Finn has Tuberous Sclerosis (TSC) and, despite having significant tuber burden and several seizures a day from the time he was ten months old, he developed normally - if not advanced - until he was almost four years old. Finn was a truly exceptional child. He was crawling at five months, walking by ten months, knew hundreds of words and had functional language by twelve months, he knew colors, could count objects, and recognize every letter in the alphabet and the sound they made by eighteen months. Before his regression he was a super sweet, smart, friendly, fully conversational child. He had an amazing memory for music and we were pretty sure that he had perfect pitch because he could sing back any song he heard perfectly. 

He is now completely non-verbal, has little interest in toys, has limited functional skills, and is clinically assessed as having the mental age equivalent of a six-month-old.

During the time that he was developing his personality and building all of his amazing skills he was having three to twelve seizures a day - mostly short focal seizures, some would last longer and turn into tonic clonic seizures. Between the ages of two to three and a half Finn tried and failed several seizure medications. 

After failing all of the basic seizure medications, he was given Everolimus, an mTOR inhibitor used for chemotherapy. Within ten days of starting Everolimus, Finn?s seizures were gone. It seemed like life was about to be normal for Finn and we were so excited for him. A few months later everything went downhill. Finn went through a month of complete rage, self-harm, and completely frantic behavior. He was intentionally running into walls - fast enough to make his nose bleed if we couldn?t catch him in time, he split his lip running into the kitchen counter, he would try to slam his head on the floor screaming ?want to crash my head? over and over. He stopped engaging, stopped talking, and started obsessively grinding his teeth all day long. 

After his month of rage and self-harm he calmed down to an almost alarming level. He would spend days completely silent trying to hide himself under the rug in his bedroom or in the living room. He lost interest in movies, toys, music, and people. Within the span of three months (April 2023 - July 2023) we had a completely different child. 

His silent and motionless phase lasted a few months but since then he has spent his days running and jumping and stimming and yelling. His body is constantly in motion and the only way he gets a break from movement is if I put him in a stroller or car seat. He takes clonidine and melatonin at night and it can take him hours of bouncing around his safety bed to fall asleep. He pokes his mouth all day long and sometimes creates sores on his gums, he has chewed holes through several fingernails. He drools and spits all over himself all day long and needs three or more shirt changes daily. He gets annoyed with his wet shirt but locks his arms to his sides when you try to take his shirt off. His body often seems rigid and tense. 

He has ABA services during the day and has made very little, if any, progress. They have been working with him to touch pause / play on the screen of his iPad for the past year with no luck. They have also tried to teach him to use PECS as a form of communication but that hasn?t stuck either. 

Our epileptologist at OHSU said ?this is just what autism and TSC look like? but I cannot accept that answer. We have taken him to TSC specialists in Seattle and Tennessee with no better outcome. He has everyone completely stumped. 

Finn?s seizure origin is very deep and it takes at least three minutes for a seizure to reach the surface of his brain and show up on EEG. We spent a week in the hospital and watched him have over forty seizures in that time and only one of them showed up. I suspect he is having constant subclinical seizure activity that is undetectable. I also think he may be suffering from chronic hyperkinetic catatonia - possibly linked to subclinical seizures. 

I would love to make contact with any specialist anywhere in the country that might be able to help him. It is extremely hard for us to travel because of Finn?s hyperactivity and lack of safety awareness so I would like to make sure that the next place we go will be the right fit. I need a team that will not box Finn into the stereotype of his diagnosis. I need a team that will see the whole picture and approach Finn?s case with curiosity and creativity. I need someone who can help us find the child that we lost three years ago. 

Thank you for taking the time to read about Finn, please share his story with anyone you think might be able to help!