Prodomal? Just hanging on

Family
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Hello, my son is almost 14, diagnosed with Mood Disorder with Psychotic Features. He takes Geodon, Lamictal and a small amount of Adderal.

I feel like I am watching him go downhill slowly. As long as he takes Geodon he can function. He still goes to school but barely does his work. They give him tons of extra help. His behavior in school has deteriorated. There are some kids he think stare at him like they want to kill him.

In appointments with the psychiatrist he says things are fine. He says he hasn’t heard any voices since sixth grade. I don’t think thatt’s true, but i hope it is!

Our district doesn’t have a program for kids with Emotional Disabilities, so I feel like they are trying to jusy get him through, year to year. My son wants to stay in the public school to be with his friends.

As he heads to High School, I am trying to figure out how to make it manageable. Do kids sometimes have a shortened day?

I feel like we are setting him up to crash.

I have found a special ed advocate, and hoping she will have suggestions.

Thanks for “listenening”!!

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Sorry about all the typos! I have a tremor and typing is a pain!:slightly_smiling_face:

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Hi Hummingbird,

Gosh, we all have that just hanging on feeling at times.

I wish your thread title had that your son is 14 years old, we do have people with more experience in the younger folks. Have you had time to read all the threads that have been posted recently regarding younger sufferers of brain diseases? If you can find time, you will find some solid information.

My thoughts are that your son’s desire to be in public school with his friends is important.

I also think that “just trying to get him through year to year” might not be such a bad thing. Our family members need lots of “normal” experiences and are best motivated by things they want to do. I know its hard when he worries about the kids that are scaring him.

Have you thought about finding him some CBT help? Cognitive Behavior Therapy can help him handle stuff like the scary stares. Sometimes, depending upon what services our school have, I think we have to be able to tell places like schools what we think would help. A shorter day might help, I know when my son is tired, dealing with everything is harder. My older son had autism. His high school gave him a pass to be able to go to the library when things became too much for him to handle.

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It’s good that he’s not completely isolating. My daughter is the same way - she still likes school (she’s 10) and being with her peers although she often thinks they are out to get her/hurt her/hate her etc. We gave up on the work aspect and she does some but homework - forget it. It’s enough if she does classwork. She’s never been better than a C student and has dyslexia.

In regards to his symptoms, I would keep a log. He may not be comfortable talking with a doctor like he would with you. He also may lack insight into his symptoms - my daughter definitely does. She forgets about ‘episodes’ five minutes after she has them and it’s like they never happened! My husband will call her to check on her and everything’s fine, then a few hours later when I talk to her she’ll tell me about this, that, and the other thing that happened. I’m finding with her she has one person she completely trusts: me. She has hallucinations and delusions involving my husband and stepson. Her delusions of me usually involve me telling her positive things or screaming at her.

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It’s possible and I understand the fear there. My daughter six weeks ago was beating her head against the wall regularly and throwing things. In the past, she’s attacked my son, a classmate, and our pets. I would suggest just responding to the situation if it occurs and try not to borrow trouble that hasn’t arrived yet. Be aware and alert for it, but realize that might not be the outcome for your child. Most people with SCZ are not violent. Even so, there’s nothing you can necessarily do until it happens. There’s not a way to actually prevent it, as far as I know, other than taking some basic precautions (locking up knives, meds, guns, poisons, possible weapons). Realize that a nonviolent restraining may be necessary (for my daughter I get behind her, wrap my legs over her legs above the knee, hold her arms, and just keep my face out of the way of her thrashing head, or I do a bear hug from the front. She will beat her head against my shoulder but usually works to calm her down). I realize with a boy this may be harder so you may want to talk with your therapist or psychiatrist about the best methods.

I agree with @hope there are some threads about younger kids (I’m one of the posters) so if you search for child or early onset you might find some good results within the forum.

Here’s one example: https://family.schizophrenia.com/t/early-onset-childhood-schizophrenia/4759

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Thank you! You are right about not borrowing trouble.
In the past he was very physically aggressive to me, but mit lately, thank God.

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Sorry I didn’t put many details in my first post. He has heard command hallucinations telling him to hurt people. After a hositalization he stopped saying he hears them, although very rarely he has said he dtoll sometimes foes.
We also have very severely autistic twins who set him off by making loud noises.

I have been reading old posts and learning a lot!

