Project Description

Aiden’s Story

Aiden was born in November 2005, a happy and healthy baby who joined two older brothers. His first 11 months of life were picture-perfect: He smiled, crawled, and giggled on time, showing no signs of anything being wrong. But at 11 months, he suffered his first tonic-clonic seizure that lasted somewhere between an hour and an hour and forty minutes. All tests during that 3-day hospital stay came back normal including CT, MRI, EEG, electrolytes, spinal tap, etc.

Although the neurologist to whom we were referred assured us there was no danger of this happening in his sleep, the next tonic clonic came at 2:00am three short weeks later. It lasted 30 minutes despite multiple doses of Diastat. He had a third tonic clonic (20 minutes long) two weeks later, also in the middle of the night, and was started on Keppra. He continued to average one seizure per month, though they clustered: three in a matter of two weeks, then 2-3 months seizure free. Between the ages of 1 and 2 he continued to develop normally with the exception of his speech. By his 2nd birthday, he had fewer than 10 words and was exhibiting odd behaviors, which we thought was due to Keppra. His neurologist added Lamictal (lamotrigine) when Aiden was 28 months old, and we completely lost control. His seizure became more frequent and new seizure types appeared. He became so photosensitive and excitement/movement sensitive that he could not go outside on a cloudy day or to the grocery store (with fluorescent lights) without having many small seizures that would build to a tonic-clonic.

At age 2 ½, a metabolic specialist at the Mayo Clinic in Rochester, MN discovered his SCN1A mutation. The first neurologist he saw, who prescribed Lamictal back at age 2 and told us that sleep seizures were extremely rare, maintained that he did not have Dravet syndrome despite the positive SCN1A test AND every clinical diagnostic feature because Aiden was able to put his cars into a basket at an appointment when asked. “You don’t see that in Dravet,” was his justification. Three subsequent neurologists confirmed the diagnosis we already suspected.

Aiden’s seizures were most frequent between six and eight years old. He fell into a pattern of weekly or semi-weekly clusters, when he would suffer from 60-90 full blown tonic-clonic seizures over a 48-hour period. He ate very little during his clusters, could not speak, and seized day and night. He would then take a few days to recover, and start the pattern again despite any attempts we or the hospital made to stop the clusters. Thankfully, we eventually found the most suitable medication regimen for him at the time and he does not have these terrible clusters anymore.

Today, at age 11, Aiden is still the happy, easy-going toddler he was for the first 11 months of his life. He functions at about a 3-4 year old level and has 20-40 short tonic-clonic seizures per month. He is on the ketogenic diet, and has a g-tube and VNS, but runs, swims, plays, rides his bike (with training wheels), and wrestles with his brothers. He is stronger than any of the rest of us and deals with his limitations exceptionally well. He is a happy, sweet, affectionate little boy whose inner strength is a trait we all respect!