My daughter Sophia (2 yrs old) was a very healthy and intelligent little girl. She was walking, running, climbing, talking completely. Until about a month ago out of nowhere we started suffering from seizures. There was no fever or sign of illness. The doctor said she had partial complex seizures. The CT Scan, and MRI showed no signs of abnormality. Only the EEG showed slowing in the right frontal lobe of her brain. The medications she has been on is Keppra, Dilantin, Trileptal, and Ativan. Since she started on medication, she had a lot of very agitated, irate, uncontrollable episodes where she was confused and would inflict pain on herself (scratching, biting). She also continued to have moments of being spaced out and disconnected, and moments where her body or parts of her body would stiffen, some more severe than others. The doctors first said this was probably side effects from the medication, which is why we had to stop and switch her medication after a few days. A week after trials, we brought her to her neurologist and he witnessed one of these agitated episodes and diagnosed that those were a type of her partial complex seizure. We continued another trial of Trileptal with Ativan. About 5 days later I brought her to the ER since there was no improvement and more frequent episodes. She was no longer able to walk on her own, she was hardly talking, she was constantly moving involuntarily (looks like muscle spasms) even when she slept. She was also restless, loosing sleep and had loss of appetite. She even had trouble chewing food. We were admitted, had another MRI. She was on an EMU for 3 days. And took several more tests. By this time, we are in our 3rd week since she started her first seizure. the EMU read activity that were seizures, but during the times she was having her agitated episodes, the EMU read that these were not seizure activity but some kind of abnormal behavior in the brain, which was frequent. The results from the MRI showed complete change in her brain globally.
SO FAR THE DIAGNOSIS: (but not confirmed)
She suffers from seizures, and some type of movement disorder. The bigger picture regarding her brain, the closest diagnosis the neurologist had was that she suffered from Encephalopathy and may be some rare type. The tricky part is that all the tests for probably causes showed up negative.
We can't find the proper treatment if we dont know what is the cause, etc.
My daughter Sophia needs help fast. We are also trying to get a 2nd opinion but I'm trying to reach out for help in different areas. I am trying to get results ASAP because my daughter's deteriation has progressively gotten worse within only a month's time-frame.
PLEASE IF THERE IS ANYONE OUT THERE WHO MAY HAVE EXPERIENCED THE SAME OR SIMILAR CASE, OR IF ANYONE HAS ANY INFORMATION THAT MAY BE OF HELP TO US, PLEASE RESPOND.
A very desperate mother trying to save her baby Sophia,