Sunday 11 May 2014

He can smile through them

I escaped to Rome for a few days, without any children or partner. You know, as you do. Well really it was part of my month of jubilee celebrations to mark my 40th birthday. I loved Rome, I loved the break but then I came back to draaaammmmaaaa.

Oh, that pain in the arse seizure city is back taunting Zack. Thing is we don't know if they are seizures or muscle spasms or a Zackism. They look very much like the seizures he had in November over a year ago. He ended up in hospital for three days pumped full of every conceivable drug, which, in the end, didn't stop them attacking him. It turns out following an EEG they weren't seizures and shortly after they stopped as suddenly as they had appeared.

At the moment we are in week three of these little beasts, that force him to go into a tight spasm of thrusting his head back and straightening his right arm, this batch of stiffen and release last for about 2 - 5 minutes with 20 - 30 minute breaks in between. I'm exhausted watching him, he must be fed up doing it. However, unusually he can smile through them, he is conscious and when he sleeps they disappear entirely.

We went for a meeting with his consultant and we agreed to give him an EEG to find out what's going on before we medicate or change medications. For the moment I have agreed to start him on a very low dose of Baclofen. A muscle relaxant drug, in the event that if they are muscle spasms then we have already begun treatment. I was very opposed to this drug as I don't want it to affect his muscle tone as his sitting and head holding is excellent. So far the small dose has made no affect on his tone and no affect on the "seizures".

The only other thing that is similar to this batch is that he has been very snotty, high temperature too. Our thinking is that he has or has had a virus which has caused his body to react in this manner. He seems to follow a pattern of this, some viruses affect him and some do not.

Wednesday we go for the EEG and hopefully, we can get a plan in place. 


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