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OH! That’s a completely different thing entirely. Command hallucinations are very powerful and can be dangerous, and escalate quicker than other hallucinations from what I understand. They typically involve commands to do things like hurt others or themselves. My daughter gets those occasionally but it’s infrequent currently. And right now she’s still able to distinguish right and wrong so she fights against the violent ones. Somehow, despite all of this, that’s a line she doesn’t or won’t cross very easily (thank goodness!)

Has he been making any verbal statements lately? Showing signs of loss of control? Been violent to inanimate objects? Having rages or irrational behaviors you can’t talk him out of? Do you have a safe room in your house? Somewhere that either he can be locked or you and your sons can be for safety? Do you have a safety plan for you and the other kids? How old are the twins? What kind of family support do you have?

I can only tell you what I’ve done to determine when we’re in a “crisis” that needs intervention, and when it’s just a bad day. Maybe that will help you (be warned, it’s a lot of daily monitoring and note taking).

I would monitor and track his symptoms to determine if there’s an increase in symptoms. For me, I give a score for each day based on symptoms. Some symptoms are allowed to be numbered individually (i.e. how many hallucinations she has in a day, how many times she hears voices, how many times she discusses killing herself or wanting to die) and others are just a single score of 1 (i.e. sad or down, afraid). I total those up and it helps me to see when her symptoms are worse. I have 25 symptoms I track for her based on the DSM’s diagnostic criteria for her disorders (I use an Excel spreadsheet - easier to visually track that way). A score below 10 is acceptable but anything approaching 20 is close to crisis. Our highest score was an 18 out of 25 and we admitted her the next day. This last time it was a 16 of 25 but she was very suicidal. If she talks about suicide or wanting to die two days in a row, we consider that a mental health crisis and work to admit her again. You’ll have to build your own methods for judging the behavior and symptoms based on your child. I also keep a log of activities, situations, etc.

She comes to me and describes her hallucinations and other events so I can record them. Be warned - that may break your heart more than anything else once you open that door but it gives a really clear channel of communication. I’ve slowly but surely built her trust up to the point where I’m a nonjudgemental confidante. She still has times when she doesn’t trust me or has paranoia but I’m still able to work through it with her by finding ways to back the stress down for her. It’s very time-consuming.

For my daughter, she will tell me things she will tell no one else, even and especially doctors, because she’s learned not to trust them (IVs, admissions, etc) and fears them on an instinctive level. They, unfortunately, have collectively added to her paranoia so she now believes they will hurt her, not help her. In addition, she lacks insight and many times after an episode she forgets she even has one.

Autistic twins plus a schizophrenic son? My heart goes out to you - that’s a daily feat of mental strength the likes of which I cannot imagine. I have two mentally disabled children myself and no day is a cake walk. Most days though, I wouldn’t trade it for anything. They make me a better person than I ever would be otherwise. Hang in there and try to remember to take it one day at a time!

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Thank you so much for your reply. It is hard for me to put in writing that he hears command hallucinations.
He used to tell me everything, but now he says he can’t trust me . He really doesn’t want to go back to the hospital. It seemed like a very fancy summer camp to me, but still it represented a very hard time in his life.

He is able to seem okay in public, but it is getting harder for him to hide things at school.
We used to do lots of things together but lately he has been very angry at me at the drop of a hat.

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I am really encouraged that he is still interested in socializing! It’s probably partly the teen hormones making him so annoyed at me. Just after I typed the last thing he walked in and was smiling and pretty friendly.

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Our boy is almost 14 (end of this month).
I’ve gone through the angry phases. Each time, there was a different path followed, so I remind myself that the anger is just that: a phase, not necessarily indicative of a future crisis.

Usually med changes occurred. The Dr’s seem to want this information, particularly if he has been more sensitive lately. Anger, pissed off, touchy, defensive, offensive, etc…

Our reaction changed over the years. We realized, at least for us with our son, that he enters new phases very fast. We don’t take anger lightly…we can’t. We don’t go overboard, and may even choose to NOT correct the snapping…but we do notice it, and watch carefully.

And yet…as @Author_Charity_Marie referred to, a pattern sometimes develops. After a few incidents, we started to notice when it was unwise to push things (like leave him unattended, watch certain movies, visit certain places, or decrease expectations).

I told the Dr about the anger increases or decreases. By having the Dr’s involved, they sometimes would put a safety in place that we hadn’t thought of. (For instance, when he was at home, but under suicide watch.)

