In June of 2006, Emmett was a normally developing 2 ½ year old little boy with speech delay. He was so well coordinated and had a smile that could brighten up any room. We had just come home from a weeklong vacation and I was getting my two boys ready for bed, we were reading a story, having a great time – and the next thing I knew Emmett was on his side convulsing, salivating, and turning blue. Emmett had his first tonic-clonic (grand mal) the night of June 26, 2006, I remember it as though it was yesterday. My husband was at work, I couldn’t dial 911 fast enough. I remember yelling to the dispatcher, “He’s turning blue!” It seemed like a lifetime before he came to. The ambulance swept him off to the ER for a multitude of tests.
That was the first of many visits to the hospital and the beginning of thousands of seizures to follow. Emmett was diagnosed with Doose Syndrome or Myoclonic Astatic Epilepsy. A rare, intractable and hard-to-control form of epilepsy. Emmett suffers from many seizure types, myoclonic jerks, tonic-clonics, atonics (vicious drops to the floor) and absence seizures (blank stares). As a result Emmett wears a helmet to protect himself from injury.
Emmett has tried eight different meds and some worked for a short period of time. Some drugs either made the seizures worse and others took away Emmett’s quality of life. After failing on the seventh drug, we started the Ketogenic Diet on November 27th, 2006. The diet is reserved for children with difficult to control seizures. It is a low carbohydrate, high fat diet. Foods must be prepared carefully and weighed accurately for each meal. Emmett was required at each meal to drink a shake that was made up of heavy whipping cream and coconut oil. Children on the diet are not allowed to snack in between, drinks must be sugar free, calorie free, and prepared meals must be consumed down to the last drop. If something fell on the floor it was recommended it be washed off and eaten; and for best results, meals should be served at the same time every day and finished within a half hour. It could be very trying at times, to say the least, on Emmett and our family. After 8 months of much trial and error, we didn’t see much improvement developmentally and were without seizure control.
Early July we met with a new doctor for a second opinion. When we arrived there the doctor suspected Emmett was in a non-convulsive status state (non-stop seizure). The doctor admitted him and ran extensive tests, including blood work, MRI, and spinal tap. Emmett was closely monitored with a video EEG for almost a week while in the hospital. We stopped the diet, eliminated one drug and added another . . . 11 days later Emmett was seizure free.
Although Emmett’s case is rare, it certainly is not unheard of. There are over a million people in America that have uncontrolled seizures. I’ve learned that epilepsy is a very delicate balance of life and meds. Unfortunately at times it seems like nothing but trial and error. I truly hope that while raising public awareness doctors will be challenged. Challenged to find the answers, and challenged to make a difference in epilepsy.
Prior to Emmett getting sick we used to be a family that was non-stop, on the go 24/7; the kids were in play groups, gymnastics, soccer, etc. When Emmett got sick our world was rocked and everything came to a screeching halt. As a result we now look at things differently; we prioritize differently and certainly appreciate the little things in life.
Today, Emmett remains on 2 anti-convulsive drugs. The latest drug has the possible side effect of aplastic anemia, therefore, he gets weekly blood draws and his levels are tested. He is now 5 months seizure free and is making great strides. His speech is improving a little bit each day and he is back to running and jumping. As we’ve learned, nothing in life is guaranteed. We take one day at a time and are thankful we have our Emmett back. We pray it is forever this time.
Update: On July 21st, Emmett’s half birthday, Emmett celebrated one year seizure free!! He continues to take Felbatol, with routine blood work and recently started a very slow wean off Klonopin. He has made amazing strides and we are thrilled, to say the least, to have our Emmett back! We are extremely thankful for every day!
Awareness Video Song by: Daniel Powter, Bad Day, (©Warner Bros. Records, Inc. 2005)