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.

Comments

Hi Linzi, just catching up I hope things are improving. Was it Dr Curran who suggested the Keto diet? Is Zak peg-fed (sorry I can't remember!) The Keto is something Im desperate to try as I know they can do it even with peg fed kids now, but it's super expensive so they may be reluctant. I am having a TED today after Epilepsy ruined our day again. I really do struggle with it ;-( Anyway also wanted to say how awesome Zak looks with his blow dried hair! Hee hee made me chuckle. Lots of love xx
Hi Ruth

Yes it was and yes Zack is peg fed so probably easier to get the food down him. I do know that they do a powder formula version of it so no measuring etc.

Sorry to hear about the epilepsy getting in the way it's just rubbish when it takes over. Nothing useful anyone can say is there, it's just one of those rubbish things.

Fingers crossed things improve.

Hugs

Linzi
xx

Popular Posts