A month ago I noticed my son was acting differently.
At first I thought he had lock jaw. He started to gag and then his jaw locked up, making his lips into an "O" shape. He was just playing a moment ago, and now he is just sitting there, still as can be. I try to tickle him, shut his mouth, get him to talk, anything. As he's sitting there, he's just staring at me. His eyebrows not making any expression at all... Just staring. I feel his heart, and it's beating so fast. His eyes start to flood and one single tear drops down his cheek... Still, no expression on his face. He started to drool a little and struggles to suck it back up. This episode lasted for well over a minute... A similar episode happened a little over 36 hours prior, however, it lasted less than a minute.
After over a minute he jumped into my arms and just looked at me. I had no idea what just happened, but he seemed to be acting normal. He resumed playing and jumping on the bed. About 10 minutes later he went back to bed [for at this time it was about 11:30 pm]. On my way to bed I checked on him [like I always do] and noticed he was awake playing. So I decided to bring him into my bed and watch cartoons for a little while longer before putting him back down. Thank goodness I did, because that decision alone helped me realize something was truly wrong.
I called the doctor and explained what happened and how I thought it was probably just lock jaw. Explaining the behavior to the "T". The doctor decided to send in an immediate referral to the neurologist, explaining to me that it sounded like he was having a "silent" seizure. That word alone freaked me out. How could he have a seizure? He was just sitting there, non convulsive, and then resumed playing! I had never experienced anything like it... After waiting 3 weeks for our appointment at the Balboa Naval Hospital it was finally time for some answers...
The Pediatric Neurologist was amazing. He answered every and any questions I had. After a little over an hour he diagnosed my son with Epilepsy, saying he has complex-partial seizures. This is why he is non-convulsive and is completely still when he has his episodes. I never felt so alone, confused and scared. I educated myself on Epilepsy... I knew what it was, how to treat it, that my son can live a normal life... I wasn't afraid of "Epilepsy" itself... Because I KNOW everything will be okay. I was more afraid of the unknown... The scheduled MRI and EEG.. Having my son sedated... The medicine and whether or not it will work... It's all the in betweens until we get into our groove. All the while my husband is deployed... I never needed him by my side more than I did at that point.
Luckily we can wait to schedule his MRI and EEG until Trevor comes home. There is no way I can do this by myself... [Or so I'm thinking..] Support has been the hardest to come by for me... My family doesn't understand nor can they accept it. The sooner they do, the sooner than can be able to stand by me instead of doubt me. The decisions I've had to make thus far have been the TOUGHEST decisions of my life, and I'm doing it alone... With no help, only with question. Thank goodness for a few good friends to help keep me sane. I'm ready for my husband to come home...
Last night we started the medicine. Keppra. The doctor said it will make him irritable until his body gets used to it. If it doesn't make him irritable, then that means that the medicine is not working. Today he woke up completely happy, loving and active... Not sure if this is a good sign, but he's only had one dose so far. So we will see what happens tomorrow. Praying that this medicine will work and can control his seizures. He's such a brave little man... <3
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