BENEFITING

In January of 2017 Phoenix had his first seizure in his sleep. It is every parents worst nightmare to have to see your baby having a seizure. I held him crying as he was shaking, eyes fluttering, blue faced, gasping for air but his brain wouldn’t send the signal to breath with saliva foaming out of his mouth. This lasted 4 minutes and was the worst 4 minutes I’ve ever had to experience. I didn’t know what to do. I literally couldn’t physically help my baby to bring him out of it. I immediately called 911 while holding him in my arms screaming to God for help. I’ve never been in a position of so much weakness and no control when it comes to my child. The ambulance arrived and they were able to stop the convulsions but Phoenix wouldn’t wake up. He stayed in a postictal state for almost 20 minutes. Once the ER Physician finished seeing him, he diagnosed it as a febrile seizure and said it was from the temperature of his body raising so quickly. Yet Phoenix only had a 99 degree fever. February 2017 it happened again, except this time he wasn’t sleeping. He was so happy, go lucky, laughing and playing and all of a sudden, out of no where he started having seizure. I called the ambulance. I was more prepared this go round, watching the clock trying to time the seizure and lay him on his side. But this time the seizures weren’t stopping. When he would finally stop convulsing, he would have another one. After getting to the hospital, the ER Physician, once again, called it a febrile seizure. Although he had no fever at all. They sent us home and not even 12 hours later Phoenix was having seizures again. Back to the hospital we went. This time a different ER Physician was there and agreed him having seizures without fever wasn’t normal. And gasping for air during a seizure wasn’t a normal seizure as well. We were finally referred to a Neurologist. Within months, Phoenix was having multiple but different kinds of seizures. Some were obvious resembling the first few he had and some he would just fall over and lay there with his eyes open, unresponsive. His Neurologist did multiple studies and has so far diagnosed him with Tonic-Clonic seizures and has put him on Depakote to ease the seizures. Although it helps and has lowered the numbers of seizures, Phoenix still has experienced some with the medication. His Neurologist then referred us to a Sleep Specialist due to him not breathing during some seizures. After a sleep study Phoenix was diagnosed with Severe Sleep Apnea and stops breathing from a minute to several minutes with more than 15 of these events an hour. Due to this, his body is not staying in a deep sleep causing him to also have Severe Bruxism (teeth grinding) and Parasomnia. During his Parasomnia events he will scream out, have sudden movements, night terrors, and his brain starts dreaming before it even reaches the “dream” stage (REM sleep). He also has seizures from his body being so exhausted from the lack of sleep. Phoenix had tubes put in his ears to hopefully prevent sickness which triggers his seizures as well. He has recently had surgery to remove his tonsils and adenoids to open his air passageway to help him breath. Since Phoenix is so young it is hard to decipher the cause of his seizures. His Neurologist strives to figure the cause and to continue to do tests until we figure out all possible triggers that start a seizure. Amongst it all, Phoenix is the most loving, funny, smart and kind 2 year old boy by far. Every day I look at him and can’t believe through all the struggle, tiredness and weakness he is able to fight through and enjoy his life as if he could conquer the world…. or if he’s the one telling it, “Like Superman, Mama”