I am writing this post with great sadness as I have heard today that a child we knew with Late Infantile Batten Disease passed away suddenly at the end of last year. This dear child was only 9 years old. It has brought home the horror I felt when Sacha was first diagnosed in August 2005 and all of those feelings have come back to the surface today. I feel distraught and bereft.

 Although Sacha’s health has been great since our return from China she has not been so good in the last couple of days and has been very jerky and off her food. She had a seizure on Sunday morning although it wasn’t a big one. Over the past 2 evenings her legs have been shooting out in front of her uncontrollably and she has been shaking like crazy. We have been reducing her Phenytoin and Piracetam very slowly which she is adapting to well but I think we need to look again at her meds to control the shaking. Sometimes though we just have to accept that she goes through these phases of change and comes out ok on the other side so we won’t make any hasty decisions.

I’m trying hard not to focus on the dark side of this illness but it is difficult in light of the news I received today.

Happy New Year everyone. We’ve had a lovely family Christmas with mine and Graham’s families in Middlesbro and London. Sacha has been an integral part of the proceedings and everyone is glad to have her back safe and sound after her long time away in Beijing. For anyone who’s interested, the medications she was given on discharge are: Vit B2. Compond Vitamin B tablets, Flunarizine hydrochloride tablets, cerebroprotein hydrolysate tablets and levocarnitine. We have given these to her alongside her Western meds and Sacha is doing very well. Her appetite is very good and her energy levels have definitely increased over the holiday period. She has alot more movement in her legs and upper body and almost can’t seem to keep still. She was awake until 1 am this morning - which is a personal best for  her and one that I hope doesn’t continue!!

When she first returned from China on 14th December, she was very jetlagged and spent most of the proceeding days asleep but is now very alert. She appears to be listening and responding to our voices more keenly and is vocalising alot more than she did in China. All in all a very happy and contented girl. We will be monitoring her progress over the next month to try and determine the effects of her sct so I’ll write the next report at the end of January.

Happy New Year everyone. We’ve had a lovely family Christmas with mine and Graham’s families in Middlesbro and London. Sacha has been an integral part of the proceedings and everyone is glad to have her back safe and sound after her long time away in Beijing. For anyone who’s interested, the medications she was given on discharge are: Vit B2. Compond Vitamin B tablets, Flunarizine hydrochloride tablets, cerebroprotein hydrolysate tablets and levocarnitine. We have given these to her alongside her Western meds and Sacha is doing very well. Her appetite is very good and her energy levels have definitely increased over the holiday period. She has alot more movement in her legs and upper body and almost can’t seem to keep still. She was awake until 1 am this morning - which is a personal best for  her and one that I hope doesn’t continue!!

When she first returned from China on 14th December, she was very jetlagged and spent most of the proceeding days asleep but is now very alert. She appears to be listening and responding to our voices more keenly and is vocalising alot more than she did in China. All in all a very happy and contented girl. We will be monitoring her progress over the next month to try and determine the effects of her sct so I’ll write the next report at the end of January.