Family and Caregiver Schizophrenia Discussion Forum

Possible diagnosis


#1

Last summer our 17 year old daughter came to us after working at the Word of Life camp that she needed professional help with some very strong emotional problems she has been dealing with for several years. She has been experiencing mood swings, panic attacks, and hearing voices in her mind telling her a lot of negative things about herself. I looked for a Christian counselor on the Psychology Today website and found a good counselor with expertise working with teens. The counselor we found has been a blessing for our daughter and has helped up many ways, giving her some helpful coping skills.

The counselor adviced us to do a series of tests such as MRI to rule out any physical cause of the isssues she is dealing with. Now we are at point where both the counselor and the doctor is suggesting we set up an appointment with a psychiatrist for a possibility of diagnosis of either bipolar or schizophrenia. Our daughter was at first terrified at this… even though she knew it was a possibility… it was thought of having a “label” and the she heard some “horror stories” of the effects of the medication.

The counselor suggests that schizophrenia is more likely. My daughter is starting to accept the idea of getting the diagnosis now.

It is all so overwhelming for my wife and I and sometimes I don’t know how to process this possibility.


#2

Welcome to the forum and, at the same time, please let me express my sorrow that your current family situation has you researching schizophrenia.

For some of us it takes a long time to understand our family member is suffering from a brain disorder and for others its a shorter journey. Either way, when the doctors mention scz, it can feel like a ton of bricks has been downloaded right on top of a parent. Sometimes the more you read, the heavier the bricks seem to feel. I am sorry.

You have a bright spot here that is a really bright spot, your daughter is aware that something isn’t right. Only 40% of our family members are aware that they are suffering from a brain disorder. The other 60% suffer from the symptom anosognosia and are unable to understand their brain is malfunctioning. Since she has awareness, if she should have scz, she might be more willing to take meds.

The future can look bleak, but your daughter’s future may be quite excellent. Some of our family members get on medications and have wonderful results. If she is diagnosed with scz, I hope you can get her focused on the possibility of the meds making her life easier.

If you can, process the possibility in small pieces. Its important to remember that the most difficult challenge for you and your wife may be that the two of you will be at different levels of understanding as you work toward accepting the diagnosis.

There are some wonderful people on this forum who represent a broad spectrum of experience. NAMI holds a free class called Family to Family that you should try to attend with your wife - its an excellent resource for information. Contact your local NAMI group to get on the list for a future class.

One of the things they teach at Family to Family is to learn to brainstorm problems. If you toss out a question here on the forum, people may reply in different ways. Some of the suggestions might not seem to apply to your situation, other suggestions you may see as workable.

Take care, Hope


#3

Hi @Windyhill63 - Sorry for the reason you are here. Yes, it’s a very big piece of information to swallow. Hope’s analogy to the bricks is pretty right on. You are very lucky that you daughter sounds med compliant. One thing that I find helped me and my son is to talk about the symptoms and not the label. His doctor will use phrases - it’s probably not a good idea with your condition. I have used things like well - the doctor said you have some disorganized thinking and anxiety. Instead of saying you have schizophrenia. My son (to give you some hope) was in full psychosis for a few years with a lot of delusional thinking for years prior to that. He is on a monthly shot (Invega Sustenna) and is back to “normal” more or less. He is working and is comfortable in the world. Before he was super paranoid of his bosses, his customers were telling him to kill himself, he thought people were out to steal his body organs, the cia were listening in on his phone, drones were following him. Anyway, he’ll be on that for a year and then he says he’ll go off as he doesn’t think he is ill.

This is a great forum for you for information. As Hope also mentioned a great place for brainstorming and support.


#4

Unfortunately, the nearest NAMI chapter is 90 minutes away as far as I could tell from their website


#5

@Windyhill63 - I’ve done it without Nami. This group has really helped me a ton. I think Nami only meet here once or twice a year where I live. You can still get a lot of Nami support here as others will share what they learned at the classes.


#6

Welcome to the forum, good for you for posting and listening and researching for your daughter.

From my own personal experience, I found that a psychiatrist would not diagnose sz until my daughter had been suffering from it, under his watch, for over 6 months. With her, It didn’t matter her diagnosis so much as that she won’t admit to being ill. She has no idea anything is off with her, even though it is VERY obvious to everyone else. It is so very hard and doubly heartbreaking to deal with anosognosia AND schizophrenia. I know with certainty that med-compliance could give my daughter a life back, but she has no idea that the haldol/trileptal combination handled her symptoms almost 100% during and after her last hospitalization. She is not sick in her opinion, so will not seek a doctor or medication. She is 34 and became noticeably ill 2.5 years ago after 12 years of adult independent life.

