Transition to LGS

Well you can probably tell by the title of this thread that the Vigabatrin did not turn out to be our wonder drug. Infact it was quite the opposite. Zaks seizures increased and we started to see new ones developing...not what we were hoping for.
The increase in Epilim was not doing the job, so it was decided that he needed something else. That was Lamotrigine.
Now, we had been warned that Lamotrigine can have a lot of very nasty side effects. One of which was the earily named Lamotrigine rash. Zak had to be weaned on to it very slowly to try to avoid any adverse reaction.
It was successful to a large degree.
After the Vigabatrin Zak was having several new seizures. One of his more worrying ones was one called a Tonic Axial seizure. His entire body would go very stiff, his head would pull up and in line with his body, he would jerk a couple of times and then fall unconscious. The first time we saw this one was back in December 07, but at the time we thought it was an isolated incident.
Along with this, he now had Myoclonic seizures, absences and drop seizures. But thank goodness this new concoction of drugs seemed to be taking the edge off things.
His seizures come and go in severity. He has seizures every single day still, and some days are better than others.
On average Zak has about 30 seizures a day. The majority of them are Myoclonic and absences, but he likes to throw in a couple of the bigger ones every now and then just to keep us alert.
Now, because of this new pattern of seizure (the different seizure types and their frequency) Zak had to go for yet another EEG, just to see what was going on behind the scenes. The news was not good.
Zaks brain is constantly in some sort of seizure activity. Wether he is having a clinical seizure or not doesn't seem to make any difference, his brain is still seizuring on regardless.
His 'normal' background activity is now a modified Hypsarrythmia. But on top of that he now has what they call a 'slow spike and wave' output. This combined with his seizure pattern and his very profound developmental delay/regression, gives him the new title of having Lennox Gastaut Syndrome.
I did the foolish thing when I got home from the Neuro appointment, and googled LGS....how silly!
It did have an upside though. Because of the seriousness of this condition along with the Cerebral Palsy, it now meant that Zak could get access to the local childrens hospice, and we could also get help from a charity called The Rainbow Trust. I will tell you a bit more about these further in to the blog.