He actually made him self sick with laughter

Well, it's beginning to look a lot like Christmas.....and somebody has some extra special presents coming his way and (her way).


Seizures are a bit better around 20 -25 a day rather than 80 odd. Still quite fuggy. Nurse suggested we drop one of the Clonazepam doses see if he doesn't need it. We did that. He needs it. 


Noticed he isn't as groggy as before but still quite floppy. However he is finding everything hilarious still. 


For example. Something was so funny this afternoon that he actually made him self sick with laughter. Yep, vomit all over me and all over him. Mind you Christmas cannot officially begin until you've been vomited on by a child. 


Glad he's in a good mood and can't wait for us all to have our Christmas dinner together. Scarlett's first one and Zack's third, he's beginning to be an old hand at it now. Will post Christmas photos after I have recovered from Turkey dinner, chocolates, trifle, mine pies, drink, chocolates, cheese and crackers. 


Happy Christmas everybody have a lovely time.
XXXX

It all goes pear shaped

Seizures have remained excessive. To the point where I just couldn't count them any more as it was depressing, let alone a pain in the arse for Zack.


Fortunately Zack's increase in seizure activity coincided with an appointment to see the neurologist. The outcome was that the Lamotragine no longer works for Zack. They don't know why this happens, it sometimes just stops. With some people they can have a long while of everything being great, pretty much like ourselves, then bang, it all goes pear shaped. 


We have a new plan. Zack is being started on a new drug called Keppra. In the meantime he is also on Clobazam to effectively try and stop the seizures quickly. I think the plan is to keep him on the Clobazam until we get the Keppra up to the required dose. We will also begin to slowly wean him off the Lamotragine.


What we now have is one stoned little boy. The doctors told me that it would sedate him and according to the side effects this lasts for about a week. It's starting to have an affect on his seizures but he isn't as awake as he usually is, kind of in a foggy haze I think. 


Don't get me wrong, the world to Zack is still happy and funny. It's just he's a bit floppy and sleepy looking. When we give him the two at night, he goes out quite quickly and remains asleep through the whole night.....still, every cloud and all that!!!!


I hate seeing him like this, Dan doesn't think he's too bad but he's not like he was before really aware and switched on. Dan keeps reminding me that it's only for a short while to get things  under control and if it carries on we just go back and see what else we can do. He's also read that you can split the dose up, meaning we could give more at night than in the day time. As usual he remains positive and I remain protective. Pleased it's working with the seizures though because I think he was having around 100 a day.


The doctor also asked if we would like to try the Ketogenic Diet as part of Zack's treatment for epilepsy. I'll go into this in more detail when we begin. But we are up for trying anything and I am happy he suggested it as I really would like to give something a go that isn't medication.


Glad things are now a little more steady if not a little more sedate. Actually I think I'd rather like to be in Zack's frame of mind, a hazy Christmas sounds about right.

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.

Oh dear

Whilst I should be doing lots of other important things I got to blow drying Zack's hair.




Separated at birth.

The Pants

Harry One Direction

Zack was so ahead of the game with the hairstyle!!!!

Zack has remained happy

Tis the start of the party season and Zack has already enjoyed the festive spirit with the F.UN Christmas party. His sister was allowed to tag along, she wasn't impressed with the whole party scene at first until after supping her milk. Then there was no stopping her. She also tried to unwrap Zack's Crimbo present from Father Christmas. My goodness little girl, there's a limit to how much the Pants will take.


Here's a pic of Zack with his daddy and his huuuuuge present.

Alongside the festive goings on we have noticed an increase in Zack's seizures. Started at the weekend with lots more of his extended body seizures. They have been steadily increasing but not bothering him so a few calls in to the local epilepsy nurse and an appointment next week should see us with a new plan. I am thinking he has got a bit bigger and heavier and therefore needs to increase his Lamotragine. 

On a good note Zack has remained happy. In fact he is changing a fair bit, he is starting to find lots of things funny. Such as saying hello to him, tapping a plate with a fork, brushing the side of his face, all hilarious. Long may it continue.

Oh and before I go I would like to give a little hello to a lovely lady who reads this blog who has announced some exciting news. 

Congratulations Ms Harvey the Pants approves. XX