Samuel’s curved ball

So after a year of plugging away at the Ketogenic diet and getting increasingly frustrated that despite our efforts and making what Samuel’s BUPA carers call ‘a chemistry experiment’ four times a day for his feeds, it didn’t seem to be having any effect at all. But I was so keen to give it as much chance as possible, I would regularly be saying to the paediatrician Dr H ‘could we just give it another 3 months’.

But then we talked about it and I came to realise it wasn’t making any difference and his feeds were a lot of hassle for no result. Plus I wanted to go back to giving Samuel the odd sensory taster without worrying it would ruin the diet. So I emailed Dr H with some urgency saying we wanted to put the diet behind us & move forward & ‘can we start the plan to wean Sam off the diet’ – which he had been suggesting for a while.

Then we had a really good weekend seizure wise. I mean REALLY GOOD. Then we had a really good week, then an almost seizure free weekend (may I remind you we are talking about Samuel. The boy who has multiple seizures every day – could range from anything from 5 to 20 seizures a day). We are now coming to the end of another good week (not seizure free but still bloody good).

Is it the diet? Is it because he’s put on more weight again and he’s outgrown his current recipe? Is it a very delayed reaction to the last diet tweak?

Or is it just a very good patch? We have very bad patches for no apparent reason, so could this just be a good one?

This might all change in a couple of hours and tomorrow could be an awful day. But I’ll take this good patch for as long as it lasts. Samuel has never been one to follow the rules, ever, and in fact that has what has kept him doing so well for so long. It’s what’s kept him here with us much longer than expected.

And as for the diet, think we might just stick with it for a while longer. Who would want to rock the boat when the going has been so good?!!


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