Glut1 DS in Greece

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  pantin | publié il y a 4 mois | Rédigé à l'origine en anglais Glut1 DS in Greece

  Hi Allie,
  it' s me again!
  we' ve already have an excellent neuro and a dietician that began the ketogenic diet. But my brother's baby its the only baby in Greece and I would like another opinion. He drinks in bottle Ketocal (ratio 4,5:1, 2ml liquigel and superamine with carnitine). He started the diet 40 days ago. When can we expect an improvement? What about creams?
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  • 
    gsteele publié il y a 4 mois | Rédigé à l'origine en anglais

    Hello!
    So good to hear that you are happy with the neurologist and dietitian - that is such an important key in successful treatment, and then just the overall feel that you are in good hands - what a comfort!
    Are you seeing any changes at all since starting the diet? More alertness? Fewer seizures? Some of the movement disorder components are slower to respond to the diet, which may still cause delays in things like rolling over, sitting up, and later crawling, walking, etc.
    Your prescribed treatment sounds ideal based on what others have shared. A good, high ratio with supplements. Are you monitoring ketones? If so, are they showing at a good high level? There is lots of tinkering that can be done with the diet, and finding the ideal ratio for each patient can sometimes take some time and experimenting. It seems that some patients do best with a high one, some do better with a lower one.
    When patients are at an age when formula can still be used, Ketocal is a great option. Many older patients who are tube fed use it as well. Cream is often used with older patients who are eating a solid diet, and while it adds fat and some food preparation options, it also adds carbs to the meal. It can also contribute to cholesterol issues, which can be troublesome for older patients because our kids are on the diet for so long.
    I wish you well! So wonderful that you have a diagnosis at such a young age.

    Take care,
    Glenna