Downward cycle

Bah. Humbug. 

Not you Christmas. You, you pesky seizures. 

Zack's seizures have gone into over-drive so much so that on Friday we were on the phone to the hospital to see if we should bring him in. He should have open access to the children's ward so that we don't have to hang around A and E explaining all the ins and outs of Zack.

Oh hang on a minute we aren't in the books any more. Nope according to the nurse because he hasn't been in for a good while his name's not down and he ain't coming in. Her advice, you'll have to go to A and E.

Great. At this point I leave a message for the epilepsy nurse who kindly gets back to me and we get an appointment to see the consultant that day (you can't knock em for sorting us out). By the time we get to the appointment Zack has had well over 70 tonic spasms. He goes very straight and stiff, arms out stretched head back and pursed lips. They last at the most 10 seconds. They don't bother him and cause (according to the doctor) no lasting damage. It's just  if he continues to do these constantly then it's going to affect his development. 

The outcome of the meeting with the consultant is to up his meds, wait and see how this goes, wait and see if he has any underlying infection brewing and see the neurologist on Thursday.

Well, it's now Monday and I've lost count of how many seizures Zack's had. We've given him a small dose of chloral hydrate to break the cycle and get him off to sleep in the hope that tomorrow will be a better day. 

Every so often we get stuck in this downward cycle. It's a bit like his medicine has been holding the door  tight shut and his seizures have been banging on it trying to get back in. Now they've finally broken down the barrier. 

I am confident we can try something else that may help for a while. Whilst I am worried I am not overly anxious, I think we can win again. Besides we've had harder battles than this. 

As a footnote Zack is still very smiley and still finds me hilarious. When I do something it's a laugh like this ahahaaaaaaa haaaaaaaaaaaaaaaa haaaaaaaaaaaaaa huuuuuuuuuuh. 
When his dad tried to entertain him in the same way I swear he just made this sound.....Huh. 

Enough said, I am obviously the funny one.


Popular Posts