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Yes, you are right that it’s really good to socialize.

There are shortened school days in most high schools for kids for a variety of reasons, but if he likes school because his friends are there, there may be a room where kids go when they don’t feel up to being in the regular classroom. I worked at a school where there was one of these and it worked really well for the kids who needed it.

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That’s a good idea— he would definitely make use of that. Right now he can take his wirk to the guidance office if he is overwhelmed, but he doesn’t like to.

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I am responding to your questions about school. A modified schedule is a reasonable request due to the severity of his disability. I am very surprised to hear that your son’s school district doesn’t have services for students with emotional disabilities. I don’t think that’s legal. Your advocate should be able to guide the process but if you want him in his local school, you should be able to get a reduced or modified schedule focusing on classes that he will be successful with. If you don’t get his needs met through the local school, appeal to the district or board. Hopefully they will see the benefit to allowing him to take his time.

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Thank you! Our district is tiny, so they would send kids to a private placement if they think it’s necessary. But they seem to be in denial about a few kids with MI. All they provide is 30 minutes counseling a week.

My younger sons are bussed to a fantastic school for kids with severe disabilities, but in their case it was really obvious they couldn’t stay in-district.

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Our Middle School called in a counselor to meet with his older brother at school once a week. Sibling support they called it. Older son (non dx) went voluntarily once, and refused to go again.

They did NOT want to meet with younger boy (dx), as they preferred for him to stay with the Drs he saw each week. He was suicidal at this point.

It was the same agency that was on standby though to hospitalize younger son. I wanted older boy to attend, to make sure he felt safe. They wanted this too. They met with him twice, once to meet, once to start “therapy”. It was part of younger sons (dx) safety plan. I’m glad they offered it, and met with them. (Our Insurance paid. The agency came to school once a week to meet with special concern students.)

As I said, he refused to go again. He said he didn’t feel like he needed to. Instead, he really went out of his way to spend extra time with either husband or I.

It’s still that way.

(I hope to H-E-double-toothpicks that the older boy does not develop scz…he’s high risk. No signs though…and yet, this is the one who doesn’t feel that psychologist can be trusted. He can’t explain “why?”…just refuses. He’s touchy about medication too. Also anti-drugs to the extreme, and will state the correlation of pot with scz.)

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Have you tried a letter from a psychiatrist? If you provided that, they are required by law to comply. Might get you started at least. Therapist could do one too. Both of mine have offered.

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Hummingbird -

Understand your concerns and hopefully, I can point you in the right direction. My son was in similar situation when he was a freshman. Had always had excellent grades but when he got to high school, everything went downhill 90 mph. Started getting suspended (45 days at a time!) with no help from the school. I finally pulled him out and let him do online school. That may work for someone who doesn’t have ADHD, but my son couldn’t stay focused enough to make it work. The next school year, when he should have been a sophmore, we moved to an adjacent community, but different school district. I had him take 10th grade over again. This time, I was told about a 504 plan. He was able to go to school in the morning (up until about noon time) then a van would take him home. He then continued school with easier-type online classes (2 if I recall correctly). He also had special accomodations at school. He was allowed to take longer amounts of time to take tests. He was allowed to re-do work if he got a really bad grade, that kind of thing. I would ask the high school if they have a 504 coordinator (my son’s high school isn’t huge but they did and she was a Godsend; her son has a mental illness so she gets it!). Hope this helps you. If you have questions, just let me know.

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Thak you, Lisa S. ! Did your son get suspended due to behavior issues? My son’s academics and behavior plummeted from sixth to seventh grade. He already had an IEP, but he went from B’s and C’s to D’s and F’s. In 8th things may have hit a plateau.

I am kind of flailing because sometimes he seems fairly okay (as long as he’s taking Geodon), and other times I get really worried.

The school psychologist already knows and likes his new therapist, so hopefully we can have some meetings in the near future.

Thanks so much to everybody. This is even lonelier than being an autism parent.

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Hello @Hummingbird !

As for High School. Its better suited for half days. I didn’t do half day. (they didn’t have that when i was younger)

BUT (my brother was going half day…to high school…and half day to get his pilot license in college) So there is a way for your son to still maintain his social contacts and graduate with his friends in school.

My parents got my Brother a used car so he could go to High School at the same time he went to college.

I think because your son qualifies for “Special Accommodations” based on his disability. You might be able to do Half Day…

Hope this info helps.

God Bless

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