Hi there. Last year my DD(9) was diagnosed with subependymal heterotopia.
She was born abroad and the initial diagnosis we were given was that she had hydrocephalus but on returning to the UK, following an MRI scan, it was confirmed as subependymal heterotopia.
I know the basics about the condition and have researched and spoken to the neurologist who is responsible for my DD.
My problem is that I can't seem to find any UK based parental support and information group and I would dearly love to have contact with other parents whose DCs have been diagnosed with this condition.
I would especially like to find out if anyone has gone down the genetic testing route. We have been offered this and had an initial consultation but decided not to proceed at this stage (a decision supported by the neurologist) on the basis that this will not change anything for DD at this point. Obviously when she is older we may have to reconsider.
If anyone has been in this situation or knows of any support groups I would love to hear from you.