Hi My Name is Laurie & I have a 13 yr old called Caris with Aicardi syndrome. I also have Joshua who is 3 and Lily who is 7 months.. as you can imagine life is quite manic for us. But I have been wanting to share some information regarding caris for a while as feel its always nice to share positive news. Caris was diagnosed with aicardi syndrome when she was 8 months old, after several seizures and phumonia. Caris was also born with 3 holes in her heart, a horsehoe kidney and a deformed right arm. At the time of diagnosing caris, I was led to beleive that she would not live past her 1st year of life, she is now 13 and remarkably healthy all things considered. Although caris has had alot of health problems over the years, and many a stay in hospital she has always kept a smile on her face and taken this in her stride. Which just adds to her magical personality & strength. Caris is currently on Lamotrogine 150mg twice daily, which seems to be keeping seizures to a minimum, there is no pattern to caris seizures, they seem to happen as and when, but over the years we have noticed that keeping a strict routine of bedtime and waking seems to help. If caris gets overtired or is to late to bed this can result in a seizure. Caris is in a wheelchair, but can walk for short periods, stooped with very low muscle tone. She tends to get round at home on her knees as if they were feet.. her poor knees over the years are now looking quite flat but enables her to be independant at home..She can have a conversation with you, although her speech is not always clear, she has quite a good understanding of a question, but can sometimes get confused and come back with answers out of context. Caris has to have adult supervision all the time, but enjoys the 121 contact. Would love to hear from anyone in a similar situation.
With love Laurie & Caris x