I wonder if anyone can offer advice.
My niece in South Africa (22 months old) has had fits for most of her life. For a long time they thought she had viral meningitis and she had long spells in hospital every time she had a temperature and/or a fit. Now, they think it is epilepsy. The problem is that the only care and advice they are getting is from the community hospital. The doctor they are seeing only visits the hospital once a fortnight as a favour so you can imagine how many other patients he has to see.
DH and I desperately want to help but are not sure what to do. We are helping financially so they have a phone and car to get to the hospital but it would be wonderful if we could help with knowledge but it is something we have no experience of.
To make things worse, the seizures seem to be becoming more frequent and it is affecting her balance. She is also on lots of medication and has had countless lumbar punches and ecg's.
Can anyone offer us advice on how we could help from a distance?
Perhaps if we were to send her to a specialist, what sort of specialist and qualifications/experience of specialist we would be looking for?
What tests should they be asking for?
Any thoughts appreciated. Many thanks.