D newly diagnosed with Schizoaffective Disorder with Depression - keep fishing or cut bait?

Parents Forum
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I’ll see if I can make this shortish but I’m kinda long winded soooo…

D started as a computer engineering major and was doing well. She enjoyed her classes, easily made friends, which was amazing as she was kind of a loner in HS, had a couple of academic hiccups but recovered from them and other than dealing with her known issue of ADHD, and disinterest in getting a job, was pretty typical for a student in the engineering dept.of her school. Then, she got a boyfriend who ended up sexually assaulting her and in a nutshell she developed PTSD.

The rape and PTSD affected her academically and socially and she became withdrawn, depressed, unable to focus on schoolwork, or even make it to class sometimes. Then she started having hallucinations and had “spells” where she would lose the ability to use her legs, she would fall and not be able to get up. She dropped out of school to attend to her health last spring . Her neurologist had her do a sleep study, an extended sleep study, an MRI to rule out epilepsy, narcolepsy, MS etc. After all that, she finally got in to see a psychiatric nurse practitioner, psychiatrists are in short supply where we live and she was on a waiting list. The psych NP diagnosed her with Bi-Polar Disorder, and put her on medication. She seemed to be doing better, and actually moved out to live with friends in anticipation of going back to school in the fall, which she did. She started off with 5 classes, failed one, took one as a non-credit and did well on the other 3, one of which was a lab. If she was her “normal” self, she would have aced the class she failed and she would have taken the other for credit and probably earned at least a B. She is/was a solid B+ student.

This year, she did a partial hospitalization where they updated her diagnosis to Schizoaffective disorder w/depression so she has been getting meds for hallucinations/delusions, tweaking them with her anti-depressant meds, dealing with the side effects, emotional fallout from therapy etc. She started the spring semester of this year with a full course load because she thought she was more stable than she actually was. Dropped two of her classes along with the labs and kept 2 classes. In that time she decided to change her major to computer science as she only has about 5-6 classes to go to complete that degree. Now, she has dropped all classes to take care of her health again. We are totally on board with that as her health comes first but the question H and I are struggling with is: Is it worth it to even have her continue her education? Will she ever be stable? Or in remission? We don’t know the prognosis. She’s taken out student loans to help pay for her education and we worry that she won’t be able to hold a job to pay them back. The school sent the money back to the gov’t last year and will do so this year as well. Meanwhile we are also throwing money at something that will take much longer than we anticipated, and we have another one to put through college. I hate to bring money into the equation but it’s part of the reality and is really the crux of our dilemma. We don’t have unlimited funds. She is still living with friends and frankly it’s better for her than living at home because we are very isolated and she really needs the social interaction but she doesn’t drive. Her rent isn’t that much and for now, we can afford it.

We all know that the most important thing is her mental health, she wants to take the rest of the semester and summer to get the meds right and make further progress in therapy and hold down a McJob. She also wants to volunteer at the SPCA. So she has a plan, which includes finishing her degree, but will she even be able work in her field? My crystal ball is broken so I’m kind of at sea right now. I know about NAMI but I don’t know if they deal with these sorts of questions. I just don’t know where to start. If I knew of other people that were able to finish their CS degree and hold down a job in that field, I would feel much better about advising her to continue to try for that degree. Hubby wants to get her into some sort of assisted group housing situation and supported employment but her therapist says that she is nowhere near needing that kind of support and is confident that D will be able to finish her degree. I guess I am looking for guidance, advice, what would you do? etc.

Wow, this post was way longer than I intended but thanks for getting this far, I appreciate it.

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I am not an expert on mental health disorders nor do I know your daughter, but from what you describe, I agree with the therapist, not your husband, as to your daughter’s prospects and potential. Focusing on her health is the most important thing but I’ll bet that eventually she can go back to college, graduate, get a job, and thrive. It’s great that you and your husband are supportive parents. Best wishes with this challenging situation.

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I’m so sorry, that is s lot to handle and I completely understand the financial and job concerns. Does she have an option to finish PT? Have you talked to the college’s student support services?

It sounds like she is close to finishing? If she could take 2 classes at a time, would she be less stressed? Since she’s so close, it would seem best if she can finish because a degree will help her in whatever job she gets.

