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Re: [ahc] AHC Brazil

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  • Vilson
    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
    Message 1 of 2 , Aug 2, 2001
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      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
      novidade.

      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

      Vilson Lirio

      - Vitoria-ES -

      tracolit@...

      -----Mensagem original-----
      De: Karla Costa <karlafrazao@...>
      Para: afha@yahoogroups.com <afha@yahoogroups.com>
      Data: Terça-feira, 31 de Julho de 2001 06:25
      Assunto: [ahc] AHC Brazil


      >Dear Sirs,
      >
      >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
      old.
      >However, as we know, people’s 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
      >days.
      >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
      so
      >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
      Jorge
      >Augusto´s age?
      >
      >Thank you all for any help.
      >God bless you all.
      >
      >Jorge and Karla Frazão
      >Niterói – Rio de Janeiro - Brazil.
      >
      >
      >
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