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Keto update – stick or twist? Looking at whether we stick with the diet or come off it completely.
Plan B – Samuel started the Ketogenic Diet in April. It was quite soon that we could see a positive change in Samuel and his seizures. Despite his ketones being low and sometimes very up and down, there was a noticeable difference in how settled Samuel had become. It wasn’t just us that noticed but his carers at Julia’s House and our friends and family.
Fats and Fits – Dairy of our stay in hospital to make changes to the diet.
Drugs wean 1 – Well, we met with Dr H this week to discuss the Ketogenic Diet and what our plans are for his drugs. We have always talked about looking at weaning off Topiramate as that and Ketogenic Diet together long-term, may not be good for the kidneys but also Topiramate can cause acidosis in the stomach which can reduce ketones.
The diet dream has come true – I’ve been debating all morning about whether to publish this post. I’m not sure why. I mean do I really think I’ll be tempting fate or am I worried I’m just wrong? But I really don’t think I am. I think I need to finally say this out loud because everyone around me is saying it and perhaps I just need to get a grip and say it myself. So here goes, the ketogenic diet is working.
A day to remember – What happened (or not happened) yesterday may be just a one-off, never to be repeated again. It may have just been a miraculous day, coincidence, a fluke, just a bloody good day. Samuel had NO seizures yesterday. None. Samuel can have something like anywhere between 5 and twenty seizures a day. Yesterday, Samuel had none. He has had seizures every single day of his life. Until yesterday.
Ketogenic Diet – first 14 days – So we are almost coming up to 14 days since Samuel started the Ketogenic Diet.
Ketogenic Diet begins – So we ‘ve done it, Samuel has now started the Ketogenic Diet. As I write this, Samuel’s ketone levels are now just inside the therapeutic range, so we are heading in the right direction.
Believer in hope – We finally have a date for Samuel to go into hospital to start the ketogenic diet. Assuming that he doesn’t suddenly come down with a bug and that there is a bed available, we are booked to go in on 23 April.
A sign? – Yesterday, I took Samuel into hospital for a blood test which was to be followed by a clinic appointment with Sam’s pediatrician, Dr H. Samuel had to fast for the blood test as it was in relation to starting the ketogenic diet, so we turned off his feeding pump at midnight instead of letting it continue until 8am.
Ketogenic Diet? – Just a note to say that Sam’s doctors are looking into the possibility of putting him on a special diet which has been proven to help epilepsy.