Well last Wednesday we went for our appointment at Bristol, Frenchay. We saw the Neuro and the Neuro Surgeon about the VNS for Amber, the upshot being she will be going on the list, it is around a 12 week wait. We also re-started her first medication, Phenobarbitone, and will start the modified Atkins diet in April.
Amber was really unwell the last couple of weeks with Sickness and the other!! but she seems to be coming out of it. I think her seizures are definately better than they were on the Pheno, but because we have been battling constipation the last few days this has definately had a impact on her control. The pheno is definately making her more sleepy and a couple of times she has had a power nap of three hours!
When we saw the Neuro last week he asked us to think about Vigabatrin, it is a medication that is primarily used for Infantile Spasm. This was talked about in the early days, but it does have a side of effect of reducing the visual field. I have always been very vary of it, but having read some personal stories, I think we MAY have to give it a go, not least to rule it out if it doesn't work.
Yesterday Amber went swimming in the new sensory pool at school it was lovely to see her with her new teacher, and her teacher kept saying how gorgeous she was which was lovely. Amber hasn't been swimming in such as while I was surprised seeing how well she was kicking her legs, she really is a true water baby, always has been.
No comments:
Post a Comment