Ask your daughter to sign a release giving your permission to speak to her treating doctors (if she is comfortable with that).
Thank you for the suggestions to keep good notes. I’m going to write down a summary of the comments made by her manager when I called for more information about the incident. My DD has a completely different recollection of what happened so it is impossible for her to accurately explain why she was hospitalized. She can be very convincing so I’m glad I sat with her the whole time in the ER and witnessed her behavior first hand. Our insurer, Kaiser, has not offered an intensive outpatient treatment program. They have an excellent addiction medicine program but no similar treatment strategy for psychiatric emergencies, at least not in our area. She has been offered one appointment with a random psychiatrist within 7 days- not the one she has been seeing for 2 years- and one visit with a random therapist within 2 weeks.
I was planning to seek treatment out-of-pocket when I learned (after an all night googling session) that UCLA offers a free after care program for newly diagnosed psychosis. It is part of a larger study comparing the effects of exercise and cognitive skills building computer games on recovery. They are also comparing oral and injectable forms of the standard medication. As part of the study she would undergo extensive testing, meet weekly with a psychiatrist and receive follow up care for 3 years. It’s a 1-2 hour drive for us each week but that is a minor inconvenience considering what is at stake. She’ll have the interview on Monday. Looking back at her history she has almost every single warning sign for schizophrenia, she is even left handed. The only thing missing is family history of the disease. We have a pattern of minimizing her symptoms and have been in denial for quite a long time, so we need to assume the worst in order to maintain momentum to seek aggressive treatment.
We have yet to speak to any doctor involved in her care, they are too busy to return calls. The social workers have been excellent, but this board has been the biggest help. Thank you so much for your prayers and shared stories.
So glad you found the UCLA study. That sounds very promising. Glad you are taking notes as it sounds like you will have to be the accurate reporter and notes will help you be as factual as possible. I’m sure this is a very difficult time and notes will also help you keep track of time and details that will otherwise blur.
I agree that driving 1-2 hours while not ideal is do-able. A good thing about clinical trials is that medical care is provided at no charge and tends to be excellent.
Hi, @momsquad . How are you and your daughter doing?
Yes, I’ve been thinking about you. You are certainly not alone. I am in a closed Facebook group for parents of kids wtih schizophrenia, and we get multiple new members every day. I’m so glad you found this thread!
We had the interview today for the clinical trial, conducted by a PhD student. Almost 2 hours of questions about symptoms and the circumstances that brought us there. For the first time I heard my daughter recount her version of the events that landed her in the hospital. It was surreal to hear her calmly provide details of her irrational behavior, then attribute the odd behavior to her coworkers. She still doesn’t understand that she is ill, though it is starting to dawn on her that everyone else thinks she is ill.
The saddest part of the interview was when he asked how she felt about the future. She said she had planned on becoming a counselor but realized she may be considered unfit for that now. The interviewer did not provide much feedback, but he did say we would probably not be able to apply for disability status until she has a second hospitalization. Thank goodness the insurance coverage to age 26 appears to be safe.
We will find out next week if she will be asked to participate in the trial. She seems content at home now in a stress free environment and I’m comfortable leaving her home alone for half the day while I work. I am glad she was living at home when this happened, can’t imagine the added stress of traveling to care for her.
We had to get D declared a disabled dependent since her health continues to make it impossible to have reliable stamina. We were fortunate she could remain on the family plan until applying for disabled dependent insurance status. It too many more months than D or I had anticipated so I’d recommend you start sooner than later with the paperwork.
Save all the paperwork and keep a good file of everything. Take good notes so you can see the current and recent status and changes.
Good luck–I hope your D is selected for the clinical trial. I’m glad you can leave your D for 1/2 a day when you work and it’s great she’s living at home and has your and family support.
It sure sounds like you’re doing everything you can at this point. I’m so glad you found out about the study - none of the ones I’ve heard about up here have been right for my son. Your post reminds me that I should look again, though.
I’ve asked my son’s doctor about sending him down to Boston for treatment, but he said that honestly, there’s nothing more they could do for him there than we can locally. This man has been so helpful that I trust his opinion.
