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Why such an survey

AHC and Flunarizine : families point of view international survey report Dominique Poncelin President AFHA (french group of families). Why such an survey. Flunarizine is the most common used drug in AHC treatment

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Why such an survey

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  1. AHC and Flunarizine : families point of view international survey report Dominique PoncelinPresident AFHA (french group of families) AHC Chicago-07-2007 D Poncelin

  2. 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 D Poncelin

  3. 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 D Poncelin

  4. Age of start – dosage - taking time • < 2 years old : 76 % • <5 years of treatment • <11 mg: 80% <16 mg:15% <21mg:5% • >5 years of treatment • <11 mg: 68% <16 mg:27% <21mg:5% • Morning:15% evening:25% half in 2 times:60% AHC Chicago-07-2007 D Poncelin

  5. 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 D Poncelin

  6. 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 D Poncelin

  7. 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 D Poncelin

  8. experience of a break • YES: >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 D Poncelin

  9. 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 D Poncelin

  10. 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

  11. 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 D Poncelin

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