I hope someone with more experience can answer. I had a college roommate who was diagnosed bipolar when in school. It was very tough because we didn’t understand what was happening.

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Wow! Hugs to you and your family. It seems like IF your daughter can get truly stable then with only 5 to 6 classes left to finish her degree that she has a good shot of doing so. It doesn’t sound like going to college full time has been working though. As far as being able to live on her own or hold down a job after graduating, that will also require stability. There will probably be ups and downs, but there are people out there with major mental illness that do function.

There are a number or parents on this site who have adult kids with major mental illnesses, @MaineLonghorn among them, who can probably steer you in the right direction.

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OP, my son was diagnosed with schizoaffective disorder as a biomedical engineering freshman. I’m out right now but I will PM you later. I’d be glad to talk to you. It’s been more than a six-year journey for us.

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@morkatmom First, big hugs to you and your daughter. Your daughter has lived through an awful experience. I am not in the mental health field so I will tell you what I can as a Mom and someone who had a family member with a rare neurological condition. First, based on what you have said, she can graduate. Even if you have to move on campus with her and go to classes and take notes, she can do it. I second the other suggestion of her going part time. Even taking a class per semester will work. Or online or in the Summer. All are options. It might also be good to explore the difficulty of the class beforehand with a faculty advisor. She has entered new territory and will need supporters (you and anyone else at the school can help, even a sympathetic professor). People will help if they know what is going on. I would not let the diagnosis drive all of the decisions. ( At the same time, I would have 150% empathy with her, she is fragile and needs love above all).

Next, the mental illness. As a mom, I would get an appointment with a psychiatrist or whomever is needed outside of school. I realize there may not be much availability. Healthcare providers love to show you nurse practitioner and bill you the same. I would call frequently to see if someone has canceled an appointment. The reason I said outside of school is that an in school doctor may have very different objectives which may/may not be best for your daughter. Keep looking til you find a good fit.

Next, I would find a therapist who specializes in women who have been raped. Based on your post, the issues started there. I would also think about medications. Personally, I am in favor of medications when a disease has been identified but not in favor to mask symptoms or figure things out. ( Again, I have no experience with or expertise in mental health issues where medications’ effects are less well known. In my own experience , the specialist will try to fix that part of you that they specialize in and nothing more. It’s almost impossible to find a doctor who looks at the whole person. If you find one, use him/her to help your daughter get well. Listen to the doctor who treats the whole person.

I wish you all the best as you struggle through this tough time. Take care of yourself. I almost lost my own strength during a family health crisis. Remember it takes time. Lean on your husband and friends. Have coffee with friends who care. Take a walk. By yourself. With your daughter.
And lastly, if your daughter is at all creative. She might try art therapy, or writing or ceramics. Sometimes art and music can tie the broken pieces of the soul back together.

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First question that comes to mind is, does the school itself remind her of what happened? If so you might look into doing as much online or at home as possible with minimum exposure to campus. She needs a good doc that she can relate to and a good therapist. Mostly some time off of school to reduce pressure and time to get herself back on the right track. With the right combination of meds, taking the meds (not unusual for people to stop taking them), a support system and learning to tell when meds need to be tweaked, she can become stable.

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@morkatmom, I’m sending you positive thoughts. People can and do get better and have good lives in spite of mental illness, including finishing college and holding down meaningful work (at an understanding workplace), albeit with some interruptions. All the above advice seems good. I’d also encourage you to try NAMI again. Their groups for family members can be a consistent source of support for you. Maintaining mental health can be a long journey, with lots of ups and downs… We have mental illness in my family too and my D (who starts college next fall) has depression and anxiety and learning disabilities. We plan to get her connected to counseling first thing as she gets settled in there and to continue medication + work with the office for disabilities to have accommodations in place just in case. We choose a college known for strong support services. She will be far away, but has other family and friends in the area… Anyway, I do understand and wish you all well!

