Exceptionally brief background for a situation that can't be brief - my DD (9) has been disabled since birth. She has had ever worsening seizures and was diagnosed with epileptic encephalopathy just before her 6th birthday. Since she was 3 weeks old, she has been on fifteen different seizure medications not all at the same time but they do not stop the fits. She has in excess of 100 brief seizures every day, and her brain is in constant seizure activity while she sleeps (according to the last long term monitoring that was done at the specialist Epilepsy Monitoring Unit). She is losing skills academically and her behaviour is becoming very challenging.
Her local neurologist saw her last week and suggested we send her to the largest Epilepsy centre in the country for a new opinion on her treatment and potentially assessment for neurosurgery. Because of the size and demand for this centre, the wait to get in for even the first visit is well over a year.
Neurologist called first thing this morning and said she had been talking with the complex epilepsy team in London, and they are taking DD's case to their conference THIS WEEK. She wanted to know if we were ok with them discussing her and accessing her records (privacy matters) and if we would be able to "mobilize" if they deemed her an assessment candidate. I spoke to DH, and we have consented.
I am shitting myself. The assessment can be very invasive, and surgery even more so. However, epileptic encephalopathy is a "malignant syndrome" - surgery is no guarantee, but without surgery, she will only continue to deteriorate.
AIBU to feel totally trapped right now?