UPDATE: - May 21, 2014
On March 14, 2014, Elijah took his last dose of any meds. He has now been seizure free for over 2 1/2 years! He has also been med free for more than 2 months and has had 5 straight all-clear EEGs. Elijah will enroll in Kindergarten in September.
Ours is a story of an explosive onset and a stop to his seizures that were nearly as abrupt as their start. Our journey with Doose Syndrome began on June 14, 2011 when our then 22 month-old son Elijah had his first seizure. We met with a doctor at Children's Hospital - Boston two days later and took hope in the fact that he 'may never have another seizure.' On June 23 he had 3 more and we spent our first night at Children's. We were released the following day, on Keppra that we hoped would control the seizures. On the June 30th, he would begin a stretch of 4 days in which he had 44 tonic clonic seizures. We left the hospital on July 9th having been seizure free since early in the morning on July 4th. The Dilantin they'd given Elijah had initially prevented him from being able to sit up on his own, but each day he became steadier and steadier to the point that he was walking with just his hands being held.
He began having myoclonic, myoclonic-astatic and an occasional absence seizure on July 13th and we were back in the hospital for an additional 10 days. On July 16th, Chrissy and I first started researching types of epilepsy that were associated with myoclonic seizures and were heartbroken at what we found. We tried our 5th combination of medicines - Depakot, Klonipin and Zerontin. By the time we left on the 22nd, Elijah was mostly just having one tonic-clonic seizure in the morning and the other types were intermittent - showing up strongly some days and being virtually non-existent on others. We bought a helmet and a harness to prevent him from hurting himself. August came and went and we saw no real change - Eli had good days and bad days. We praised the Lord for the good days, and thanked him that not every day was a bad day. His morning was very indicative of the type of day he would have - if he only had one seizure in the morning it would be a good day - if he had more than one, it would be a long day.
Starting in the middle of the month we started seeing 3-4 good days in a row followed by 3-4 bad days. But the bad days were lessening - down from 6 or 11 tonic-clonic seizures in a day down to 4-5 and then 2-3. I had created a graph displaying his TC seizures and the downward trend was undeniable. We just wondered if it would reach a low plateau or bottom out. On September 19th we finally got our start date for the Ketogenic Diet which we'd been trying to get since late July. That day was the 4th day in a 5 day cycle in which Elijah would have 8 seizures. On September 21st he did not have a seizure, nor did he any of the next 16 days. This 17 day stretch convinced Chrissy and I and the team at Children's that we should postpone the diet for the time being. Over the next 17 days, Elijah would have 9 seizures, but these were also brought on by a cold and only one day saw him have multiple seizures. More than that however, we started to see our happy-go-lucky boy return. He was redeveloping the gross motor and fine motor skills he'd lost during the terrible summer. He had a 16-day stretch from October 25-November 9th during which he didn't have a single seizure. He got another cold and had 3 seizures from November 10-14. November 14, 2011 was the last time he has had a seizure. An EEG on November 18th revealed he also wasn't having any sub-clinical seizures.
On November 14, 2012 we celebrated with our parents that Elijah has now going an entire year without a seizure. He was even hospitalized with pneumonia and a temperature of 103.9 without having a seizure! We've completely weaned him off of Klonipin with his last dose being March 1, 2011. As the days have continued to pile up and he's overcome illnesses and ailments, we can't help but hope and pray we may have actually seen his last seizure. On his 66th day seizure-free Elijah met his new baby sister Sophie who was born on January 19th. On February 4th, he had his first day of skiing (seen above at Stowe, VT) and he LOVED it.
Ours is most definitely a story of joy and we pray it provides hope for those still battling this disease day-by-day. Elijah had his seizures over a 152 day span and has now gone 21 months without a seizure. In April 2013, we started reducing 1 pill of Depakote a day and he is now on just 3 a day (with plans to completely be weaned off on October 28, 2013) - down from 9 at his peak in 2011. He has also now had 4 straight 'all-clear' EEGs. We also fully have our little boy back. He still faces some developmental delays particularly with his speech, but we are confident that he will eventually catch-up. We are truly blessed by his recovery and the stretch he is currently on and pray for his continued health.