It’s been a while since I updated this blog and quite a lot has changed since. 2020 was an absolutely abysmal year, but I guess that can be said by everyone living on this planet. With the pandemic, poor economy, record job losses and just plain rottenness all around, things were really really hard.
But the one thing that made life absolutely difficult for us was Haruka. Initially, I thought that she was going through the typical teenage rebellion and adolescence, however things were different -much different. It wasn’t just poor behavior and being contrarian when it came to following household rules. We notice a lot of atypical and psychotic behavior as well.
For example, when Haru didn’t get her way, she would get very irate and violent, often times throw objects, scream at people and even throw punches and kicks at her mother or me. Her sleep patterns were also erratic, often staying up until very late at night and sleeping until the early afternoon. She even stopped going to school because of her irregular sleep habits.
At one point, she even demanded access to our credit cards or our Amazon accounts, so that she freely buy things on her own. Of course, we refused which made her even more erratic. At this point, we realized that things were not normal and that she had lost touch reality.
Additionally, she would have delusions, and believed that she was being abused, especially when she was not getting her way. The reality is, we rarely, if not ever physically punish her in any way. I don’t believe in corporal punishment, but here were times I had to pull her off her mother when she was going through her violent fits and restrain her. Haru is physically very strong so at times it took a lot if not all my strength to pin her down until she calmed down.
All of this, was not the Haru that I know. Yes, when she was a small child, she threw tantrums and cried a lot when she she didn’t get her way, but she never resorted to violence. She isn’t the happy energetic little girl who acted silly and was fun to be with anymore. She’s often depressed, withdrawn, irritable, angry, violent, paranoid, suspicious, envious or jealous of other people -even of those who have less than she does. We realized that this situation was far beyond what we can deal with and that we need to seek professional help.
Haru kept saying that the pressure of prep school and her entrance exams last year was what was causing her to act out. Not only was she being bullied by kids at school, but she was also being bullied by her classmates at prep school. We knew this was happening and went to both her school and prep school to get to the bottom of what was happening. The teachers at her prep school were fairly supportive and promised to make sure that the bully (a boy who went to the same elementary school as Haru, and was apparently under intense pressure from his parents to get into a good school), no longer bullies Haru. Although the bullying stopped while they were at prep school, the boy bullied her when they were at school. I went to the her elementary school to talk to her teacher, and demanded that he take better care of of his students. But Haru’s teacher was horrible and a completely incompetent buffoon who shouldn’t even be teaching at all. In Haru’s 6 years at that school, he was the only teacher to give Haru a “B” in physical education. This is a kid who was chosen to run anchor in the relay at their track and field event and placed first for her team. The same kid who was practically at the top of her class at her cheerleading, tumbling and gymnastics classes. A “B” in math I would believe, but not in physical education. This stupid teacher knew nothing about his kids, especially Haru.
At first we went to a counselor so that Haru would at least have someone to talk to (other than us) about her problems. We figured that she just needed someone to talk to and vent. But after a few weeks of counseling, her counselor advised us that Haru has much bigger issues and that we need to seek psychiatric therapy for her immediately. Of course, this was very difficult for me to hear, but we decided to take to Haru to get tested.
The result was: Haru is suffering from pyschosis, and and borderline childhood onset schizophrenia. My heart sunk and I was distraught for weeks. I blamed myself to the point where even I contemplated ending my own life because I felt so guilty. I felt that I was not a good father, or that I pressured her too much to succeed. I hated myself and the reality is that I have still yet to come to terms with or forgiven myself to this day. Even though everything I read and did research on points to the fact that this is less likely my fault but more like a chemical imbalance or a heredity issue, I still can’t help feeling that I am fully responsible.
Haru even blames me for this. She would often tell me that she is “like this” because of me, and had even demanded that I move out so that she could get better. I can’t even begin express how those world tore me apart. You could have set me on fire with a plasma blow torch and it would not have been nearly as painful as those words. And what is even harder is that I believed her.
Haru has been on medication since October. At first, she was on a anti-psychotic medication called Olanzapine. This medication has a ton of side effects including rapid weight gain. While Haru was on this medication, she had an insatiable appetite, especially for sweets. Suffice it to say, she gained a lot of weight and grew very self conscious about her appearance, to the point where she refused to go to school anymore.
