Carla vi o seu e-mail no grupo de Emiplegia Alternante da Infancia.
Meu ingles nao e muito bom, o que impossibilita a comunicacao no grupo.
Me retenho apenas em ler as mensagens dos outros para ver se surge alguma
Tenho uma filha de 2 anos que aos quatro meses foi diagnosticada com
Emiplegia Alternante da Infancia.
Ela foi medicada com 10 gotas diarias de Flunarizina, e nao tenho visto
muita diferenca em seu estado.
Por favor me contate se souber de alguma novidade.
Estou desesperado... Obrigado
- Vitoria-ES -
De: Karla Costa <karlafrazao@...
Data: Terça-feira, 31 de Julho de 2001 06:25
Assunto: [ahc] AHC Brazil
>My name is Karla Oliveira Frazão. I live in Brazil and my eleven year old
>son Jorge Augusto was diagnosed as having A.H.C. when he was four years
>However, as we know, peoples ignorance about this disease, particularly in
>Brazil, is still a cause for our concern.
>Jorge Augusto doesn´t walk by himself. He also doesn´t read or write
>anything despite going to school.
>The hemiplegic attacks occurs frequently, once a week in average, despite
>the medicine ( Flunarin, Rivotril and Tryleptal ) that he takes regularly.
>The epileptic attacks are not so frequent anymore, after the changing of
>the medicine from Depakene to Tryleptal.
>According to the last Magnetic Ressonance Imaging M.R.I. done two months
>ago, Jorge Augusto presents a temple mesial sclerosis caused, said his
>doctor, by the epileptic or the hemiplegic attacks. Maybe by both, he does
>not know yet.
>We have being very concerned about Jorge Augusto`s behavior, lately. He
>seems very excited, sometimes behaving aggressively with no reason to act
>this way. Due to this behavior Jorge Augusto is not going to school these
>The doctor have changed the medicine more than once but we have no success
>in controlling this behavior.
>We believe, me and my husband, that this behavior is related to hormonal
>changes that should be in process because Jorge Augusto`s sleeping is not
>tranquil now-a-days. He wakes several times during the night and even when
>sleeping deeply he moves his body in bed every time.
>We have some questions:
>1) Are these changings a sign that the disease is growing ?
>2) Is there any family that have noticed such changings in children of
>Thank you all for any help.
>God bless you all.
>Jorge and Karla Frazão
>Niterói Rio de Janeiro - Brazil.
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