop episodes increase in frequency and severity over time, often becoming debilitating as the individual is afraid to stand for fear of falling down. Many remain household almbulatory but use a wheelchair when leaving the home for safety. individuals with persistent drop episodes may be at higher risk for spinal cord compression injuries.
Articles on Drop Episodes
Stimulus-Induced Drop Episodes in Coffin-Lowry Syndrome PEDIATRICS Vol. 111 No. 3 March 2003, pp. e197-e202 (Full Text)
Drop episodes in Coffin-Lowry syndrome: exaggerated startle responses treated with clonazepam. Pediatr Neurol 1998 Aug;19(2):148-50
Treatment of Drop Attacks in Coffin-Lowry Syndrome With the Use of Sodium Oxybate Navasuma Havaligi, MD, Chandra Matadeen-Ali, MD, Divya S. Khurana, MD, Harold Marks, MD, and Sanjeev V. Kothare, MD Pediatr Neurol 2007;37: 373-374. Full Text (PDF)
Medications for Drop Episodes
Clonazepam or Clorazepate have both been shown to be partially effective in controlling drop episodes by reducing anxiety. However, tolerance to the drugs usually develops which necessitates higher doses, and eventually the drugs lose their effectiveness. A regimen of three weeks on and one week off may mitigate this, or only giving one dose in the morning and none at night.
Lamictal (limotrigine) seems to be the most consistently effective drug found to date, sometimes resulting in 100% control of the drop episodes, however, it does not work for everyone.
Sodium Oxybate (GBH) has been shown to be 100% effective in one 2007 case study (See articles, above). Further study is necessary.
For a list of seizure medications, see
http://homepage.ntlworld.com/foliot/liss/lissmeds.htm
For a list of anti-anxiety medications, see http://www.adaa.org/finding-help/treatment/medication
For information on homeopathic anti-anxiety treatments, see http://www.holisticonline.com/Remedies/Anxiety/anx_homeopathy.htm
Medications for Seizures and Anti-Anxiety