The doctor then changed her medication to Aripiprazole, a medication that had just as many bad side effects as the first one, expect it didn’t increase her appetite as much. The commercial name for this medication is “Abilify”, which is somewhat appropriate because increases the motivation to do things. I saw a lot of positive effects from this medication. For example, Haru was going to school more often, she spent a bit more time out of her room, and she even went out with here friends from time to time. The only ileffects I noticed was that the medication had a fairly short half life. For example, if she took the medication before bedtime the night before, the effect would wear off by the late afternoon the next day. Sometimes it wouldn’t be a big deal, and she would be okay throughout the evening, and she would be okay enough until her next dose.
Other times, especially if we go out for dinner or something, the depression, anxiety, and the delusions will start to creep in. She would complain about people staring at her, when in reality no one was looking at any of us. She would start to worry about her future, and started to feel a sense of worthlessness. The sure fire warning that she was about to go off the rails is when she starts complaining about her appearance, and start to talk about wanting cosmetic surgery. It would get increasingly worse until she would have a complete breakdown. If we were far from home, the whole trip home would be complete a hellish nightmare.
We told her doctor about the short half life and he said that an increase in dosage would help. However, instead of increasing her dosage of Aripiprazole, to my surprise and dismay, he changed her medication again completely. This time he prescribed her another anti psychotic called quetiapine. Initially, I was not too happy about the change, especially when aripiprazole seemed be doing the trick to tame her irritability.
Quetiapine, like the previous two anti psychotics also has tons of side effects, including weight gain which was the main reason we stopped using the first drug. But the scariest side effect for this particular drug is an increase in suicidal thoughts. Needless to say, I was TERRIFIED of this drug and wanted her off of it immediately. But her doctor insisted that this is the best drug for her.
For the first few weeks after the switch, there were increased talks of suicide from Haru. It scared me so much, that there was a period when I had not slept for several days. I was a afraid that if I fell asleep that something would happen to her.
One day, she left the house saying that she wanted to go to the drug store to buy “something”. I had activated a GPS tracking device on her iPhone shortly after I bought it for so that I could track her location, especially since she was using the train to commute to school. I was so nervous about her leaving the house in her state of mond, that I actually followed her. Apparently she had gone to the drug store to try to buy sleeping pills with the intent of overdosing. Luckily, drug stores are not allowed to sell drugs to under aged children unless accompanied by an adult, so they turned her her away.
Usually kids would keep something like this a secret, but Haru still thinks like a child, so she actually told us what she tried to do. Either that, or she was seeking help so that we’d stop her from attempting like this again later.
After some research, I finally realized what the doctor was doing. Since Haru is still only 13 years old, he can’t prescribe a full dose of an anti psychotic drug straight away. These drugs are way too strong and have tons of really bad side effects that are arguably worse than the disease itself. Because of this, doctors will often put people (not only children) on what is called a titration schedule. This is basically a way to gradually introduce medication into a person’s system so that the can adjust to the side effects. Also, especially in Haru’s case, the doctor is trying to determine the exact therapeutic dosage is for Haru. To do this, he needs to raise the dosage while allowing Haru to adjust to the side effects with each increase in dosage. So essentially this is just a game of guess and check until he can determine the correct dosage.
Haru was initially given 25mg (daily) of quetiapine which is probably the worse dosage. This dosage arguably causes the worst side effects: drowsiness, constant sedation, increase in appetite, and in Haru’s case tendency for suicidal thoughts. For Haru, this lasted nearly 2 weeks (and I must say, those were the hardest two weeks ever).
After about two weeks, the side effect were still there but they were weaker and more tolerable (for everyone). The dosage was then increased to 50mg which introduced a set of new side effects. Haru was feeling less sedated, but as a consequence suffered from insomnia. Her positive symptoms (which I will explain later) gradually subsided but she still experienced them. Her negative symptoms got worse -a lot worse. This naturally leads one to think that the medication is either not working or making things worse. And I found that because of this, a lot of people tend to stop using quetiapine or any anti psychotic for that matter.
About a week later, since Haru’s positive symptoms were subsiding a bit, so the doctor boosted the dosage to 100mg/ day. Again, slightly better results with positive symptoms, but the negative symptoms were getting worse. The side effect were mild, but there was definitely a noticeable increase in appetite and lack of sleep.
