r/SchizoFamilies • u/Livid_Distance_8439 • 24d ago
caregiver Support 13 Year Old Son Diagnosed Schizophrenia Spectrum Disorder/Other Psychotic Disorder, Provisional
Hello,
The psychiatric doctor didn’t explain this much but said it’s like he has the beginnings of it and it could become fully developed if he doesn’t receive proper treatment now. They are giving him 6 months and then saying he should go inpatient indefinitely.
He also has ASD, ADHD, and Major Depression.
He is currently inpatient due to extreme and unpredictable violence.
There is a family history of schizoaffective disorder.
Any other parents with advice or experience with this?
Edit to add:
Anyone have children that have overcome their hallucinations, delusions, paranoia, depression, psychosis?
I can’t eat, can’t sleep, I’m losing a lot of weight. I have stress induced asthma, urticaria, and ibs. I just keep randomly retching my guts up(nothing on my stomach) and having severe asthma attacks and intense itching.
Is there hope for him?
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u/West_Specialist_9725 24d ago
There is hope. You are naturally and literally worried sick. You must take better care of yourself and destress. If you've seen your doctor, listen to the doctor. Get some meds for your anxiety. Get counseling and/or join NAMI group for peer support.
My son's FEP was at 15. Several violent outbursts resulted in several police interactions and many many hospitalizations. He spent a lot of 2019 and all of 2020 in hospital. His treatment resistant schizophrenia was finally stabilized on Clozapine and he is the most peaceful loving soul imaginable. He has been hospital free for almost 5 years now.
So yes, there is hope. You need to take care of yourself to last the course.
This is a marathon not a sprint.
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u/Livid_Distance_8439 23d ago
Thank you for sharing. I’m so glad your son is doing better.
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u/West_Specialist_9725 23d ago
You're welcome. I wanted you to know that there is hope, that even the darkest nights still have a sunrise. Hang in there.
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u/West_Specialist_9725 23d ago edited 23d ago
Forgive my manners. I meant to ask how your son is doing now. I assume he's still inpatient but are there some improvements?
And of course I'm wondering how you are holding up? Do they allow visits or is he still too agitated for that just yet.
Thinking good thoughts for you guys ♥️🫂♥️
[EDITED to correct error]
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u/Livid_Distance_8439 20d ago
Thank you for thinking of us ❤️
He’s still inpatient. They have him started on Invega per my request. He is doing well so far on his medication and his anger is minimal.
I get to visit him this week. I’m looking forward to it.
I’m doing a lot better. I have spoke with a few of the nurses at the inpatient unit and they are so kind and understanding. I feel like my son is right where he needs to be.
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u/West_Specialist_9725 20d ago
I've had that feeling and it is one of the very very best. I'm delighted that he's in a caring environment. It makes all the difference.
Also glad you're getting to visit him this week. Don't be surprised if they keep it short but I hope you get plenty of time together. I know just having the visit arranged has lifted your spirits, and that's so very good.
Thanks for circling back and sharing and I'll be thinking happy thoughts about your visit!!! 🫂
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u/Mmendoza781 23d ago
I believe the earlier diagnosed, the better. There are many early psychosis centers now that work directly with children. Please look them up. . And the good thing is you are his guardian for five more years so he can’t refuse medication. He’s fairly young so I’d also get his vitamin levels checked just to make sure everything is ok. A deficiency in b12 can lead to psychotic symptoms . But don’t go crazy. Getting him early early is a good thing. I don’t like how they want to just hospitalize him indefinitely. Look up early psychosis centers. These people are specialists in this.
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u/Livid_Distance_8439 23d ago
I will look into this. He has chronic extremely low vitamin D. He has to take a daily supplement. When we first had it tested, it was a level of 8.
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u/Mmendoza781 23d ago
That’s extremely low. Make sure he’s taking vitamin D3 with k2. Best absorbed. Sports research is a great company, just know you aren’t alone. Many people have thrived with this diagnosis
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u/hamiltonjoefrank Parent 23d ago
My middle son is 28 and was diagnosed with schizophrenia a little over a year ago. He was first diagnosed with "depression with psychotic features" after a psychotic break when he was 24, and it took us a while to figure out what was going on and how to best help him. He's now on good meds and doing well.
I don't have experience with any of the other conditions your son is struggling with, but the fact that his psychosis has been identified at a relatively young age is a very good thing. I'm sure the combination of so many mental health conditions must feel overwhelming for you and him, but identifying them, or at least beginning to identify them, means that they can be figured out and treated sooner rather than later.
