Brianna's RE Journey

Brianna had been diagnosed a rare brain disease called Rasmussen's encephalitis. She had a functional hemispherotomy Sept. 28th, 2023.

August 25th, 2022 Brianna was diagnosed with epilepsy due to her having night time seizures after being admitted to the hospital for 5 days. Then on Sept. 26th, 2022 she was admitted to the hospital again for 8 days which is when we found out she has Rasmussen's encephalitis. Her first seizure was 8-15-2022.

Rasmussen encephalitis (RE) also called Rasmussen syndrome is a rare, progressive, chronic encephalitis (inflammation of the brain) affecting one side of the brain. It occurs mainly in children and effects healthy children after an illness. The progression of the symptoms to significant neurological impairment usually occurs within weeks or months to a few years. In the long-term, the disease is usually expected to ‘burn itself out’ but not before the patient is left with significant hemiparesis, visual field loss, learning difficulties and, usually, on-going epilepsy. Unfortunately, either quickly or slowly, children begin to show difficulties with learning.

Surgery such as Hemispherectomy is the only cure for the seizures caused by RE. Hemispherectomy is a disconnection of the affected side of the brain from the healthy brain which is done by the removal of half her brain. There is only about 500 cases world wide.

Treatments prior to surgery they tried too slow the progression of the disease. By taking several seizure medicines which Brianna is on two of them (She's tried 6 different ones) Brianna is doing IVIG treatment (intravenous immunoglobulin) every 3 weeks which I'm hoping will help her and not be in pain and steroids which has helped so much but she cant stay on them forever. Also tried 2 infusions of Rituximab. Which did seem to help for 2 months then stopped working She was pain due to her having non stop seizures which are shown in her leg that jerks all day long even when she's sleeping. She also will be doing MRI'S to check to see if the deterioration of her brain every few months that she has to be sedated for.

Brianna will be doing Intense inpatient rehab till she can walk and move her arm again. At the moment her entire left side is turned off due to disconnecting half of her brain. 2 things Brianna will never get back is her fine motor skills in her left hand and her peripheral view in her left eye. She will be able to see right in front of her but if you standing on her left side she will not know you are there. She has a very long road of recovery but, she is a strong and determined little girl. I know she will do great things and overcome all of this.

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BriannasREjourney

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