The Struggle of Childhood Epilepsy (TLE) & The Return of The Review Ballerina!
I have been a blogger and reviewer now for, I want to say about four years? You all have watched me move cities, watched my daughter start school, and more. But nothing could've prepared me for the challenge that we have faced over the course of the last few years and now that it seems to be getting under control, it's time to tell everyone what's been going on!
First, to all companies that have worked and partnered with The Review Ballerina, thank you for your patience and understanding as we helped our daughter. We look forward to continuing to work with you in the future.
In May of 2018, my daughter went on her first field trip ever. She went on her first school bus and was going to a local zoo with her Kindergarten class. On the way home, she passed out on the bus and her teacher sent me this picture thinking it was cute that she was so exhausted from the trip. It wasn't until I picked her up did we find out...nothing about this was cute. She was in heat stroke. Her body temperature when I took it was at 105 and had been there for at least 4 hours. No one recognized the signs so she was crying, and couldn't walk, she wasn't drinking much, and her skin was on fire and yet no sweat. By the time I got her home she was in and out of consciousness and I had to give her tylenol, gatorade, and put her in a cool bath. None of that was working, so I took her to the emergency room which ended in a transfer to Children's in Dallas for an overnight stay and an MRI for brain damage. At this time, it seems this may be what started our later issues.
Over the course of 2018 and 2019, our daughter was a very different little girl. She began chewing the skin on her fingers deep, they would be purple and nearing a risk of infection. She would be screaming if she couldn't make a decision and she'd suddenly be over hyper and unable to control her voice level. Words like "ADHD", "Autism", "Anxiety" were being tossed around and finally she was put on medication with the diagnosis of "ADHD with OCD and anxiety". She was seeing counselors, psychiatrists, neurologists, and yet she didn't really seem to be getting better. As a mother it was killing me that I was seeing a different child than I had seen before. Our daughter has always been known as one of those extremely sweet, calm, well-mannered children and so quickly after the heat stroke she was behaving so crazy that we didn't know how to help her. We were even told by her doctor to get a dog for anxiety so we did. But then, after spending over a year dealing with this I decided to take her back to her neurologist...and wow...
In November of 2019, her neurologist had her do an in-office EEG for an hour. This showed seizure brainwaves which startled me into tears. We hadn't even thought about this because she'd never exhibited physical seizures. We then were in the hospital overnight, where they confirmed only 4-5 hours in that yes, she had epilepsy. But not a physical form of it, no my daughter has Temporal Lobe Epilepsy. This form is non-convulsive that causes her to lose track of portions of the day, space out randomly in her classes (which could be seen in karate), have breakdowns randomly because she wouldn't be able to control her emotions, it was a battle that was uphill and we hadn't even started the climb! On top of that, she was also exhibiting rage which confused the hell out of just about everyone who would hear it. She'd scream, punch, kick, smack, throw herself around during her episodes and we'd have to hold tight keeping her from hitting her head on walls, furniture, it was frightening! Waking her up in the mornings was a challenge, would she wake up okay? Would she wake up in a seizure? In a mood? What do we do?
Even after beginning medications, our daughter wasn't getting much better. It was now a climb of what medications, when, dosages, and all the side effects that came with it. Her very first seizure medication had her vomiting and sleeping 18 hours a day. Her second really did nothing, it wasn't until her third did suddenly we see a transformation in our sweet girl. I am happy to report that as of February of 2020, our daughter is seizure free with the help of proper medication!! We also have found out that her rage is not seizure related but another issue entirely and we are also keeping that under control now! Which is good because this past week, she clocked me twice in the face while having an episode and people assumed when seeing my bruised and swollen cheek it was my husband! That karate is giving her some good strength and at least I know she can AIM RIGHT. lol. At the highest, our daughter was on 11 1/2 pills a day (some were from the ADHD misdiagnosis that we couldn't just stop her from taking she had to be weaned) but now I can safely report, she is being weaned off most of her medications!! Hooray for better liver and kidney health!!
My daughter is a karate kid, a Girl Scout, a hard worker in school, a fast reader, and most of all is my beautiful perfect little angel. The theory is, her heat stroke caused brain damage, which is what has caused her TLE and her Rage. Unfortunately, we can't medically prove it according to the neurologist so we have to just help her and guide her. This is the climb of TLE, this is the climb of a child with Epilepsy that is non-convulsive. This is the struggle daily we have where we have to watch her and see if she's going to have a good day or bad day. We are lucky she does not have convulsive seizures and that it could be much worse for her but it's hard when you can't see what's happening on the inside. She could just be having a typical 8 year old little girl tantrum, or she could be having a seizure and can't control what she's doing. How do you parent and punish a child for being bad, when you find out they weren't being bad they were seizing? If your child strikes you, you're supposed to punish the child so they don't do it again. But if they strike you during a seizure or rage episode that is medically out of their control, how do you get the point across it was wrong without guilt or making the child feel worse when they come back around and see what they've done? This is what we've been dealing with, and this is why the blog suffered.
My daughter has Epilepsy, and yet I will always be there for her. She also has the support of family, friends, her karate family, and her Girl Scout troop and that has made this long path a little easier knowing if I need to cry, vent, or just take a deep breath someone is there for us. As a blogger, you have to sit back and decide if your hobby is able to be managed while your family life is being tended to and reality is I chose my family before blogging. But now, The Review Ballerina has returned and I can now be a wonderful mother to my beautiful girl along with being a great blogger for all of you!! So, let's have an incredible 2020!!!
Elizabeth is a wife to her wonderful husband, a work at home mother to her beautiful little girl and a blogger for some time now. When she isn't spending time with her "Livvybug", or laughing with her husband, she is looking for new review opportunities and writing or singing along to classic rock and pop music!