Rolling the dice

Miss Z having an EEG to monitor her seizure activity earlier this year

Miss Z having an EEG to monitor her seizure activity earlier this year

Yesterday Miss Z and I met with a new doctor – a neurologist who specialises in the ketogenic diet.

What is the ketogenic diet you ask? In short, it is a special high-fat, low-to-no carbohydrate diet that is sometimes used to treat uncontrolled seizures.

Normally, your body breaks down carbohydrates to glucose to fuel the brain, but when there are not enough carbohydrates, it begins to break down fat reserves, which produce a by-product called ketones. The brain then uses ketones for energy, and for some reason (that no one really understands), this use of ketones  by the brain can reduce seizures, or eve result in a child becoming seizure-free.

Sounds great, doesn’t it? Why have we suffered through four years of seizures when we could just be stuffing Miss Z full of fat and enjoying freedom from fits?

Well, like everything in life, it isn’t guaranteed. The doctor reckons that only around half of the kids who go on the diet experience an improvement. And less than half of that half become completely seizure-free.

And Miss Z is so complex that there is a lot to take into consideration. For example, how will the diet affect her bone density? Since she aspirates her formula, will a formula very high in fat be even more damaging to her lungs? And what affect will it have on her kidneys? Her anti-epileptic medication has kidney damage as a potential side effect, and so does her infusion treatment for osteoporosis. So far she hasn’t shown any side effects, but do we want to put her kidneys under even more stress?

At the end of the day, no one knows how Miss Z would respond to the ketogenic diet. It might be the best thing for her. It might make her seizure-free, which could have the knock-on effects of helping her to swallow better (and reducing the risk of aspiration and chest infections) and be more active and mobile (strengthening her bones and reducing the risk of more fractures). A change in diet might mean she vomits less – although it could also make her vomit more. It might mean that she can be weaned off some of her current anti-seizure medications.

Or it could mean that we try it and fail and the ketogenic diet gets addeded to our growing list of things that didn’t help.

Or, her vomiting could prevent us from maintaining the right level of ketones in her system, which would result in the diet failing to take effect.

And these are just concerns that I’ve come up with so far…

To paraphrase Donald Rumsfeld, there are known unknowns and unknown unknowns to putting Miss Z on the diet. It is a real roll of the dice.

Still, I think it is worth taking a risk – a cautious, calculated risk – if we could get Miss Z seizure-free, or even seizure-reduced. It could have huge benefits not only to her health, but to her development and hence to her quality of life.

This is my hope.

The diet isn’t easy – it requires a lot of commitment, organisation and effort from me, QB and everyone else who has a role in caring for Miss Z. She will need to be fed very specific amounts at specific times and montiored closely to ensure that her body remains in ketosis. This will be a big change for us as we tend to be fairly relaxed about Miss Z’s feeding routine at the moment.

So, tomorrow the testing starts to make sure that there are no underlying issues that will prevent her from going on the diet. And the week after that, I will keep a food diary for her – including keeping track of how much she vomits in a day. Then the neurologist and dietician draw up a plan, with the expectation that we start the diet in January/February.

She will be closely monitored on the diet for three months, after which the doctor and dietician will review her to decide if she is benefiting from it. If she has shown improvement, she will carry on with the diet, if she hasn’t, they will wean her off it.

Its a roll of the dice, but fingers crossed it will be worth it.


One response to “Rolling the dice

  1. Pingback: A rare life – day 11 | oneofthewonders

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