I have been trying to figure out how I want to introduce Sierra. She is 15 and is very private when it comes to her medical problems. I asked her what she would like for me to say because I wanted to allow her to have that privacy. However, she has given me permission to discuss all of it. She agrees that awareness for these disorders are important. I will try to keep it as concise as possible, and maybe expand on them later.
As I mentioned in my previous post, Sierra was diagnosed at age 4 with Primary Generalized Epilepsy with Absence seizures. She would be playing and just start staring off, then go back to playing like nothing happened. With different seizure medications and reactions we started homeschooling her at the end of her Kindergarten year. Just before her 7th birthday, Sierra was diagnosed with ADHD and ODD (oppositional defiance disorder) and were eventually persuaded by doctors to return her to a normal classroom because she would get more assistance with managing her ADHD in a traditional setting. Honestly, I believe this was one of the worst decisions we ever made. She was excelling with homeschooling and by 2nd grade had a 6th grade reading level. But even though she had the ADHD diagnosis it still felt like there was something more going on. Her therapist agreed with me and got us connected with someone who specialized in Autism evaluations. She was officially diagnosed with Autism Spectrum Disorder at age 9.
Things really began to ramp up at the end of 2020/beginning of 2021. We were in the process of trying to get her enrolled in ABA, and then Covid hit. Covid delayed her getting ABA until late 2020. She was fine at school, at ABA, in public mostly.... but at home? At home her behavior was awful. Yelling, screaming, destroying things and it just kept getting worse. In September 2020 she was approved for at home ABA to help with her behaviors and other issues she had due to ASD, such as hygiene. Sierra did ok in the beginning with her therapist, but then something changed around December. She was becoming belligerent, refusing to listen, trying to run outside and away from her, destroying different rooms if she was asked to clean. It was insane! But then we started noticing a pattern to when the behaviors would be worse than others. Hormonal shifts from the beginning stages of puberty and whenever the full moon was. She was then diagnosed with PMDD, also known as premenstrual dysphoric disorder. If you don't know what this is, think PMS on steroids!
In 2022 things got even worse. She ran away and then told the officers that I took her to the middle of nowhere and dropped her off! A complete lie, but I hate that it was even said. She pulled a kitchen knife on me not even a week later. She was in a mental hospital for 3 days for evaluation after this. Four months later she was out of control again. Saying some very strange things and acting very weird one minute and completely different the next. After 3 more stays in different mental hospitals, Sierra was diagnosed with DID. Dissociative identity disorder (DID) isa mental condition characterized by the presence of at least two distinct and relatively enduring personality states. One of these personalities is extremely homicidal, specifically towards me. With medication it has been under control. She did have an issue in March of 2023 when she had a growth spurt and had outgrown the dosage. Sierra tried to commit suicide in a spur of the moment, I hate my life moment. Thanking God everyday that her dad found her before she could go through with it! This resulted in another mental hospital stay that lasted 4 days for observation.
Things improved for awhile, minus the PMDD behaviors. Until June 2023. Sierra had complained of having dizzy spells or that her heart would be racing for awhile, but I seriously believed that it was basic teenager for I don't want to do my chores. I mean, isn't procrastination and avoidance normal in teenagers? Sierra had been having a hat flash and was in her room trying to cool off. She yelled at me to come into her room and informed me that her toenail had fallen off. Now, it had already been barely hanging on and it had just come off when it got caught on the blanket on her bed. Very little blood, but she said "I don't feel right" and then proceeded to pass out in front of me! Nothing I did woke her up and it took her about 10 minutes to come around. We called 911 because she had never done anything like that before and we were scared! Her pulse was high but everything else was normal. Doctor said it was due to seeing blood and to drink some Gatorade to stay hydrated. Sierra was mad! No way did blood cause her to faint and she didn't believe it. The next night Sierra was literally bouncing off the walls. Her balance was so bad she was using the walls to catch her before she fell. Two days later, she lost the ability to walk! We spent time in the hospital with no answers. She experienced a tic like seizure not related to her epilepsy. She was literally losing control of her body. Within a couple of months we had some new diagnoses - POTS (Postural Orthostatic Tachycardia Syndrome, FND (Functional Neurological Disorder), Fibromyalgia, and appointments with specialists to get more answers.
In January of this year, Sierra started having more issues with her teacher. She told her that Sierra needed to start excelling to have a place there (a virtual public school in our district that has a physical building if the child wants to go) next school year and to "Get your medical stuff under control." Momma bear got MAD! Who tells a kid to get there medical stuff under control, especially when they are known to have mental health issues along with everything else??? After removing her from the school and going back to homeschooling, Sierra began to see some improvements. She is no longer using the wheelchair unless it's a really bad POTS flare up, and her heart rate stays within the managed range (around 80-90 BPM versus the 175-200 BPM she was at before). She has also received more diagnoses since January - MCAS (Mast Cell Activation Syndrome), hypermobility spectrum disorder (one point from hypermobility Ehler's Danlos Syndrome, will receive new diagnosis of hEDS as an adult), CCI (cranio cervical instability), CFS (Chronic Fatigue Syndrome), and moderate sleep apnea. This poor girl has A LOT going on inside of her. I know this is a lot of letters, my mom calls it alphabet soup, and please know I will try to answer any questions you may have! Love this girl soooo much and wish I could remove it all!
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