Communauté l’Hémiplégie Alternante

Le syndrome de l’Hémiplégie Alternante est un maladie neurologique rare.

Re-bonjour par raquelr-pg il y a environ 1 mois

Apparemment, j'ai mal écrit mon adresse e-mail, et tout ce que j'ai écrit sur la maladie de ma fille a été effacé.
Je dois recommencer.
Ma fille, Irene, a été diagnostiquée avec une hémiplégie alternante de l'enfance, à la fin de l'année dernière.
Elle a maintenant 5 ans. C'est une enfant très intelligente, mais quand elle est excitée, elle réagit avec une hémiplégie...

En savoir plus

Associations

  • AHC Assoc. Iceland

  • A.I.S.EA

  • AESHA

  • AHC Foundation

Voir tous les groupes de patients

Activité récente dans la communauté l’Hémiplégie Alternante

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    Vivint Gives Back contest. Win Grant Money for AHCF!!
    topic, publié il y a 12 jours

    Voir la transcription

    Hello AHCF Families and Friends,

    We need your help to vote every day in the Vivint contest to win $250,000.00 to further research into AHC, develop treatments and trial medications, teach the public and professionals about AHC and ultimately find a cure! You have to be on Facebook to participa...

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    Long period of episodes
    topic, publié il y a 30 jours

    Voir la transcription

    I want to know if you have had the same experience as we have. Our daughter Sunna has had 2 periods of episodes that last for 12 days. Once when she was 2 year old and then again when she was 5. Please tell me if you have had the same experience and how far apart were the periods?
    Best regard...

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    AHC family meeting in Raleigh, North-Carolina
    topic, publié il y a environ 1 mois

    Voir la transcription

    AHCF (US organization for AHC) is hosting a family meeting in Raleigh, North Carolina in July 2011. More information is to be found here: http://ahckids.org/index.php?option=com_content&view=article&id=63&Itemid=63

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    Oxibato de Sodio
    topic, publié il y a environ 1 mois

    Voir la transcription

    Hello friends,
    Is anybody in this community taking Sodyum Oxibate?
    Do you have any information about a study on the medicine that Dr. Swoboda's team was carrying out?
    Regards,
    Rafi

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    New article on medication for treating AHC
    topic, publié il y a environ 1 mois

    Voir la transcription

    Article called:
    Alternating hemiplegia of childhood: successful treatment with topiramate and flunarizine, a case report.

    Abstract online here:
    http://www.ncbi.nlm.nih.gov/pubmed/21575320?dopt=Abstract

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    Profiles of blood biomarkers in alternating hemiplegia of childhood - Increased MMP-9 and decreas...
    news, publié il y a environ 1 mois

    Voir la transcription


    Alternating hemiplegia of childhood (AHC) is a rare disorder characterized by repeated plegic attacks, movement disorders, autonomic phenomena, and developmental delay. To obtain insights into the pathophysiology of AHC, we..

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    Drugs used during episodes
    topic, publié il y a environ 1 mois

    Voir la transcription

    I have noticed that parents are using different drugs while the episode in ongoing or afterwards. We have been using Chloral Hydrate, rectally, when our daughter has an episode. She will got to sleep for 8-12 hours and when she wakes up she will have no sign of hemiplegia.
    What is your experie...

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    Type of episodes
    topic, publié il y a environ 1 mois

    Voir la transcription

    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 yo...

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    Update on Pepsi Challenge Grant Award
    topic, publié il y a environ 1 mois

    Voir la transcription

    Hi,

    As a new fundraising push from the AHC Foundation in the US begins, Sharon, from the AHC Foundation offers a quick summary on the Pepsi Challenge Grant award that was partially received already.

    Over to Sharon, "We received the first half of the $250K from Pepsi in January. Dr Swoboda's...

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    New Opportunity to vote for an AHC project...
    topic, publié il y a 2 mois

    Voir la transcription

    From Sharon at the AHC Foundation:

    AHCF Families and Friends,

    Are you Ready to start voting for grant money again?

    Many people have wondered if we were going to enter Pepsi again. They have changed the contest and makes it an unlikely fit for us however Jeff has found us this opportunity...