There is still hope the ketosis will help his seizures in 2-3 days though if it takes longer it is still ok--some kids it takes up to 10 weeks to get the full effect. He is in partial ketosis, just not full ketosis yet. We hadn't thought that would be a problem but obviously we are still learning. Once again, Philip has never been textbook. The prayer now is that his body will move into full ketosis.
Unfortunately, Philip is not in full ketosis yet. The doctors, like most others who have seen Philip, do not know exactly why. They do say that it does take longer for some kids but they are reviewing everything just to make sure. They are going to check with the kitchen preparation of his meals. We had a noticeable error this morning so we need to make sure there have not been other smaller errors that weren't caught but make a big difference. If he was given regular jello instead of sugar-free, we may not have caught it but that would make the ketone process stop. They will also take away his multi-vitamin which has a small amount of carbs for now. They will start a vitamin/mineral that will hopefully help his body ramp up its production of ketones. They are also reducing his diet but not as much as before. He will just take a small step back down. At his age and weight, he would receive more calories if he was more active. Since his mobility is limited, he doesn't need as many and that could be affecting the process. The dietician said she has never had to change the calorie intake 3 times in one hospital stay. I said, "If there's anybody who doesn't fit into the normal process, it will be Philip. He never has." I told the doctors he was just too sweet. :) This unforeseen delay means we will be here until Sunday at least. Hopefully, he will move into ketosis today and then can be monitored through Sunday morning. Thankfully, Dr. Said, who has been seeing him and we really like, will be working all weekend so we won't have to change doctors mid-stay. Now, we just keep feeding him the meals and snacks and wait for the ketone levels to rise. In between, we play in here or go to the playroom or explore on the premises.
There is still hope the ketosis will help his seizures in 2-3 days though if it takes longer it is still ok--some kids it takes up to 10 weeks to get the full effect. He is in partial ketosis, just not full ketosis yet. We hadn't thought that would be a problem but obviously we are still learning. Once again, Philip has never been textbook. The prayer now is that his body will move into full ketosis. Comments are closed.
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Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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March 2024
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