It’s been one year since my daughter had her first psychotic break. The experience has left me heartbroken and exhausted. In that time she lost her job, spent all of her savings, totaled a vehicle, been involuntarily hospitalized once, voluntarily hospitalized once, arrested twice, held in jail for five months and is currently on house arrest. Luckily she is court ordered to participate in counseling and has been taking her medication. The court drug tests her weekly. I’m not sure how they verify she’s taking her medication, but hopefully they do.
She’s over 18 so my husband and I only have access to the information that she chooses to share with us. I really wish she would agree to give us access to her doctors. I feel like she doesn’t fully understand what’s going on and needs someone to advocate for her.
She hasn’t had a consistent medical team. Everyone she’s seen seems to have a different opinion on what’s going on with her. We’ve been told she’s likely bipolar, it was a drug induced psychosis, schizophrenia, back to bipolar and most recently major depression and anxiety. Is it normal for the diagnosis to change so many times?
She’s been on medication consistently for almost six months now. Her personality isn’t the same as before this started, but she is stable. I worry what will happen if/when her current team changes her medication. In my heart i know it’s more than depression. Depression and anxiety would not explain all of the things she did when she psychotic.
Does anyone have any advice on navigating changing diagnoses and medications?
I think she needs to be seeing a single psychiatrist on an ongoing basis. If you can afford it, you might want to pay out of pocket for it. My son’s psychiatrist does not take insurance, so we’re doing that anyway, He sees the person once a month because he’s stable, but it has been as frequent as 1x a week during an episode, which thankfully hasn’t happened in 2 years. His diagnosis was bipolar for many years, then it morphed into schizoaffective before becoming flat-out schizophrenia. But whatever it was, it stayed constant for years.
Unfortunately, mental illnesses don’t have clearly drawn lines and our family members can present differently at different times. An inconsistent medical team could easily see various symptoms and come to various conclusions in those snapshot appointments.
My son’s first diagnosis was at an (employer requested) mental health clinic. They had him there for 8 hours and told him he had major depressive disorder.
When our Family to Family teacher convinced my husband and me to go to a psychiatrist who specialized in severe mental illness, the doctor actually crumpled up the paper from the mental health clinic when we showed it to him.
I’m sure my son didn’t show all of his symptoms in that 8 hour clinic visit. He probably did present as depressed, his employer was threatening his job. Our input as parents is important to helping the doctors obtain a more correct diagnosis. We see more of the complete picture of symptoms.
Have you faxed or emailed your daughter’s doctors with your observations and concerns? Even if they aren’t allowed to respond to you, they can read and place your communications in her record.
They will value your observations. Keep your communications brief and ask that they not be shared with your daughter.
@caregiver1 @hope Thanks so much for your responses. I’m very grateful that i found this forum. The support everyone offers keeps me from feeling completely alone.
The inconsistent medical team is due to my daughter’s lack of cooperation. Currently she is court ordered to participate in counseling. I’m hoping that she will finally stick with this office. I am going to try to summarize our observations and concerns and fax them to their office. I will make sure to request that they keep my fax confidential.
Another thought is that even if the diagnosis changes, there are often some of the same symptoms present. While an accurate diagnosis, if possible, is helpful, treating the symptoms is most important. I encourage you to do what you can to keep or gain her trust. At a “good” moment, she may be willing to sign a POA or similar document. Also being used these days is a PAD, Psychiatric Advance Directive, which is also a legal document, which would at least identify her preferences for treatment, medical professionals, and other resources.
I’ll add to what’s been said:
A few psychiatrists have leveled with me and said the lines between diagnoses are medically coded differently for insurance and other reasons. They know certain insurance companies may pay differently or question certain diagnoses and that they have individual biases toward certain diagnoses. They respond more to their own observations, medication history and reports of current symptoms than anything else, because they are primarily psychopharmacologists. I don’t recall any even asking for previous psychiatrists medical records.
Since you mentioned drug-induced psychosis, illicit drug use also clouds diagnoses and could explain the drug testing which is fairly universal for most people with drug histories and pre trial or probationary monitoring. Unless there’s been some advances in development of tests for psychiatric drugs beyond lithium and a few others, I’m skeptical that psychiatric medication compliance is being monitored. Hard to say without knowing what medications she’s taking, but in the case of lithium treatment for bipolar disorder, levels are commonly monitored because of potential toxicity.