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I will PM you. She is close to finishing college and should do so at whatever pace works. My main concern is that she has not been properly evaluated. An MRI or even a week long EEG cannot rule out epilepsy , particularly temporal lobe/ partial. Obviously I don’t know details of her diagnosis but I do know kids personally whose treatment has been down the psychiatric path when the problem is neurological. The reason this matters, of course, is med choices. If it is indeed. Bipolar or schizoaffective she can learn to manage it and do well: check out the books of Lynn Redfiekd Jamison.

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^Wow, good points, compmom. Our middle son was given one of those EEGs to rule out other medical issues. I forgot about that. His test was negative, but you’re right that it’s important to consider neurological issues.

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A doctor friend recommends getting an evaluation at a teaching hospital in cases like these. They treat the patient as a whole.

Life isn’t a sprint to the finish. Hugs.

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The advice about continuing to seek diagnosis and help is an excellent one while she is still struggling.

That said, is she continuing to take out loans while this is going on? I would definitely want her to continue with her degree one step at a time. Especially since her therapist thinks it’s a good idea. But I’d want to be in a position to do it slowly, on the cheap, with support. She’s had 2 consecutive semesters with dropped classes and issues right? With another kid coming up, I would be worried about the money too and look at any and all possible options to make sure she can progress slowly while not accruing more debt or having you as the parents have to produce money on the fly. I might talk with her frankly about the monetary concerns. I would personally be very uncomfortable throwing money at the school while she is away from home and you can’t see first hand how she is doing day to day. When mental illness is in the early stages of being managed, it can be really hard for the patient to be subjective about their progress and symptoms. Going full time doesn’t seem like a fit right now. Unfortunately, I know this from experience. I do think NAMI could be a good source of support for you.

Is she planning on coming home for the summer where you can kind of see and manage first hand what is going on?

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OP - hugs to you!

Wish I had more specific info, but the neuro issue mentioned above reminded me of an NPR article I just read this morning: https://www.npr.org/sections/health-shots/2018/03/31/598236622/the-neuroscientist-who-lost-her-mind-returns-from-madness.

Hang in there - praying for clarity and wisdom for you.

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Unfortunately teaching hospitals often rely a lot on EEG’s ( a week in the hospital in bed, with head covered by electrodes_. Very often a person with true epilepsy will not experience seizures in the hospital, because this just doesn’t replicate real life, especially stressful parts of real life like academics. And, again, temporal lobe aka simple or complex partial won’t show up, nor will “complicated migraines” (which can cause paralysis) Both migraines and temporal lobe epilepsy can cause hallucinations, visual and smell and sound, and can cause a lot of other, frankly, weird stuff.

I would suggest a neuro specializing in females with migraines and epilepsy, and yes, a teaching hospital would be best but just be careful. Some deal with temporal lobe/complex partial etc. A functional medicine doc can be helpful as well, but don’t let them use any supplements with neurotransmitters.

Teaching hospitals often won’t diagnose officially without some kind of test to document a disorder, but there are docs who will tell you yes this might be such and such but we cannot document it as such. And the prescribe for that suggested disorder.

A drug like Lamictal is used for migraines, epilepsy and bipolar and is both an anticonvulsant and a mood stabilizer. It does not have the side effects of antipsychotics.

There are many ways to finish school, and plenty of time.

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I don’t know anything about mental illness but wanted to recommend a book I just read: My Lovely Wife is in the Psych Ward. It is a memoir about exactly what the title says. I think you would find it encouraging, and there are a lot of parallels to your situation.

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Along the same line of thought. I have a friend whose mother suffered from mental illness her entire life. She was diagnosed with a lithium imbalance and suffered all kinds of stuff - depression, bipolar, etc. A few years ago, now in her 80s, she started acting strangely. Due to her history, the psychiatrist assumed it was caused by her mental illness. Turns out she had a huge brain tumor which ended up being inoperable.

Definitely pursue potential physical issues along with the behavioral ones.

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Autoimmune issues can also cause apparent psychosis. And Lyme. An ANA test for starters would test for autoimmune (see the book Brain on Fire), and a Western Blot (NOT the Elisa) for Lyme. Seizuresand/or psychosis can be related to things like lupus, in some instances.

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Many of her symptoms sound like she may have developed CIRS. You can PM me if you like. Mary Ackerley is a psychiatrist who gets it.

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@morkatmom: I’ve sent you a PM.