Sunday, 8 November 2009


ok again its been a while x mummy has been so busy with me and she has also been unwell but she ok now xx silly flu xx so not much happening my end really started the ketogenic diet not much change tbh but its early days still been extremely quiet which mummy isnt happy about but other than that all is ok xxx

Sunday, 4 October 2009

well after a few weeks almost seizure free (only had 1 or 2 every few days sometimes longer) i think things are getting back to how they were he has had 10 tonic seizures today :( but well i guess you cant have everything hey x otherwise he is on good form since he got over his bug which took a week he has been happy smiley and full of love and kisses which has been special xxxxx

Thursday, 17 September 2009

well once again i apologise for the gap in updates but well im forgetful lol and to be honest most of the time nothing changes xx

james has had a rough ride lately a couple of weeks ago his seizures were just awful and he ended up in AnE in pretty bad shape and needed several meds to sort him out !!! it was a very scary time for me and james's dad i can honestly say i have never been so terrified in all my life they were talking about hdu and if they couldnt stop the seizures and had to keep giving him meds he could possibly need venting as the meds are all muscle relaxants and there are always risks it was extremely scary xxx

since then he has been much better his seizures are very minimal but on the downside he is extremely quiet which always worries me especially when i know how vocal he can be xxxxxx


Friday, 28 August 2009

well all in all .things are ok had a bad day today seizure wise ended up having his rescue med at lunchtime poor soul xx

had eye hosp today so he doesnt need to wear his glasses anymore squint still the same but always is and more so today as he was having a lot of seizures xx

have talked previously and again today about an op to straighten his eyes not sure how i feel about it doc isnt comitting but says because of liss and seizures it may not help or could for a while

if anyone has experience of this id appreciate ur thoughts would appreciate them even if u havent been there xxx