A new diet

IMG_0630 R had a better day today. Her walking is still unsteady (sometimes she was unable to walk at all). She’s still tired and feeling sick. All the same, today was a better day: after months of frequent seizures, many of them frighteningly long, today she had just one short seizure.

Only yesterday, the neurologist said, wryly, that the most positive thing that could be said about R’s current medication regime was that it had kept her out of hospital for 24 hours*. She is on her sixth epilepsy medication (three have been discontinued; she remains on three) and has been diagnosed (euphemistically) with “difficult to treat epilepsy”. It has been made clear to us that the likelihood of finding a drug that will control her seizures reduces with every new medication tried.

Before neurologists had anti-epileptic drugs, there was the ketogenic diet, a hard-core version of the Atkins Diet. High fat and low carbohydrate, the diet aims to mimic starvation. Improbable as it sounds, by doing so and encouraging the body to produce ketones (by burning fat and not carbohydrates) significant reductions in the number of seizures are seen in some patients. Fats, carbohydrates and proteins are strictly limited on the diet and the relative proportions of these must be tightly controlled. It’s not an easy option. The diet fell out of favour with the arrival of the first pharmaceuticals but more recently it has been used in children with seizure disorders that have not responded to conventional drug treatments. It is thought that more than half of patients can benefit from the diet to some degree. Perhaps 1 in 10 patients become completely seizure free.

We mentioned the diet to R’s doctors three weeks ago (during her last-but-three admission). If I’m honest, (and even though R’s neurologist leads the ketogenic clinic at the hospital) I expected the doctors to dismiss the idea. They didn’t. They said that it was worth a try. Indeed, while one of the drawbacks of embarking on the diet for patients is the lengthy (sometimes several years long) waiting-lists, R was started on the diet as an emergency.

R has been started on the MCT version of the ketogenic diet. This is a slightly kinder version that allows her her morning cornflakes. In this version, 40% of her daily calories will come from MCT oil, an oil that encourages ketone production more readily than other fat sources. MCT oil is difficult to tolerate and the run-in period to the diet is quite long. R reaches the full dose tomorrow.

It may be a coincidence that R had a good day today. It may be unrelated to the diet. But I can’t help but think (and hope) that perhaps the diet is helping.

*Signs that your child is being admitted to hospital far too often:

  • The paramedic says that he picked up the call because he recognised the address.
  • No-one in A&E takes a long history on arrival because they know the history already.
  • The nurses select the correct floor when you enter the lift without being told.
  • The staff in the café offer you a loyalty card.
  • You can actually sleep on the ward.

New developments

Please forgive any typos in what follows. I am writing this on my phone, perched precariously half-on, half-off R’s hospital bed. R is sleeping but her sleep is not sound. She needs to know that Mum is right next to her. When I started this blog, I wanted to share the good things that happen. I wanted a place to save these to leaven the days when the not-so-good things happen. Good things do still happen. R’s new carer (awkwardly for this blog, also R – so I’ll call her C) is a very good thing. R and C spent the first week of the Easter holidays shopping, going to movies, taking selfies in their sunglasses, generally having a good time. R enjoyed the brief hiatus from the seizure clusters that brought her back to hospital over a week ago. In a few long months, I have gone from feeling confident and expert in R’s care to feeling vulnerable and really inexpert in the management of her epilepsy. We have learned that epilepsy in neurological disorders like Rett syndrome is notoriously hard to control and that bad as things are at the moment, the neurologists are pessimistic about any improvement. We have learned that R is very sensitive to several of the medications commonly used to arrest long seizures and clusters of  seizures. R hasn’t had a seizure in 48 hours (another good thing) but she isn’t going home yet because she has stopped breathing too often for her doctors to feel confident about discharging her. Oxygen monitors are in too short supply for us to be given one to take home. (Politicians  – for all your claims about increases in funding for the NHS, I’m afraid to say that the benefits are hardly being felt in paediatric services. This might not win you quite as many votes, but in my view being able to provide machines to monitor a  child’s breathing overnight should be just as much of a priority as funding expensive new drugs to older adults. Just a thought). So here we are. And here we are likely to stay for a little while yet.

Update (6 May 2015)

This morning G phoned a charity called The Daisy Garland.  This charity supplies oxygen saturation monitors to children with epilepsy who need them. They generally meet to consider applications 4 times a year, however, G explained our circumstances and the lovely lady at the end of the phone said that they might be able to consider R’s case as an emergency.  This afternoon they emailed to say that our application was successful.  With a fair wind, we should have the monitor on Friday and R will be able to go home.  A really, really good thing.