Today is Purple Day. A young girl started the event a few years back to raise epilepsy awareness and it has caught on world wide. The concept is simple, wear purple on March 26th to promote epilepsy awareness. www.purpleday.org Do you have your purple on today?
The last few weeks have been pretty rough for Drake. Two weeks ago he had a seizure at school that required transport to the ER. Thankfully he was fine by the time I got there. This past Monday, we noticed that he was coming down with a cold. Monday afternoon, seizure. Tuesday afternoon seizure. Off to the ped who was pretty sure it was just "something viral," but she went ahead and prescribed antibiotic to be safe. Tuesday night, before I'd had a chance to pick up the antibiotic, seizure. This time the seizures didn't stop. He'd seize for a couple minutes, have a couple minutes of recovery and start seizing again. This went on for about 15-20 minutes, so we gave Diastat. Still seizing 10 minutes later, so another dose of Diastat. Still seizing 10 minutes later, so we called 911. When they arrived he was still actively seizing. He received two doses of Ativan in the ambulance and earned himself a trip to the hospital with sirens blaring. In the ER he started seizing again; two more doses of Ativan. Nearly two hours after it all started, he finally was resting peacefully. Since he had so many rescue meds, the admitted him to the ICU. He kept spiking a fever, so several tests were run to try to figure out what the culprit was. After a day in the ICU, they decided he was stable enough to move to a regular room. He still couldn't bear weight and looked incredibly drugged up...and continued to spike fevers and have some bizarre seizure activity (and wasn't sleeping more than two hours at a stretch). An EEG was started. Finally Thursday night, they got the results from the Strep test...we had a cause and antibiotics were started. Friday he was looking better, the EEG was taken off, he was bearing weight and even walked the halls a bit, using Sushi for balance. Unfortunately he got a little cocky and let go of Sushi and crashed head first into a door jam, splitting his head open. Thankfully the blood was far worse than the actual cut, a little Dermabond from the Trauma team and crisis averted. He continued to have small seizures however, seemed to be increasing. So when his neurologist came in Friday evening, it was decided to add another med and to be safe, we'd keep him in the hospital at least one more day to see how the introduction of this new med goes. He also recommends that we have Drake fitted for a helmet in light of the earlier fall and his continued weekness and poor balance/coordination. So that's where we're at right now. Hopefully going home tomorrow, Purple Day.
Oh, and I know you're wondering. Yes, Sushi has been alerting us to the seizures! She's even starting to bark if she can't get to Drake (Monday she was in her kennel up in Drake's bedroom and we were down in the kitchen when Sushi started barking like crazy. 15 minutes later, Drake was on the floor seizing. Sushi didn't stop barking untiPretty crazy that a minor case of Strep throat has resulted in a five day hospital stay. Such is the life of Dravet Syndrome!
The last few weeks have been pretty rough for Drake. Two weeks ago he had a seizure at school that required transport to the ER. Thankfully he was fine by the time I got there. This past Monday, we noticed that he was coming down with a cold. Monday afternoon, seizure. Tuesday afternoon seizure. Off to the ped who was pretty sure it was just "something viral," but she went ahead and prescribed antibiotic to be safe. Tuesday night, before I'd had a chance to pick up the antibiotic, seizure. This time the seizures didn't stop. He'd seize for a couple minutes, have a couple minutes of recovery and start seizing again. This went on for about 15-20 minutes, so we gave Diastat. Still seizing 10 minutes later, so another dose of Diastat. Still seizing 10 minutes later, so we called 911. When they arrived he was still actively seizing. He received two doses of Ativan in the ambulance and earned himself a trip to the hospital with sirens blaring. In the ER he started seizing again; two more doses of Ativan. Nearly two hours after it all started, he finally was resting peacefully. Since he had so many rescue meds, the admitted him to the ICU. He kept spiking a fever, so several tests were run to try to figure out what the culprit was. After a day in the ICU, they decided he was stable enough to move to a regular room. He still couldn't bear weight and looked incredibly drugged up...and continued to spike fevers and have some bizarre seizure activity (and wasn't sleeping more than two hours at a stretch). An EEG was started. Finally Thursday night, they got the results from the Strep test...we had a cause and antibiotics were started. Friday he was looking better, the EEG was taken off, he was bearing weight and even walked the halls a bit, using Sushi for balance. Unfortunately he got a little cocky and let go of Sushi and crashed head first into a door jam, splitting his head open. Thankfully the blood was far worse than the actual cut, a little Dermabond from the Trauma team and crisis averted. He continued to have small seizures however, seemed to be increasing. So when his neurologist came in Friday evening, it was decided to add another med and to be safe, we'd keep him in the hospital at least one more day to see how the introduction of this new med goes. He also recommends that we have Drake fitted for a helmet in light of the earlier fall and his continued weekness and poor balance/coordination. So that's where we're at right now. Hopefully going home tomorrow, Purple Day.
Oh, and I know you're wondering. Yes, Sushi has been alerting us to the seizures! She's even starting to bark if she can't get to Drake (Monday she was in her kennel up in Drake's bedroom and we were down in the kitchen when Sushi started barking like crazy. 15 minutes later, Drake was on the floor seizing. Sushi didn't stop barking untiPretty crazy that a minor case of Strep throat has resulted in a five day hospital stay. Such is the life of Dravet Syndrome!