ISO info on psychosis in late teens/early 20s.

[Anonymous]

My DD was initially thought to be schizophrenic but her delusions were due to severe depression. She was hearing voices. We managed the severe depression and PTSD from trauma and so far, after hundreds of $k, I think we are on the right path. But she’s only 15. Still young and so may evolve. However, if knowing that psychosis can also come with severe depression is helpful, please let her know.

[Anonymous]

Anonymous wrote:My DD was initially thought to be schizophrenic but her delusions were due to severe depression. She was hearing voices. We managed the severe depression and PTSD from trauma and so far, after hundreds of $k, I think we are on the right path. But she’s only 15. Still young and so may evolve. However, if knowing that psychosis can also come with severe depression is helpful, please let her know.

Yes, understand that's a thing, but so far there is no depression presenting. I now realize that this has been going on for more than a few days, so guessing that's why they are talking more about a psychotic disorder given the persistence of the symptoms.

PP, GL to your DD - hoping for the best for her!

[Anonymous]

I like a couple of the Facebook pages on schizophrenia, especially Team Daniel—although that medication is a last resort.

Try to get your young adult on Medicaid right away, even as secondary. The Alexandria mental health department refused my adult child who was on my private health insurance. And no one else does early episode schizophrenia in Nova, it’s all CSB, local mental health. So we had to DIY the whole schizophrenia thing during Covid.

Many mental health practitioners are not able to manage severe mental health issues. At all.

[Anonymous]

BUMP and thx to all who have shared helpful responses.

[Anonymous]

The questions I would ask your cousin:
1. Did this seem to come on quickly?
2. What was happening in the days before? Any unusual behaviors, colds, etc?
3. Did they do a spinal tap and an mri to check for inflammation in the brain and spinal fluid?

My daughter has autoimmune encephalitis. It's relatively new but its symptoms mirror many of schizophrenia. Anti-NMDA is one type of AE. There are many others and most don't have an identified antibody, so ruling it out can be tough. But I would at least do some research and mention it to the drs.

"AIE commonly presents as new onset of memory loss, psychosis, altered mental status, or seizures, with the presentation taking place over a few weeks to three months. AIE involves several parts of the nervous system, including the limbic system, the spinal cord, and/or the entire neuraxis. AIE can be confirmed by multiple modalities, including laboratory testing (antibody detection), neuroimaging, and electrophysiological studies (electroencephalogram)."

https://www.ncbi.nlm.nih.gov/books/NBK578203/#:~:text=AIE%20commonly%20presents%20as%20new,and%2For%20the%20entire%20neuraxis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don't know what she thinks you'd be able to find out what with you not being a psychologist, not being her daughter's psychologist, you not having access to any of the test results being run on her daughter, and you not being a professional psychiatric disorder researcher. Your posting on a message board to get opinions from CPA's and stay at home moms with English degrees is not going to be helpful.

Why not do what you can to encourage her to be patient and listen to the actual doctors treating her daughter and then do what they suggest? That would actually be helpful to her.

Seriously? That's what you came here to say when I ended my post that folks in this forum tend to be gentle and helpful.

FWIW, CPAs and WAHMs with English degrees may have mental illnesses or know someone who does.

The next time perhaps you should type this out, reread the original comment, then delete because you realize you have nothing to offer.

Good grief you're even worse than I initially thought. Fine, I'll be even more helpful than I already was and really spell it out for you: your niece doesn't even have a diagnosis, so people who are actual professionals can't help her, let alone strangers who don't know her. This is a waiting period, not a doing period. Don't take advice from strangers on the internet about medical issues.

DP, who actually is a mental health professional and who has treated people with psychotic illnesses: yes, actual professionals CAN help her. They can keep her calm. They can help her family stay as calm as possible. They can provide a safe place to wait to rule out substance-induced psychosis (as the OP mentioned). They can take detailed histories from folks willing to provide that information. None of those things are dependent upon a formal diagnosis.

If it’s ever helpful at some point, OP, the improved care for initial psychotic episodes is largely due to an NIMH initiative called RAISE (Recovery After an Initial Schizophrenia Episode). Sometimes family and friends find it helpful to learn more about the research used to guide treatment. Sometimes they don’t, which is fine. Just wanted to share in case it’s helpful. And I’ll +1,000 the recommendation for NAMI.

TY - also so kind to share as well as point out that there is a community out here.

You’re welcome. Your niece and your family are not alone - there is help, and hope. Sending all my very best.

[Anonymous]

Anonymous wrote:The questions I would ask your cousin:
1. Did this seem to come on quickly?
2. What was happening in the days before? Any unusual behaviors, colds, etc?
3. Did they do a spinal tap and an mri to check for inflammation in the brain and spinal fluid?

My daughter has autoimmune encephalitis. It's relatively new but its symptoms mirror many of schizophrenia. Anti-NMDA is one type of AE. There are many others and most don't have an identified antibody, so ruling it out can be tough. But I would at least do some research and mention it to the drs.

