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Type of episodes

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  Siggi | Episodes | il y a 3 mois | Rédigé à l'origine en anglais Type of episodes

  I am wondering what type of episodes you child has. Sunna, my daughter, has hemiplegic ones where she just goes limp on one side without any signs of pain. Then she has episodes where she feels a lot of pain and also goes limp on one side. Sometimes she is screaming with pain. What has been your experience?
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    ramuro il y a 3 mois | Rédigé à l'origine en espagnol

    Creo que los episodios de nuestros hijos son muy variables, en el caso de mi hija de 18 años ,los episodios han ido variando a lo largo del tiempo.Cuando era más pequeña tenia episodios de cudriplejia en los que si eran dolorosos, más tarde el dolor desapareció . Actualmente sigue teniendo crisis hemipléjicas de un lado u otro .Otras veces en cambio comienza siendo una crisis lateral pero acaba convirtiendose en total, pero sin dolor. ¿le administras algun medicamento al inicio de las crisis?
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    Siggi il y a 3 mois | Rédigé à l'origine en anglais

    Hi, nice to meet you. We use Chloral Hydrate when our daughter goes into episodes. 1ml for each kilo. Do you use any medication for episodes?
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    ramuro il y a 3 mois | Rédigé à l'origine en espagnol

    Hola , disculpa por no presentarme; soy Rafi y mi hija Raquel tiene 18 años , se le diagnostico la enfermedad a los siete meses, aunque desde un més ya presentó nistagmus; desde que comenzaron las crisis de paralisis utilizamos el valium rectal ; actualmente usamos el valium oral ,aunque no siempre és eficaz, depende del tipo de crisis y si ella colabora en la relajación.De pequeña , necesitaba dormir para que la crisis pasase , al hacerse mayor y habituarse al medicamento , rara vez se duerme .La dosis inicial es de 10ml si la crisis persiste administramos 5ml más , pero no sobrepasamos esta dosis. En alguna ocasión delante de crisis muy fuertes hemos dado más cantidad , pero sin ningun efecto positivo.
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    katrinaplum il y a 3 mois | Rédigé à l'origine en anglais

    Delaney has episodes when she is weak on one side, sometimes just her arm and sometimes her arm and leg. Her other episodes (which we refer to as attacks) involve her entire body and she is in pain: sometimes dystonia is present other times she is simply limp. Take care. Katrina
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    Christy il y a 3 mois | Rédigé à l'origine en anglais

    With Amy there is no indication of pain. She sometimes sees something she calls cloud. It almost always happens when she's tired, going to sleep or upon waking, though it can happen with a fever or anxiety as well. Her eyes will roll around sometimes go upward and get stuck and she drops. She's on the ground unconsious for hours, doctors always thought it was a non convulsive seizure. Afterward she'd have what they called Todd's paralysis, usually it's her left side BUT it has been the right as well. For days she's unsteady in her walk, dizzy , her speech is slurred and she stutters, often she won't even try and talk, it's too hard. Chewing is too hard, she's always weak now on her left side, she has never bounced back. Amy is 10 and these episodes have taken their toll on her. We are thankful she can walk still and her speech will clear up so it comes and goes.

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