Gotta love the system. I got a letter for my son on March 9, stating that he needed to call in for a phone interview to verify benefits by March 7! Uh, that’s a problem. The postmark was dated March 7. My son’s case manager called in the next morning, but the recording said the wait time would be about three HOURS!! Then I got TWO letters, postmarked March 8 and March 9, telling my son he was in danger of losing benefits since he missed the phone interview. The case manager is going to take my son down to the DHHS office on Wednesday. I imagine there won’t be a problem, but any kind of stress is hard on my son. Those doofuses!!
Stress is hard on everyone, especially when the bureaucracy creates unneeded time urgency and makes everyone jump!
Wow that is awful ML. These agencies are supposed to be helping families deal with hardship, not erecting obstacles. Did the in-person office visit solve the issue?
Tomorrow I begin the first of a 12 week NAMI course and hope to learn from other parents dealing with this. It is ironic that the course will be held at our HMO office building. My DD finally had her first visit with a therapist and still has not been evaluated by her psychiatrist, though he did speak to me by phone. Therapist visits are every 2 months and she can attend a 3 day a week group sessions. Still on hold for the clinical trial, hopefully we find out this week.
@momsquad, I’m so glad you signed up for the course! I just finished three days of training to become an instructor for that class. It’s challenging, because I will be responsible to find a venue and advertise the course. Office buildings are good because they’re usually free! There’s no money in the budget for venue rental.
Let me know what you think of the course, and if it helped you. I can tell you that a LOT of thought went into developing it. They know that family members registering for the class have been through a lot of trauma, so they approach teaching in a different manner from traditional adult ed classes. Everything is done with a purpose, so even if something seems odd, there’s a reason for it.
Wow therapist sessions only once every two months seems like a LONG time between visits, especially if issues develop between sessions. Sure hope they have contingency plans for this.
^Good point. And be prepared for your daughter not to like the group sessions. They can be tough for ill people to handle. My son refuses to go back to any of them.
I’m hoping the NAMI peer to peer group, which starts in 2 weeks, appeals to her. For now we just have to take what we can get. It’s disheartening to learn the disparity in treatment options throughout the country and world. Great Britain and Australia have some integrated care plans for first episode psychosis. A large US government study outlines the best care plan with evidence based practices but it is not widely available. I sent the link my daughter’s psychiatriist so he knows why I’ve been complaining about her care. Kaiser just does not spend enough on mental health care, and they’ve been sued successfully in northern CA. Here’s the link to the NIMH study:
https://www.nimh.nih.gov/health/topics/schizophrenia/raise/index.shtml?utm_source=rss_readers&utm_medium=rss&utm_campaign=rss_full
@momsquad, that study looks great. I’m happy she’ll be looked at by people familiar with early-diagnosed cases. They’ll be up on the latest research and be able to help her the most. 
Portland, Maine has an early intervention study going. I contacted the doctor involved with it and he recommended the awesome doctor that we’ve had for almost six years now. It’s just crucial to get a good psychiatrist who’s willing to work with the family to improve things for the ill person.
My son’s case manager took him down to the state office on Wednesday and they didn’t even have to wait to see someone. The state verified that he’s still eligible for food stamps - he gets $43 a month in them, whoo hoo! But he’s so frugal that between that and food pantry trips, he doesn’t have to spend much of his own money.
@MaineLonghorn–sounds like your son has a good, proactive case manager. What a relief for you and him that she can help him navigate the system and keep stress down!
@HImom, yes, it is nice. But the governor of Maine is cutting reimbursement rates for services such as case management, so I’m nervous. So shortsighted. 
Yes, many times budget cuts are short-sighted but your S is fortunate to have you as part of his safety net. Many do not have an advocate in their corner, tho it is tiring to be that voice, it is invaluable.
Our kids have never received any services to help them–it has just been me and what medical providers we mustered. It is tough dealing with any chronic health issue–I’m sure mental health issues are especially treacherous.
I got paperwork from SS today for my son’s periodic review. I’m sticking it in an envelope and mailing it to him. I told him his case manager can help him fill it out. That’s a big step for me, not doing it all myself!