Another week goes by, and another increase in dosage. This time it was upped to 125mg/ day. No significant increase in side effects, and the suicidal thoughts have seemed to gone away which is a huge relief to me. The appetite also subsided a bit, but she has had significant cravings for frozen fruits, to the point where she would not eat much of anything else. As a matter of fact, for a while she complained of nausea if the food had any kind of odor to it, so frozen fruits were the only things that wouldn’t make her nauseous. Positive symptoms were still there, although not as bad as before. Negative symptoms were about the same.
Haru has been at 200mg/ day for the last week and a half or so. Currently, the side effect continue to be the inability to eat food with any kind of odor, but she is able to eat sushi or sashimi, and of course frozen fruits. She has grown a strong craving for Monster energy drinks which I suspected was REALLY bad for her. She bought three cans of it last week and drank them which seem to have made her positive symptoms a lot worse. Upon consulting her doctor, we found out that any energy drink is extremely bad for anyone who is experiencing psychosis or schizophrenia, as I suspected. Since Haru is going through this rebellious adolescence stage, she threatened to stop taking her medication if she can’t have her energy drink. But after a while, she was able to think rationally and agreed to not drink that stuff -at least for now. Who knows, she’ll probably change her mind tomorrow.
If her positive symptoms subside this week, her dosage will most likely be boosted again next weekend, and this whole process will continue until she is at the therapeutic dosage, and both her positive and negative symptoms subside and she is able to function normally again. At least that’s the plan.
I have been mentioning positive and negative symptoms a lot. What are they and how are they different? First of all, despite what the name may suggest, neither are good. The end game to reduce or eradicate all symptoms (both positive and negative). But of the two types of symptoms, the positive symptoms are the most concerning and the most terrifying for the person who suffers from psychosis. The negative symptoms are more of a concern for the people around her.
Positive symptoms consist of delusion or the inability to distinguish between what is real and not real. In Haru’s case, she believes that people are staring and/or talking about her when she is out in public. So the thought of going outside of the house terrifies her. Additionally, she is under the strong belief that she is ugly, badly deformed, and doesn’t look like a human being, so she doesn’t want to go to school or anywhere for that matter unless she undergoes cosmetic surgery so that she looks more like a human again.
Other positive symptoms are visual and auditory hallucinations, which Haru is also experiencing. She says that there are people in her room, so she always has the need to wear her day clothes even when she is in bed. She also says that she sometimes feels things touching her.
All of the symptoms above are positive symptoms, and with proper medical treatment, these symptoms should go away first, and fairly quickly. However there are second set of symptoms that is caused by a lack of dopamine reaching a certain part of the brain. Dopamine is the “reward” chemical. So anytime we do something that is right, or feels good, or anything we want to do again, we do so because dopamine is secreted which makes feel good and positive.
A person who is suffering from psychosis or schizophrenia, a part of the brain is not getting the dopamine that it needs. And because of this, there is a lack of motivation, depression, irritability, anger, etc. Even if the person is doing what he/she really enjoys doing, since a part of their brain is not being rewarded with dopamine, there is no joy felt, nor is there any motivation to do that thing that they enjoy agsain. As a result, depression, lack of motivation, withdrawal, etc. sets in.
Negative symptoms are more difficult to fix. Often times, negative symptoms may need to be treated by separate medication or additional therapy. For Haru, the negative symptoms fluctuates heavily throughout the week, or sometimes even throughout the day. She would wake up in a fairly okay to good mood, but by mid day, she would be in a very foul mood.
For Haru’s sake, we want to get rid of both the positive and negative symptoms, but our sake we want to get rid of the negative symptoms more than anything. This has been very difficult on all of us to the point that even I have not been too functional. I am also going through depression now, and am looking to go on medication or supplements to relieve some of these bad thoughts. But unlike Haru, I am a lot more rational and not suffering from psychosis, so I am able to deal with it a bit better. At the same time, I can also see this getting worse and even debilitating if this whole situation continues to get worse.
I have already bought some mood stabilizing supplements called N-Acetylcysteine which I will be taking. It’s also very helpful in stabilizing negative symptoms so the doctor gave be the okay to let Haru take it as well to help stabilize her mood. I will talk about this in more detail once I start taking it.