Monday, November 23, 2009

Ketogenic Diet

After a ton of research, lots of prayer, discussion, silence, more reading, more prayer......and then finally just a mommy's "gut" instinct, we've decided to put Luke on the Ketogenic diet in an effort to control his infantile spasms.
Our other option at this point was to try to something called ACTH therapy, steroid injections given twice a day. This method is known to be very effective, but somehow I couldn't get a peace about it. Technically, it waits ....there on the back burner, ready to be used, but I truly pray Luke never needs it.
The plan now is to wean Luke off of one of his anti-seizure meds (Topamax) over the next two weeks. We will then take him to St. Louis Children's (not sure on a date...somewhere around the 7th of December) and he will admitted for about a week to start the diet. The diet change at this stage is thankfully just a change in formula. Luke does eat some table food, but he hasn't really taken to it much. So, it shouldn't be a huge change for him to just drink a different kind of formula for a while.
Your unending support, ceaseless prayers, words of encouragement...it is all so very much appreciated!! God is with us!

5 comments:

  1. We have prayed diligently thst the confirmation would come every direction & that you both would have peace.

    I am grateful that there were options to consider and what all of us want is our Luke to be restored -perfect & complete!

    Praying always & staying close!

    Dad

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  2. It is so hard to make these decisions. I hope the keto diet is a success for Luke. You're right that you might as well try it when it's "just" a formula change instead of when it's a full meal change!

    Good luck and enjoy your Holiday AT HOME (not inpatient for ACTH)!

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  3. I'm continually praying that the keto diet is exactly what Luke's little body needs... and that steroid treatment won't have to be considered again.

    You both are inspiring... living a life of faithfulness to Him above and beyond all circumstances.

    Love ya!

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  4. Just wanted you to know that you were really on my heart and in my prayers today. I know it's so difficult to make these kind of choices, but praying that God will give you wisdom and peace and that these hard times will bind you closer together as a family.
    Much love,
    Deanne

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  5. Praying this works for your precious Luke!

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