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Associazione Italiana per la Sindrome di Emiplegia Alternante. THE ITALIAN DATA BASE. U.O.di Neuropsichiatria Infantile Ospedale Maggiore “C.A. Pizzardi” Bologna. The Italian Data Base. The Italian Data Base. Questionnaire for child neuropsychiatrist: Word, Access.
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Associazione Italiana per la Sindrome di Emiplegia Alternante THE ITALIAN DATA BASE U.O.di Neuropsichiatria Infantile Ospedale Maggiore “C.A. Pizzardi” Bologna
The Italian Data Base Questionnaire for child neuropsychiatrist: Word, Access. Consultation of clinical documentation Parents’ Interview
The Italian Data Base- The Questionnaire (1) Name-surname Birthdate Place of birth Address Phone number E-mail PATIENT NEUROPSYCHIATRIST Name-Surname Address Phone number E-mail
The Italian Data Base- The Questionnaire (2) PHYSIOLOGICAL HISTORY PREGNANCY DELIVERY CONSANGUINEITY
The Italian Data Base- The Questionnaire (3) PAROXYSMAL MANIFESTATIONS COLOR OR TEMPERATURE CHANGE TONIC/DYSTONIC ATTACK HEMIPLEGIA OR LIMPNESS ON ONE SIDE BREATHING DIFFICULTIES EYE MOVEMENT ABNORMALITIES Y/N ANSWER
The Italian Data Base- The Questionnaire (3) PAROXYSMAL MANIFESTATION HEMIPLEGIA DYSTONIA ABNORMAL OCULAR MOVEMENTS EPILEPSY EPILEPTIC STATUS Age of onset Frequency Length Last observation Semeiology Triggers Age of disappearance
The Italian Data Base- The Questionnaire (4) NON PAROXYSMAL DISORDERS Age of onset Last observation Semeiology Follow up (Improved. Unchanged. Worsened) Any variation With attacks POSTURAL DYSTONIA CHOREOATHETOSIS TREMOR HYPOTONIA COGNITIVE IMPAIRMENT LEARNING DISABILITIES BEHAVIOURAL DISORDERS DEVELOPMENTAL DELAY
The Italian Data Base- The Questionnaire (5) COGNITIVE FUNCTION LEARNING DISABILITIES BEHAVIOURAL DISORDERS HAVE BEEN EXAMINED IN DETAIL BY PROF. VIANELLO AND DR. MOALLI FROM PADOVA
The Italian Data Base- The Questionnaire (6) SOMATIC FEATURES WILL BE EXAMINED IN DETAIL BY PROF. NERI FROM ROME
The Italian Data Base- The Questionnaire (7) DIAGNOSTIC ASSESSMENT TAC MRI fMRI INTERICTAL SPECT ICTAL SPECT EEG POLYGRAPHIC EEG VEP AEP ABR
The Italian Data Base- The Questionnaire (8) DIAGNOSTIC METHABOLIC ASSESSMENT MUSCLE BIOPSY SKIN BIOPSY AMINOACIDOGRAM ORGANIC ACIDS LACTATE PYRUVATE CARYOTYPE VLFA LYSOSOMAL ENZYME
The Italian Data Base- The Questionnaire (9) THERAPY NAME OF DRUG AGE OF ONSET EFFICACY
The Italian Data Base- The Questionnaire (10) DISCUSSION IS THE QUESTIONNAIRE COMPLETE? DO WE NEED FURTHER INFORMATION?
The Italian Data Base- The Questionnaire (11) SUGGESTIONS Is there a history of MIGRAINE in your family? Are any other family members affected with AHC? Which is the main clinical symptom/sign at the moment? Has your child ever had an ictal EEG or a VIDEO (ictal) EEG? OTHER SUGGESTIONS?
The Italian Data Base Results 29 Italian patients affected with AHC 1 patient refused to take part in the data base 1 patient (from Bologna) is still under investigation 1 patient (from Pisa) we are going to contact 26 patients whose data are already in the data base (22/26) patients are members of the Italian AHC association (AISEA)
The Italian Data Base- Results PAROXYSMAL ATTACKS
The Italian Data Base- Results NON PAROXYSMAL DISORDER
The Italian Data Base- Results COGNITIVE FUNCTION
The Italian Data Base- Results COGNITIVE FUNCTION
The Italian Data Base- Results THERAPY
The Italian Data Base Dott.ssa Antonelli-Firenze Dr Cardona-Rome Dr Cotrufo-Napoli Prof Dalla Bernardina-Verona Dr De Vito, Dr Cioni-Pisa Dott.ssa Faggioli-Ferrara Dr Galeone-Bari Dr Gambardella-Catanzaro Dr Giacanelli- Rome Dr Gobbi- Bologna Dott.ssa Granata- Milan Prof Laverda-Padova Dr Pelliccia-Rome Dr Piccinelli- Varese Prof.Ricci-Rome Dott.ssa Santucci- Bologna Dott.ssa Tedesi- Magenta Prof Veneselli- Genova Prof Vigevano –Rome Dr Zucca- Bosisio Parini
Thanks Italian AHC Association – AISEA Dr. Giuseppe Gobbi and Dott.ssa Dora Suglia