AE is a rare disease which doctors say scientists have very little facts on the disease and it’s been about a little over 10years of which they have been treating this disease.
AE occurs when the body’s immune system mistakenly attacks healthy brain cells leading to swelling of the brain. This disease has caused Yliana to have various neurological and psychiatric problems. During her “episodes” of aggression she would harm herself and others. During her episodes there were always possibilities of seizures and her heart rate would easily reach 200. Pretty much her brain was fire and she had no control of it.
By the time we reach TCH, Yliana could no longer walk, eat or talk. The Doctors at TCH requested a LP exam to insure Yliana did not have an infection so they could start her on Treatments immediately to decrease swelling of her brain and decrease her aggressions.
After a month of tests, exams, meds, (8) IVs, PICC Line, feeding tube and the unknowing, Yliana begin to slowly show symptoms of recovery. She started to point at things she wanted, begin to laugh and smile again, sitting up by herself, less agitation and taking baby steps.
After over a month she has finally graduated to rehab. She no longer has a feeding tube or PICC line. She is eating by herself and walking with assistance. Yliana is still unable to talk and if she does say something it’s very soft and under her breathe. She is still receiving Weekly treatments and This will continue for months.
At this time we do not know how long her rehab will be or treatments. Since this a rare disease the doctors can not even tell us how many months or years will it take for her to recover fully and that’s if she does recover fully.
We will continue to keep her treatments and follow ups here at TCH because we feel this is best for Yliana and her recovery.
We are doing a GoFundMe along with a fund raiser with shirts to help with the medical expenses and travel expenses to get our girl better. As well as bring awareness to Autoimmune Encephalitis.
We Thank you all for for your support, prayers and positive thoughts.
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