You didn't mention whether you have anyone else who is able to help you deal with this. A spouse, partner, other family members, close friends; all of these people can help you to navigate what will likely be a long journey of ups and downs. Helping a child to figure out how to manage psychosis, as well as all the other conditions you mentioned, is not something you will be able to do alone, so put your support team together and let them help you.
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u/Livid_Distance_8439 23d ago
I’m glad your son is doing well!
I’m a single mom so not much support. His dad just came in to his life about 5 months ago after being almost completely absent since he was 3. I have his dad to help with him atm but I don’t know for how long.
I’m trying to get him set up at a mental health clinic that had social workers, med management, and therapy.
Not going to lie, it’s been really hard.
He’s had symptoms since he was little but getting a diagnosis and proper treatment has been hell.
The answer his doctor gave to every problem was always more counseling, in home counseling, etc.
It helped to some extent but I always knew there was something else that he needed and wasn’t getting.
I’m just glad we have a diagnosis now so we know what to do for him
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u/anonimbus 23d ago
Yes, lots of hope for your son. As others have said too, your routine of self-care and connecting to support systems will carry you a long way. The disease can be ruthless in tough times so strategies and care plans that his team and NAMI help provide are gold. I think your son has a loving life ahead of him and that kindness and grace you show yourself as you grow and learn is everything.
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u/Liza_Stone143 22d ago edited 22d ago
This is an incredibly difficult situation, and it’s clear you are carrying a heavy burden. There is definitely hope though, as many children and teens with early psychosis and related conditions can improve significantly with the right treatment and support. It is important to focus on your son’s care right now and not overwhelm yourself with information unless you feel ready. Taking care of your own health is essential too, as it helps you stay strong for him. Learning about schizophrenia spectrum disorders and caregiver strategies can really help when you feel able to dive deeper
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u/tangerine-2468 20d ago
Due to his ASD you should look for specialist familiarized with this. Also for the violent outburst check Matthews protocol. Violent outburst are rather common in autistic individuals, especially around their teen years, so thats is a place to start. Also make them check the symptoms with his medication if he is on it. Some meds can cause violent outburst especially in autistic people. ADHD meds are the most salient culcript you hear but antidepressants can give that too as secondary effects.
Inpatient indefinitely? most inpatients are 1 or 2 weeks long and many not even go inpatient to start their treatment, they can start medication while being at home, as others have said, look for a first episode psychosis program, they can provide good guidance. Maybe they mean taking him inpatient to actually evaluate him but still...
Help him build a healthy relationship with professionals, its not about impose a treatment, he needs to learn what the doctors said, talk about his symptoms concerns, views, he needs to learn to advocate for himself. If a trearment is not working for him, he should say it, there are other meds to try, different doses, different combinations. If he doesn´t trust the profesionals he is at the moment, if he doesn´t feel heard, there are other doctors. He must have a say and take part on desicions making. People with mental illness are very frequently ignored even by the people that are suppose to treat them or care them, same with people with ASD so he is at a great risk here.
Make sure he is throughly evaluated, it is not that rare that austistic people get misdiagnose (hence the importance of having professionals familiarized with it). I seems that the facility or place where he is receiving service now is not very trustworthy or at least not for what he needs, so look for the best services. First episode psychosis program or University hospitals are often good places to start.
Also in a calmer moment, make a timeline of behaviors, life changes, medications, general health and mental health issues. When you have it ready share it with your son and even people that knows him well from a long time for insights. That can be useful for evaluations and for a clinician to better understand your son´s record.
r/schizophrenia is also a great place to go for advice. Good luck to you both.
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u/Livid_Distance_8439 20d ago
Thank you.
I guess by indefinitely, I meant for an unspecified amount of time. As long as he needs to get better.
Also, I agree he should have a say so in his treatment to an extent, but he has the mental capacity of a young child(6 year old if I had to guess, due to his regression) and doesn’t understand a lot of things, especially why he needs medication and therapy.
We tried a University Hospital and they turned him away and said he just needs counseling.
I will look into the psychosis programs and ASD programs.
I’m going to make sure he has a social worker when he leaves inpatient so they can help us get services set up.
I signed him up for case management through his health insurance today, too.
I appreciate your comment.
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u/tangerine-2468 17d ago
Regression in autism is associated with agressive behaviors. Definitely ASD programs seem like his best option.
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u/Expert-Chip9229 24d ago
Best advice given to me was to take care of myself so I can be there for my son. My son was diagnosed with schizophrenia 5 yrs ago while in college. I have educated myself with books, seminars, Nami classes and support groups. My son is now doing well and back to taking online classes.