OUR STORIES

Tate had his first seizure at 9 months old in January 2010. He just had a tonic-clonic out of the blue and we were sent by ambulance to the children’s hospital. He was discharged after a week with seizure control on keppra. He also qualified for early intervention because he was behind with his gross motor skills. Literally the same week he started medicine, he started crawling. The doctor said he was probably having little seizures all the time and his brain just couldn’t function enough to motor plan.

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He was on the same dose of keppra for 18 months and was seizure free the entire time. He was a very sweet, calm, and loving baby until the seizures (or medicine) came into play and then we had behavior issues start to arise. By the time he was 16 months old, he was put into the “2 year old” room at day care because he was hurting the babies. He was aggressive and a biter.

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So then it became a medicine game. The keppra failed and then another medicine would work for a few months and then fail and so on and so forth. During this time we switched neurologists because the one he had (who was also the head of the neurology dept) let him have 22 tonic-clonics in 24 hrs. We took him to another hospital where he was admitted for four days during this episode.  The more seizures he had, the worse his behaviors became. Lots of aggression and deficits socially and emotionally. This is when we also realized the Benzo’s make his behavior INCREDIBLY worse.

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(He almost destroyed the neurologist’s exam room.) Which stinks because he has the best seizure control on them. This behavior got him kicked out of his first day care. So then we decided to go to the #2 nationally rated in neurology (at the time) children’s hospital that was a little further drive for answers. At this time he was having clusters every 4-6 weeks for a 2-5 days at a time until a rescue Benzo is given to stop them. They at last found a medicine that controls them (zonegran). He was on topamax in the past with seizure control but it made him not sweat at all so they considered it an allergy but since zonegran is its sister medicine, they decided to try it.

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Since then he’s been diagnosed with sensory processing disorder, ADHD, OCD, anxiety disorder-
nos, and probable ODD. These behaviors got him kicked out of his second daycare. The only seizures he’s ever presented with are tonic-clonic with apnea and decreased heart rate. He’s been in status once resulting in an icu stay and intubation. He’s also has fine and gross motor deficits and constipation issues since he’s been a baby. His sleeping is finally manageable. He still gets up once or twice a night but goes right back to sleep. He used to get up and be up for hours in the middle of the night. That was tough. I’m glad he’s hopefully over that. He currently receives no therapies (OT or PT) for any of his issues as there are none available in our town. He used to go to an OT in the neighboring town 35 miles away but she doesn’t want to see him because of his behavior. She said she can’t work with him.

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He has never had any cognitive deficits and is very intelligent.  He had his classmates names memorized at 2 years old and could identify them when I printed their names as well as other small words. He knew his colors and shapes by his second birthday and could identify letters and numbers by 3 or 3 and a half. He tested out of kindergarten reading this past school year his teacher suggested and enrichment program (which there are none here). Lately his interests are maps and roads and he remembers street and highway names and can tell you how to get anywhere he’s been.  He spends his spare time looking up places on google maps.

He does see a psychiatrist every four months or so to manage his behaviors and the doctor is actually the one that suggested he be enrolled in the exome sequencing program to look for different disorders. I remember the geneticist telling me “if he were a girl, I would know exactly what he had.” So four neurologists (I think), nine medicines, and three hospitals later, here we are. Everything I’ve read on this disorder matches with him pretty much.