The Dean Boys Epilepsy/Mito/Autism Story

All three of my boys have been diagnosed with undefined Mitochondrial Disease. Casey and Evan have Autistic Spectrum Disorders. Casey the oldest and Max the youngest have recently been diagnosed by their Neurologist with complex partial epilepsy. Casey's EEG's look different each time but always show irregular brain activity. Both take Tryleptal which seems to help them. Casey had a sever allergic reaction to Lymictal.

My boys have always been on just one medication for their epilepsy. They have a great Neurologist named Dr. Barr. He has told us about the Ketogenic Diet which in theory we haven't started yet but my son Casey tends to crave high fat/protein anyway. He loves milk and it is as though he self medicates with the food choices he makes. My goal this year is to get them officially on the Ketogenic Diet.

Casey's Mito is the most sever so he is the first child we had tested. They did a muscle biopsy which found abnormalities associated with Mito. At the same time we were suppose to have a hospital stay to do a 3 day study/EEG. But the Muscle biopsy put that on hold. Little did I know that epilepsy is very common in children with Mito. Casey if gifted and in the 3rd grade started attending a public school gifted program. He started complaining to his teacher that in the bathroom he would hear Latin voices coming from the ceiling and would then pass out. The teacher thought Casey's story was just a reason to get out of school. "He described a seizure so well, how could he know he is having one, he is so smart, he must have read about them and wants to get out of school." she said to me. I was a bit concerned at this point. Then a few days later she told me Casey went to the bathroom and was in there for 20 Min's. She said he responded to her when she knocked on the door, yet when he came out of the bathroom there were imprints of the tile floor on his face. At this point I realized Casey was in trouble. I contacted his Neurologist who had a 30 min sleep deprived EEG. Casey couldn't fall asleep but it didn't matter. The Doctor said his brain activity was all over the place, he was definitely having seizures.

The Dean Boys: Evan 9, Max 5 & Casey 10 in N.H for Casey's Make-A-Wish Trip to see SNOW!

We had suspected seizures years ago. One day at Casey's private school I had went into the office as Casey stood with his class at the Flag Pole saying their daily prayers. When I came out everyone was gone but Casey was standing by himself very confused. I asked him what he was doing and where his class was. He said, mommy where did everyone go? He was completely disorientated. I had an EEG done by a different doctor and everything came back fine. Then the medical study for Mitochondrial disease started. It wasn't until a few years later we realized Casey was having seizures and probably had been for years. He was diagnosed with ADHD at an early age. Then we had IQ testing done because teachers were concerned with his social and emotional behavior. His IQ is around 160. Then we realized something physically was wrong, he was always tired and had poor motor skills. An occupational therapist determined he had sensory issues and was Hypotonia/Hypoflexive. At the same time Casey's shrink informed us he thought Casey needed to have a muscle biopsy because he thought Casey might have a Mito problem. From that point on our long family journey began.

First with Casey, and then once I found a good Neurologist I realized my other boys had some issues too that needed to be addressed. He did EEG's on all of them, MRI, blood testing for metals ect and finally gave diagnoses. Maxwell and Evan also had Mito. Casey and Evan were having social/emotional issues in school because they had Aspergers. Max and Casey both tested positive for seizures.

It has been a long ride. First we were in denial about Casey's Autism. We would say, oh, he is just gifted. Gifted kids are weird. :) but we were just over-looking what everyone else could see. Then came acceptance, that yes, our kids had health problems that would affect them for the rest of their lives. We did genetic testing which all came back normal. They haven't been able to define the type of Mito the boys have (which is very common because there are thousands of disorders and new ones being discovered everyday). Mitochondrial Disease is a progressive disease. No one Mito case is the same. There is still very little the medical community knows about Mitochondrial Disease. Everyday we look for more hope and will never know what the future holds for our boys. We take life day by day.

I have become a hardcore advocate for my children. My goal is to help them succeed to the best of their abilities. I also want to help other parents on their journey. Mito, Autism and Epilepsy is part of our life. We have learned to embrace it. My kids seem like any other child minus the perfect behavior or the fact my 10 year old still can't ride a bike. It's OK, he is a genius on the computer. And a brilliant writer.

This mom is also a life long fine artist. I stay at home and take care of my boys. Once I got past the depression of the news of my boys situation I realized I could incorporate my art with their cause. So I have started branding my artwork for Mitochondrial and Autism products. I may branch out even more. I sell my work to raise money to supplement what insurance doesn't cover for their treatments and medications.

So that is our story. Simple and sweet. A family on a long journey together.