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AHC and Flunarizine : families point of view international survey report Dominique Poncelin President AFHA (french group of families) AHC Chicago-07-2007 Poncelin D 1 Why such an survey Flunarizine is the most common used drug in AHC treatment However very few scientific publications (not on a large scale) have been published on this specific subject of effectiveness and side effects for this drug. 1993: AHC : a study of 10 patients and results of flunarizine treatment (KSilver- Canada) 2000: AHC manifestations and long term outcome (44 cases) – (Mikati, USA) 2001 : Long term effect of flunarizine on 28 patients with AHC in Japan (MSasaki- Tokyo) AHC Chicago-07-2007 Poncelin D 2 Methodology Questionnaire sent to 94 families (34 North America + 60 Europe) Main subjects on Flunarizine : -- age of starting < > 2 years old -- dosage + taking time in the day -- effectiveness parents’ report : YES / NO -- main fields of effectiveness : hemiplegia attacks , others -- side effects reported -- experience of a break in flunarizine treatment 60 (64%) questionnaires received (18 North America + 42 Europe) AHC cases NOT taking flunarizine : 8 (5 « light ») AHC Chicago-07-2007 Poncelin D 3 Age of start – dosage - taking time < 2 years old : 76 % <5 years of treatment >5 years of treatment <11 mg: 80% <16 mg:15% <21mg:5% <11 mg: 68% <16 mg:27% <21mg:5% Morning:15% evening:25% half in 2 times:60% AHC Chicago-07-2007 Poncelin D 4 effectiveness parents’ report YES : 60% NO : 25% ??? : 15% starting very early without any break flunarizine effect or other drug or natural course? Effectiveness on long term decreasing:40% (after a few years) Steady:15% No change:20% ??? : 25% AHC Chicago-07-2007 Poncelin D 5 main fields of effectiveness Less duration of hemiplegic attacks: 100% Less severity of hemiplegic attacks: 80% Less frequency of hemiplegic attacks: 62% Other fields improved: Dystonic attacks: 25% Balance:sporadic Speech: sporadic AHC Chicago-07-2007 Poncelin D 6 side effects reported YES : 20% Tiredness Appetite balance due to flunarizine or progressive course ?? Side effects usually appeared within 1 month AHC Chicago-07-2007 Poncelin D 7 YES: experience of a break >5 years treatment :30% < 5 years treatment: 10% Because of lack of effectiveness As a trial to check effectiveness After several years of treatment Break for more than 1 month Increasing of attacks: YES : 75% AHC Chicago-07-2007 Poncelin D 8 Summary From the parent’s point of vue : Flunarizine is effective for 60% in decreasing duration + severity of hemiplegic attacks Dosage needs to be increased (but less than15 mg) to keep effectiveness during first years Effectiveness seems to decrease or is “steady” after a few years Some side effects are reported; parents think it is not clear whether it is due to AHC evolution or flunarizine effect Some “break trials” have been done usually with negative effects AHC Chicago-07-2007 Poncelin D 9 Conclusions The number of returned filled in questionnaires (60/94) with a very short deadline (17 days only) really shows motivation from AHC families (both Europe and North America) to be helpful in studies targeting to a better understanding +treatment in AHC Main concerns of families: What is the « best dosage » Are afraid of a break trial to check effectiveness Side effects = AHC or Flunarizine? Long term consequences on AHC child/adult developpement AHC Chicago-07-2007 D Poncelin 10 Conclusion In terms on flunarizine effectiveness, side effects, break experience, results may be cross checked with the analysis of the european and american registry Then, according to results and tendencies, international scientific study with the participation of groups of AHC families may be (or not) decided. AHC Chicago-07-2007 Poncelin D 11