Question sent via e-mail about the ketogenic diet

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  AllieFreitas | published 5 months ago | Originally written in English Question sent via e-mail about the ketogenic diet

  Dear Glut1 community-

  We received this question via e-mail: Other treatment Ketogenic Diet? Alternative medicine? Food supplements? My 17 year old girl, diagnosed at age 14, could not stand the diet, too morally difficult.

  Any responses would be greatly appreciated.

  FYI: The original question was received in French-

  Autre traitement que régime cétogène ? Medecines alternatives ? Compléments alimentaires ? Ma fille de 17 ans, diagnostiquée à 14 ans, n'a pas supporté le régime cétogène, moralement trop difficile.
  5 replies to the topic — see all replies

  • 
    ssavioz published 5 months ago | Originally written in English

    The recommended treatment for Glut1 is the Ketogenic Diet. There are products produced by a company named Nutricia. The name of the products are Ketocal. They are available in different ratios. The products do require a prescription or a doctors order. The Ketocal comes in a powder and in a pre-mix form. The recommended usage of these products is either by mouth or by feeding tube. The Ketocal is used as a meal replacement and in some cases as a supplement. Costs associated with these products are typically absorbed by medical insurance.

    I hope this information is helpful.

    Best Regards,

    Samra
    Remi Savioz Glut1 Foundation
  • 
    AllieFreitas published 5 months ago | Originally written in French

    Here is Samra's response in French.

    Voici la réponse de Samra en français.

    Le traitement recommandé pour Glut1 est le régime cétogène. Il existe des produits fabriqués par une société nommée Nutricia. Le nom des produits sont Ketocal. Ils sont disponibles en différentes proportions. Les produits ne nécessitent une ordonnance ou un ordre de médecins. Le Ketocal vient dans une poudre et sous une forme pré-mélange. L'utilisation recommandée de ces produits se fait soit par voie orale ou par sonde gastrique. Le Ketocal est utilisée comme un substitut de repas et dans certains cas comme un complément. Les coûts associés à ces produits sont généralement absorbés par l'assurance médicale.
  • 
    gsteele published 5 months ago | Originally written in English

    Hi,
    While the ketogenic diet is the treatment of choice as it provides the most nourishment to the starving brain, there are several patients who use a Modified Atkins approach and have good success with symptom management. It is sometimes more agreeable with patients, especially older ones. Also, there are some older patients who have discontinued the diet for various reasons and managed to experiment and find other things to help control some of their symptoms (frequent eating, high carb feeding patterns, corn starch products, etc.). There is a clinical trial expected to begin soon in the US for the use of triheptanoin (C7 oil) as an alternative treatment to the ketogenic diet. There are high hopes that it will be successful and we are anxiously awaiting the start.

    Best wishes,

    Glenna
  • 
    AllieFreitas published 5 months ago | Originally written in English

    This response came from the Glut1 Yahoo group:

    Hello
    I m from France too and my son gaultier is 12 yo
    He has a ketogenic diet as atkins modified diet .
    He eats about the same things than brothers and sisters and after drink a glass of oil
    That's not very easy but that s the way to live the same Life as his friends and family ,we do always have a bottle of oil in our cars to go to restaurant or by friends
    This is our expérience but i'd like to know experience of child with stem cell transplantation

    I m a new member of glut1ds and very happy to share all this news with everybody.
  • 
    AllieFreitas published 5 months ago | Originally written in French

    Cette réponse est venue du groupe Glut1 Yahoo:

    Bonjour,
    Je suis de France aussi et mon fils est Gaultier de 12 ans.
    Il est sur le régime cétogène comme Atkins modifiés alimentation.
    Il mange les mêmes choses que ses frères et sœurs manger, et après boire un verre d'huile.
    Ce n'est pas très facile, mais c'est la façon de vivre la même vie que ses amis et sa famille. Nous ne toujours avoir une bouteille d'huile dans nos voitures pour aller au restaurant ou par des amis.
    C'est notre expérience, mais je voudrais savoir l'expérience de l'enfant avec la transplantation de cellules souches

    J'ai ma nouvelle membre de glut1ds et très heureux de partager toutes ces nouvelles avec tout le monde.