Support Dalton, Tina & Trevor

In January of this year; Dalton, Tina and Trevor's world was turned upside down.

This fundraiser is to help take some of the financial burden off of them; for use with hospital expenses, ambulance and medical serivces cost, food when at the hosptial, self care, transition support etc.

Below is an summary from Tina:

Dalton was diagnosed with autoimmune encephalitis (AE). A rare neuroimmunological brain inflammation.

It all started with generalized seizures and foot numbness in January. On his 18th bday in February, he had a follow up MRI and then several more generalized immediately following the MRI in the waiting room and was readmitted. Followed by over 40 seizures in the next 5 days.

This very quickly turned into loss of all comprehension and speech. We thought it was a result of the numerous seizures (post-ictal aphasia). We went back into ER almost a week after discharge as he was starting to present with bizarre episodes and his behaviour was turning into a psychiatric nature (post-ictal psychosis). They turned us away and said it was PNES (psychogenic non-epileptic seizures). Part of us was happy that’s all it was. Keep in mind we had numerous EEG, MRIs and Cat scans at this point.

Back at home for the 3rd time now and we entered full on psychosis, schizophrenia, hallucinations and Catatonia. He stopped eating and drinking, loss ability to know how to swallow and manage his bodily functions. Was speaking to and seeing God. Things declined very rapidly. He was lost. As if he had completely left the earth plane.

We found our way to Access 24 after a psychology appt where we were seen immediately by a psychiatrist and brought back to ER under a Form1. He was now 102lbs and so extremely weak. Our amazing ER doctor had now seen him twice and knew what we were dealing with. She did a lumbar puncture, admitted us and started treatment immediately as results would take about a week to come back.

That was 46 days ago.

He’s since had every test under the sun and some numerous times. He’s undergone 5 days of high dose steroids followed by 5 days of IVig, 2 rounds of Rituximab and more weekly steroids. He’s on multiple seizure and anti-psychotic medications, benzos and round the clock Ativan. His neurologist team is comprised of over 2 dozen of them with a few specializing in neuroinflammation. And countless nurses who have all been so amazing even through the major challenges we have endured.

He’s coming around. Eating and has regained 25lbs.

He knows his name most days and can answer simple questions. Although it almost always comes out as gibberish. He still can’t form words well or grasp them from his mind (apraxia) and still suffers greatly from echolalia, a symptom of Catatonia. We still have to take a wheelchair everywhere we go as his brain is so fatigued his legs will just give out. He has so much to relearn and remember. And there’s a million stories in-between this simple explanation of his condition.

It’s so vast. And so unique. And terrifying can’t even begin to describe what we’ve been through.

He has had either Trev or me by his bedside every single minute. Trev couldn’t work for almost 6wks. We are beyond exhausted as sleep is a rarity for any of us. There is no escape. Only time.

We don’t have a release date. And when we do, it will be to move him to the Glenrose for the Brain Injury Rehabilitation Program (BIRP).

This is treatable but it can take years to recover and he may never get back to 100%.