"AIE commonly presents as new onset of memory loss, psychosis, altered mental status, or seizures, with the presentation taking place over a few weeks to three months. AIE involves several parts of the nervous system, including the limbic system, the spinal cord, and/or the entire neuraxis. AIE can be confirmed by multiple modalities, including laboratory testing (antibody detection), neuroimaging, and electrophysiological studies (electroencephalogram)."

https://www.ncbi.nlm.nih.gov/books/NBK578203/#:~:text=AIE%20commonly%20presents%20as%20new,and%2For%20the%20entire%20neuraxis.

Did your DD have any symptoms for the encephalitis?

Yes, seemed to come on quickly. Cousin said her DD was a little hyper/manic in the weeks leading up but not with grandiose thoughts. Don't think she mentioned colds. Her DD doesn't have any physical ailments now or not that she is mentioning.

All best to your DD.

[Anonymous]

Anonymous wrote:I’m very sorry your family is having to deal with this. They will probably want to do a full neuropsych test to help with a diagnosis. Generally, I think the earlier they catch these disorders, the better the prognosis - you might look up first time psychosis programs. If she needs to go to residential treatment you might want to Google around to find which ones around here have the best reputation. ERs often have to just send teens to wherever there is an empty bed - try to see if you can get her in to a good one. It’s good your cousin can talk to you, these situations can be so isolating. You’re doing great helping her out by researching for her.

curious on why you suggest neuropsych. my ds has done them and we learned about his ADHD, but cousin has never mentioned this for her dd.

[Anonymous]

I haven’t found a neurologist in Nova willing to test for other causes of schizophrenia. Pretty much receptionists all refuse the appointment. Where are you getting diagnosed with other causes? I’d love a referral!

[Anonymous]

Anonymous wrote:I haven’t found a neurologist in Nova willing to test for other causes of schizophrenia. Pretty much receptionists all refuse the appointment. Where are you getting diagnosed with other causes? I’d love a referral!

OP here. I'm not in NoVA, but GL to you. Have you considered trying offices in DC/MD?

[Anonymous]

Anonymous wrote:

Anonymous wrote:The questions I would ask your cousin:
1. Did this seem to come on quickly?
2. What was happening in the days before? Any unusual behaviors, colds, etc?
3. Did they do a spinal tap and an mri to check for inflammation in the brain and spinal fluid?

My daughter has autoimmune encephalitis. It's relatively new but its symptoms mirror many of schizophrenia. Anti-NMDA is one type of AE. There are many others and most don't have an identified antibody, so ruling it out can be tough. But I would at least do some research and mention it to the drs.

"AIE commonly presents as new onset of memory loss, psychosis, altered mental status, or seizures, with the presentation taking place over a few weeks to three months. AIE involves several parts of the nervous system, including the limbic system, the spinal cord, and/or the entire neuraxis. AIE can be confirmed by multiple modalities, including laboratory testing (antibody detection), neuroimaging, and electrophysiological studies (electroencephalogram)."

https://www.ncbi.nlm.nih.gov/books/NBK578203/#:~:text=AIE%20commonly%20presents%20as%20new,and%2For%20the%20entire%20neuraxis.

Did your DD have any symptoms for the encephalitis?

Yes, seemed to come on quickly. Cousin said her DD was a little hyper/manic in the weeks leading up but not with grandiose thoughts. Don't think she mentioned colds. Her DD doesn't have any physical ailments now or not that she is mentioning.

All best to your DD.

She had mania and hallucinations a few weeks before. And irritability. And was sleeping poorly.
At the very least, your sister should request either an mri or catscan to check for brain inflammation and/or a spinal tap to see if there are signs of infection or inflammation, ESPECIALLY if this is her first episode. I believe someone posted this link earlier, but please forward it to your sister. https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/

[Anonymous]

Anonymous wrote:I haven’t found a neurologist in Nova willing to test for other causes of schizophrenia. Pretty much receptionists all refuse the appointment. Where are you getting diagnosed with other causes? I’d love a referral!

Try Georgetown or Children's. And send them this article: https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/

[Anonymous]

Do you know why they’re thinking schizophrenia vs bipolar?

[Anonymous]

If this came on over the course of weeks definitely needs anti-nmda receptor (and other autoimmune encephalitis) work up. The typical course for schizophrenia is more indolent, though bipolar can certainly present as he emergence of mania seemingly out of the blue. Is there a family history of bipolar or schizophrenia?

[Anonymous]

Anonymous wrote:If this came on over the course of weeks definitely needs anti-nmda receptor (and other autoimmune encephalitis) work up. The typical course for schizophrenia is more indolent, though bipolar can certainly present as he emergence of mania seemingly out of the blue. Is there a family history of bipolar or schizophrenia?

According to cousin, came on over a weekend with no real indicators. What do you mean by indolent regarding schizophrenia?

Family history of depression, maybe some hypomania, but no meds for that (only for the depression).