When my daughter was 10, she had her first tonic-clonic seizure. Soon after, she had another and then another, and 1 1/2 years later, she was diagnosed with both generalized and focal epilepsy. After one year of continued daily seizures, despite trials of 4 medications, she was diagnosed with refractory generalized and focal epilepsy. She was referred for epilepsy surgery evaluation at the Mayo Clinic, in Rochester, MN. After countless tests and capturing many seizures in the EMU, we learned that because the seizure activity was coming from many areas throughout her brain, she was not a candidate for epilepsy surgery. She had multiple cortical dysplasia and polymicrogyria.
A few more years passed with thousands of seizures. We needed to withdraw her from her brick-and-mortar school to complete her education through virtual learning because she continued to have many daily seizures. We again went back to the Mayo Clinic for another epilepsy surgery evaluation, where she had a SEEG (stereo-EEG, implantation of depth electrodes), MEG, MRI, fMRI, SPECT, CT, another VEEG, and a PET. We learned that the only option for her was surgical implantation of a Deep Brain Stimulator in multiple areas of her brain, specifically the thalamus. The device would be implanted in the chest wall. That was in 2017.
A lot has happened since then, and I continue to advocate fiercely for my daughter and other epilepsy families at Lurie Children’s Hospital in Chicago. I am committed to raising awareness and educating people throughout Chicago on seizures, epilepsy, treatments, and seizure safety through my work at The Epilepsy Foundation Greater Chicago. I look forward to working with PESA in supporting families who are considering options beyond medications, to help their own children in their fight against epilepsy.
It is so, so hard to go through this. Leaning on this community will give you strength and hope. The burden is heavy; that is why I’m passionate and committed to helping families shoulder the weight.
Languages spoken: English