I am so happy for you. Hope is the best. I’m a PP who can relate to your experience and I know how hard it is to find light. I hope for continued upward movement.

Wanted to update to say that we found a PHP program that he says he likes. Found a psychiatrist who has many years of experience with OCD and also psychosis.

At the PHP, his therapist is male and I think that made all the difference as it is now clear that many of his intrusive thoughts are sexual in nature (which is a whole subtype of ocd) and he felt comfortable sharing with him while he never wanted to tell me the content of the thoughts except they were “gross” and “people think I do bad things but I don’t”

His meds seem to be working. He’s having fewer outbursts and his behavior isn’t erratic anymore. He still has his compulsions, hand washing, opening and closing doors and drawers particular number of times etc but he isn’t just pacing and unable to settle.

He also is clear that the “voices” are internal thoughts and they make him angry because they’re so unsettling and feel threatening. He’s learning how to explain how he feels.

The psychiatrist and therapists really think this is OCD and that he has a missed autism diagnosis which makes it difficult for him to name and explain his emotions. (This completely tracks with me.)

So, working diagnosis is OCD with poor insight but obviously we will be working with a care team for a long while and that may change especially because ocd and psychotic disorders can be comorbid.

Dunno if/when we will return to school but the PHP is a huge respite and I saw my son smile and laugh today. I had a normal conversation with him. I had a glimmer of normalcy and hope. For all the PPs that have been through this before I just want to have you all over for dinner and commiserating. Thank you thank you thank you.

Hugs, OP, and thanks for the update. We’re rooting for you and your family.

Y’all are so kind. I can’t tell you how much your support means. We are now in a PHP and have weekly psych support. We meet with the community services board on Wednesday to get started with the first episode psychosis program.

One foot in front of the other. Big love to anyone else who has dealt with this. We can do hard things and this is a haaaard thing.

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

Me, too, OP. You are a really good parent.

We are in the Virginia First Episode Psychosis program that will help with psychiatrists, therapists, group for this illness. For overall health my adult child did one year at a concierge internal doc for all the testing for other illnesses. Insurance did cover EKG, MRI and testing for various illnesses. Nothing else came up.

Psychiatrists are absolutely overloaded with work. Many DOs have moved into psychiatric care but are not good for SSI disability determination attestations.

You’ve gotten good advice about first episode psychosis-hopefully this is complicated ocd and not psychosis but it is worrisome enough you should proceed as if it’s a psychotic break at this point. That means time is of the essence in terms of getting seen by FEP experts.

Anonymous wrote:I haven’t had him seen by his pediatrician, only psych. And yes, he is off the adhd and ssri meds as we play med pin the tail on the donkey. We’ve also been in touch with Turning Point which is FFX’s first psychosis program.

It’s so much worse in the evenings than the mornings.

Thinking about you and hoping it is a peaceful night.

I haven’t had him seen by his pediatrician, only psych. And yes, he is off the adhd and ssri meds as we play med pin the tail on the donkey. We’ve also been in touch with Turning Point which is FFX’s first psychosis program.

It’s so much worse in the evenings than the mornings.

Anonymous wrote:I’d try to get into your Virginia first psychosis program. Call Arlington Community Services Board (CSB), Alexandria, CSB, or Fairfax CSB. They’ll have a whole program set up to manage delusional thought and hallucinations. It was a psychiatrist, counseling and group sessions.

In Maryland head to John’s Hopkins speciality clinics.

The private psychiatrists usually don’t know how to manage psychosis. Nor do they have programs.

These programs often are called "first episode psychosis" (FEP) programs. The thinking is that long term outcomes are better when first episode psychosis is properly treated. In addition, to the above suggestions, and the one earlier in the thread for UMD, Sheppard Pratt in MD has a FEP program called "On Track Maryland" https://www.sheppardpratt.org/care-finder/ontrack-maryland/. The website has contact info for the program.

The program part can be important for FEP, because there are all kinds of other issues that are impacted like work and school as well as disability benefits and family education/therapy.

I encourage you to take a NAMI Family to Family class -- good education about a variety of diagnoses and the issues that arise for family/caregivers.

One other thing—SSRIs and ADHD meds definitely make psychosis worse. This is an acute call to the prescribing doctor if your kid takes these meds.

I’d try to get into your Virginia first psychosis program. Call Arlington Community Services Board (CSB), Alexandria, CSB, or Fairfax CSB. They’ll have a whole program set up to manage delusional thought and hallucinations. It was a psychiatrist, counseling and group sessions.

In Maryland head to John’s Hopkins speciality clinics.

The private psychiatrists usually don’t know how to manage psychosis. Nor do they have programs.

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

As a parent with a son who had PANDAS, I believe this wholeheartedly. My child developed OCD overnight. Once we found out he’d been having strep and were able to treat that, he improved dramatically.

Anonymous wrote: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?

Definitely rule out any type of illness that could have triggered neuro inflammation.