00:00This was my daughter in 2019. As you can see, she was the life of the party. She was happy, social, outgoing, loved hanging out and being around people.
00:09Small changes started happening, like she started talking to herself and she stopped answering my questions. Her eyes would shake back and forth.
00:17She started to cry in pain and I didn't understand what was happening. She wouldn't look at me. She was caught up in her own head and didn't understand what was going on around her.
00:26But that was just the beginning. Things only spiraled further.
00:30She started to wear a hat and sunglasses and a jacket, even though it was 110 degrees. She started to do really weird OCD movements.
00:38She would throw her hands in the air or shake her head. And every time I asked her if she was okay or if she was in pain, she would respond with, I'm fine.
00:47You okay?
00:48Yeah.
00:49With a gut feeling that something was wrong, she pressed the doctors for the truth.
00:53I was able to find a doctor that ordered an MRI. On the way home from the MRI, she curled up in her ball and cried. This completely broke me. This was the point that I said enough is enough. And I took her to the ER.
01:05This would be the beginning of many hospital stays. They wouldn't take me serious. The doctor wouldn't even come in to see us. I had to beg for a spinal tap. They decided to do their own. And then the next morning, they called me with news that I needed to return to the hospital right away.
01:19Finally, the hospital admitted what she had suspected all along.
01:23We're just calling to let you know that your daughter needs to be admitted to the hospital right away. We're so relieved that we finally have something. But, you know, we're really hopeful here. How long is she going to be in the hospital?
01:37Her spinal fluid came back positive for Klebsiella, which is a pretty gnarly bacterial infection.
01:43Every day was hard. She was slowly slipping away from me. She had another MRI, another PET scan, a CAT scan. We left there with two official diagnoses. One of Down syndrome regression disorder and one of Hashimoto's encephalitis.
01:58We were able to make it home for Christmas, but things did not get better.
02:03She shares the real meaning behind a Down syndrome regression diagnosis.
02:08So regressing just means losing skills and going backwards. Regression. Down syndrome regression disorder, that's just what they name it because truly they have no explanation for it or why it happens.
02:19In December, it got the lowest of low where she would not move, talk, walk. She just wanted to lay around. It was really heartbreaking to watch.
02:27We did check back into the hospital where we finally were able to start IVIG. We begged and pleaded to start ECT. It is the only thing that worked right away and was able to pull her out of the catatonia.
02:43At this time, we were going up the six hours, back the six hours. The back and forth was exhausting. I had other kids at home that I needed to be there for, but I wanted to do this for Tessa.
02:56We started to see the old Tessa come back. We started to see a new light in her eyes. She was interacting with her siblings. She was finally dancing. I was able to see a glimpse of her coming back and it made me very hopeful.
Comments