Seizures suck

I was almost going to call this blog post ‘Missing in action’ as that’s how I feel I’ve been lately. But this title sums up our mood quite well!

We had our brief spell in hospital in early January for Samuel’s seizures and since then it’s true to say that things have been consistently rocky seizure-wise with perhaps one exceptionally good week thrown in.

It’s been tough. In fact the rough patch started just before Christmas but then Samuel had a heavy cold so that made everything worse and we hoped that once his cold cleared things would improve. No such luck.

We found ourselves giving Samuel’s emergency medicine, Midazolam, if not every day, then every other day. So it was decided to increase Clobazam – which so happens to be a sister drug to Midaz. As Samuel is already on such a high dose we only really had room to put it up an extra 1ml a day.

That didn’t really make enough (or any) impact. So we then increased Samuel’s morning dose of Vigabatrin. Whether it was the initial shock to the system of this increase or just coincidence but following that we found ourselves having an amazing week seizure wise. But this turned into just a good blip and we found ourselves back in a pickle again.

So we have this week increased the evening dose of Vigabatrin in the hope that it will have enough of an impact to get Samuel out of this funk. He’s also had another bad cough & cold this last couple of weeks which has just made matters worse.

We’ve also had to reach for Samuel’s sleepy drug, Chloral Hydrate, a few times recently to help calm & relax him. Chloral is normally given at bedtime, but we’ve agreed with his doctor that if he needs it during the day, we can give him an extra dose.

At least we have things in our armoury to keep Samuel comfortable.

And so we wait. Patiently.

And the ketogenic diet? *shrugs* The jury is now out on that one. Yes, he is still on it but not seeing any evidence it is doing much for Samuel. We have a review meeting with his doctor in March so will discuss it then. We may decide to give it another few months & then consider coming off. We’ve recently dropped some of the calories (and will be able to drop some more again soon) which may help the diet be more effective. I want to give it the best chance we can as I know if the diet works it can be a complete game-changer.

So that’s us. Over and out.

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2 thoughts on “Seizures suck

  1. Ah, sorry to hear you’ve been having such a rough time. It probably is the time of year when bugs are around the most. Will keep fingers crossed that we get more of the sunshiny weather and everything gets better for you all x

  2. Thank you so much for your update, always think of you when you’ve not blogged in a little while. Your title says it all, my God they really truly suck. I just hope you have a visit to Julia’s House to look forward to soon as you must all be absolutely exhausted. Keeping you all in my prayers x x x x

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