I just wanted to send you best wishes and a virtual hug, OP.

PPs with personal experience, thank you so, so much for posting. It has helped me tremendously.

He went downhill so, so fast. He’s on an atypical antipsychotic but they take a long time to get to full effectiveness. He’s having fewer episodes, but they’re not gone.

I am used to having to help him, to advocate and all of that. It’s been our reality since he was born. But seeing him so deeply troubled and so removed from reality is just horrible.

I am very sorry you are dealing with this. I want to emphasize figuring our a medication. This will take far more of your time than seems reasonable or fair. I would recommend starting a journal ASAP. Daily, even hourly, if needed, when things are particularly bad. You can use this to chart progress and set backs. You can also see trends (and possibly triggers - for my kid, the OCD is much worse (and meds barely work) if sick with a cold).

As to medication, we worked with a doctor for years and tried so many SSRI and SNRI meds trying to target OCD. (We had to set aside the ADHD treatment.) It was so so so hard. Some would work a small bit, others had side effects that were intolerable. Eventually, we lucked out with trying Anafranil. This is not typically a first line OCD med for children. I will tell you it has saved us.

I don't take any day for granted. We could be back where you are in a minute. Please hang in there.

Anonymous wrote:My son is either having intrusive thoughts or is having a psychotic episode. He is talking out loud about people saying things that aren’t true and is asking for constant reassurance about things that he knows (his birth story, the names of his relatives, where he’s lived, etc). He is 15. This is new as of the last month.

He is not a danger to himself or others and when he’s at a hospital he holds it together and is almost silent. It’s only at home that he “relaxes” enough to have his verbal outbursts.

He’s also washing his hands 20+ times per day.

Does anyone have any experience with something similar? Psychiatry recs?

Kellar Center said he wasn’t a good fit because he was so quiet. Inpatient was a horror show and might have made things worse. He was isolated and scared. We pulled him as soon as we could.

I have OCD and anxiety. My child has autism and depression. Here's what stands out for me. The hand washing and asking for reassurance sound like OCD. The "people saying things that aren't true," just isn't a feature of OCD. With OCD, you are fully aware that your behavior isn't rational. You don't hear voices or think that people are saying things. You are fully aware, that you, are in essence, doing this to yourself.

My child had a severe episode of depersonalization when they were depressed where they didn't hear voices but they needed reassurances similar to your child. Out loud, they would be saying, "my name is Larla and I am real." They said it over and over again. However, this only lasted one night. And again, there were no voices. My child just felt completely separated from their body.

I would be concerned about schizophrenia. I wish you and your son the best of luck. I know how hard mental illness is on everyone in the family.

Anonymous wrote:This sounds exactly like my older sister, who was diagnosed with paranoid schizophrenia in her early 20s but there had been signs in her late teens. Early diagnosis and treatment (especially medication and therapy) would have made a huge difference for her but she presented so normally when around professionals and people outside our family that it wasn't diagnosed until she had a major psychotic break in college.

Same happened to my best friend’s brother.
Their older sister is a Psychologist and even her didn’t noticed anything atypical.
Bestie’s brother started hearing voices in his early twenties and was diagnosed with Paranoid schizophrenia that same year.

My son, who had ADHD and low processing speed, started to develop mental health issues at age 15. It initially started with depression and school refusal and moved on to intrusive thoughts and repetitive behavior and severe anxiety. To make a long story short, he definitely had psychotic features for some time and eventually had a psychotic break.

One of the problems we noticed is that while he sometimes admitted to hearing voices, he didn't always. And sometimes he admitted to trying to kill himself and other times, he vehemently denies it and says the doctors made it up.

Back to the short story. Most important thing is medication. Finding a prescriber that listens to you - which is no small undertaking. Finding the right medication (and this is no easy task - we have years of trials, some of which failed miserably right away and some worked so well we had so much hope that one day just stopped working). Staying on the medication. And keeping life in order. Structure and routine are important and sometimes as a parent it becomes you making the structure and routine happen.

My son is successful. He found a good medication routine. He is taking it - now, but not before a lot of crises. He is in school He has a job. But the level of assistance he needed to get here if far beyond what most people expect to have to provide and he still needs more than a typical person his age. If you met him, based on maturity and the amount of assistance he needs, you might think he's a brand new high school kid who needs a push, but he is much older.

Almost forgot -- diagnosis they ended up settling on is bipolar II with psychotic features, plus ADHD. That's a tough combo to medicate because most doctors don't want to medicate the ADHD in someone with the difficult mental health issues he's faced. We use a PNP because this provider listens better than any psychiatrist or other professional he's seen and he's cooperated with the treatment plan she developed.

Good luck.

Also try NAC supplement, you can buy it in pills or a flavored powder.

There is new thinking that OCD and psychotic disorders are related to inflammation in the body.

If this is a sudden change did you have him tested for strep, lyme, and walking pneumonia? If it is sudden onset it could be Pandas. Do the symptoms improve after a course of antibiotics?

I’m in Fairfax County- and they have something similar to the above….with a 6 month waiting list, which we are on. I’ll keep plugging away until I find something. We DO have psychiatric support but need something more as well.

OP, sounds like you might know this already but if it is a psychotic episode, early intervention is key. I would contact a program this: https://www.medschool.umaryland.edu/marylandeip/

I’d be beating down the doors of psychiatrists that treat psychosis. There ought to be someone out there who will take what you are saying at face value and who can discuss a game plan. You might have to make many many phone calls.

It could also help if you have a pediatrician or psychologist who will listen to you.

You can use this directory to find an ocd therapist https://iocdf.org/find-help/

There are therapists who will work with patients on an intensive basis when they are crisis.

Good luck!

Set up hidden cameras and record the behavior to show to a professional.

Anonymous wrote:Thank you. That is my concern as well. I’m hopeful that early diagnosis and treatment will help him, especially before he turns 18.

He's really lucky to have you as his parent. As a college student looking for answers to my sister's strange behaviors, I found the book, Surviving Schizophrenia by E. Fuller Torrey, MD. His sister had paranoid schizophrenia. It was eye-opening and I bought copies for my parents and told them the description fit my sister. They did not appreciate my suggestion and it took a very public psychotic break for them to acknowledge she had the mental illness and get her some help. Medications and therapy have come a long way since then.