Link with other parents in South East Kent, England

Hello, we live in Ramsgate, South East Kent, England. I would really like to link with other parents of children with Chiari in the area for support and info. My son is 8years old, he’s been diagnosed with Chiari Type 1. King’s have advised surgery. Would just like to know how other families have got on…this is all very new to us, we feel bewildered by it all. Are there any local families who have been through this or are like us about to begin this journey… Thank you

Hi Jeanine

I live in Hertfordshire. My 19 month old son was diagnosed yesterday. So I have no information to help you but as a fellow worried mother beginning this journey, I’m here if you need to talk.

Jamie xx

Hello Jeanine and welcome!
I am not on here all of the time but just read your post.
Very sorry to hear about the diagnosis with your son. It is great that technology is finding this condition early in life. I was diagnosed at 40 years of age, so then syringomyelia had set in.
Possibly, you might want to read some of my older posts on irritants with the Chiari. These are things that might trigger easily the Chiari headaches with your son. Foods with high amounts of sodium (canned soups, hot dogs, etc), hot weather, large amounts of sun light, high energy atmospheres with many people (possibly even school), smelly perfumes and air fresheners too can all trigger the chiari headaches as well.
Also, having the Chiare often feels like the same disorientated feeling you feel when you come up to the top of water after swimming below water. You constantly have to get used to your surroundings (very tiring!) and you might even notice your soon is jumpy or gets spooked easily if approached, tapped on the shoulder etc.
Hope this information helps you.