ESES diagnosis in daughter
Our daughter would had a tendency to day dream, but otherwise was a very happy, healthy, active little girl. She is just over 9. On Thursday we became alarmed when her piano teacher said she was disoriented in her exam, confused her hands and then forgot that she had actually already sat the exam. We are very fortunate to have been able to take her to a paediatric neurologist the same day. She did an EEG and we were told that she probably has childhood absence epilepsy but that we should follow up with an EEG while she is sleeping which was arranged for Saturday, just two days ago. The EEG revealed that she has almost constant activity while sleeping and that it might be ESES. We expect the prognosis is week. The MR results were good we are told. We have read alarming things about ESES, the potential for deterioration in cognitive abilities, the low likelihood of treatment success etc. can anyone share their experiences? She seems to have CAE type symptoms when awake, but ESES when asleep. She has never had a visible seizure and she is usually highly alert and happy. She is the one that everyone goes to when they are tryi g to remember details of places, events, what people were wearing etc. that being said, over the past few weeks she has been more withdrawn, and her teachers told us that she has been having trouble focusing, she falls asleep in class, and she doesn't always seems to register what they said, ie they thought that she wasn't paying attention, and that she was day dreaming
The neurologist said that she has treated similar cases in the past but there is no certainty.