I have absolutely no idea where I should start with what I want to say, what I want to tell you. In my previous blog post A day to remember, I told you that for one day last Friday, Samuel had no seizures. None. Zilch.
I couldn’t understand it because his ketones were so low (to anyone new reading this, Samuel is on the Ketogenic Diet – pop over to my ketogenic blog posts page for a quick round-up of what’s it all about), so it couldn’t be the new diet.
But it wasn’t all plain sailing. He was miserable. Grumpy like I’ve never seen him grumpy before. But by Friday evening we realised why. The area around his gastrostomy site was very red, angry and sore looking. Plus the tip of one of his little fingers was very red too. We took him into hospital Saturday morning (and spent 5.5 hours there waiting to be seen and then waiting for antibiotics) and were told that he had a skin infection.
That would explain why he was so very grumpy. And we discovered that infections can reduce ketone levels which is why his ketones were so very low. (For those who still haven’t got their heads around ketones or haven’t been over to my Ketogenic pages to find out more – basically we need Samuel’s ketones to be high and at a consistent stable level for him to be in ketosis and therefore for the diet to work).
But dear reader, and perhaps this is the point of the post, so well done for sticking with me, you will be rewarded, Samuel didn’t have a seizure on Saturday either. And this time his Dad was there, so I have a witness. He didn’t have one seizure on Saturday. And Sunday? Sunday he did have a one minute seizure but that was all. That was all. Samuel has severe ‘off the scale epilepsy’ (to quote his padetrician) and has seizures every single day. Well he did.
And today? I’m not going to jinx it, but so far he’s had two 30 second seizures and that is all.
So is it the new diet? Is it actually working? I still can’t answer that. And it’s not me being coy or over-cautious, I just really don’t know. His ketones are low, very low, so the diet shouldn’t really be working. But it makes me wonder if Samuel is again making up his own rules, even for this new diet.
I might blog again and tell you that we’ve had a shocking evening tonight, had to give him his emergency medicine (Midazolam) and the rest of the week is dire. It is normal for us to not have two days the same. What is normal is to have two dramatically different days. So I’m confused. Feeling rather shell-shocked actually.
But to sit here with my precious boy and not have to watch his little body twist and stiffen, his arms and legs jerking manically, him screaming and crying, is an overwhelming, wonderful feeling. I wish I could bottle it.#
I’m not sure if the Seizure Monster has just gone away on a short holiday and left his lazy assistant in his place. The Seizure Monster may be missing. But we aren’t missing him.
UPDATE (15/05/12) - Samuel didn’t have any more seizures after I posted yesterday, so that was just two small ones he had yesterday. Today? Well, it’s 8pm and Samuel has only had three very brief seizures today. You may be thinking, ‘well three seizures, that doesn’t sound good’. But three very short seizures in one day, for Samuel, is brilliant. Whatever happens tonight or tomorrow, I am such a very proud mum.
More information: If you want to find out more about the Ketogenic diet, please have a look at Samuel’s Ketogenic journey and you can also read a round-up of all my blog posts about Samuel’s Ketogenic adventures. Matthewsfriends.org is a fantastic resource full of really useful information and case studies about the Ketogenic Diet.