If your daughter has some insight, that will help tremendously for her move ahead in life. Untreated sz can be very debilitating causing withdrawal from the “real” world, into an isolated life. I urge you to help her on this journey, scary as it is, as quickly as you can, as response to early intervention with medication, per what I’ve learned, can give the best recovery.


#7

Hello, I am sorry you are going through this difficult time of learning your daughter’s possible diagnosis.

If she does receive a schizophrenia or other psychosis spectrum diagnosis, there is a wide range of prognoses and outcomes. For the majority of people, the illness is manageable with medical treatment and psychosocial supports.

Mental illness is medical illness and whenever parents learn our children are severely ill, it’s profoundly difficult for us. I hope you find good doctors. If she does have a psychosis spectrum diagnosis, please let us know and we will share some resources on this thread that are shared elsewhere on the forum.

Take it one day, or even one hour at a time. Since your family has a faith community, I am hoping that prayer is a deep comfort.


#8

It is good that she has been somewhat open with us about what she is dealing with.


#9

Hello to all on this forum.
I just went through the process with my mom,
the neurologist wanted to make sure mom is not suffering from a brain tumor or anurisum or stoke to the brain. At first I was “this is ridiculously, unnecessary”, then my wonderful husband said “this is the way to eliminate any brain issues” dimentia or mental illness. My mom also suffers from anosignosia, even though the docs all say my mom’s illness is dimentia, my hubby and I both know she has been this way for over 20 years!
Which brings me to our sons condition, even though he was in an auto accident, I believe he was suffering from mental illness (this is my opinion, not others in my family,) Lou was in an accident which led to an assualt, between the two, I was with Lou through both (which he currently is serving a forensic commitment) he said some very unusual things, which led me to believe he was MI before his accident. Again, this is my perception, so in conlusion, I believe my famly lineage has a MI problem.
Take care, AnnieNorCal


#10

Yes, that is very good. Even though she didn’t tell you right away, but suffered alone for a while, the fact that she recognized her own problems and was able to tell you is a really big sign to me that she will be able to conquer much more than she could otherwise had she remained silent until she was over 18.

So much is limited for you as her parents once she is of age, she could refuse to let you in on any treatment recommendations, and there would be nothing you could do about it. Medication and diagnoses are scary prospects to all of you now, but it would be much more scary if she should become an adult after refusing treatment while in your care, and cave in mentally as has happened to many of our children.

I hope that you will continue to work as a team to help her diagnose and overcome whatever it is that ails her, and that she will sign papers allowing you to continue to know of her treatment and condition after she is 18. The legal stops to helping an ill family member who does’t allow you to be involved are enormously hard to overcome.


#11

Hi, I am truly sorry for what you are going through. I feel it is a huge advantage that your daughter is open with you and is seeking your support.

Just a few months ago I connected the dots of what is really happening with my sister (& undiagnosed brother), they are in their 30s… they came to me and mom when they were very young and told us of auditory and visual hallucinations, some were religious so we (unfortunately very ignorantly) just thought it might be related to what they were reading/learning/or fearing etc especially it was I think around the time we moved to a big house (some kids were joking was haunted as it was empty years before we moved to it), so it was another reason we thought they were scared of new environment etc… since then, a series of odd behaviors and isolation in room started and more sleep, social awkwardness etc and again we attributed that to “being a teenager”… it continued through out college and wanting to drop out (both sister & brother!) and one of them managed to get the degree but with great great difficulty and they could not hold jobs. My sister got an official diagnosis late in her illness and moved back with family but faced more trauma from some family members who did not understand her illness and treated her very harshly then she started refusing to communicate/be medicated/move with me or seek help due to what I perceive now as anosognosia (lack of insight) and alogia (poverty of speech)…

It hurts to think of the past and hard not to imagine what a better future they would’ve had if there was early diagnosis, early support, early love and care…


#12

At first she said that she is “managing” without medication. One thing we have been encouraging her with is that medication can help her keep balance and her counselor has tried to tell her that even though she is making progress with counseling, medication might just make it that much easier.


#13

We had to drive a little more than that to take Family to Family classes. Luckily they were on Sunday afternoons so we could make the drive there and back. 12 sessions in all and each session is several hours. The classes are free and some NAMI groups provide meals. Our class members took turns bringing the snacks.

My husband and I usually had dinner out on the way home. Each class usually had us a little silent afterwards and needing time to absorb before heading home to our son.

Family to Family is for all family members, parents, siblings, children, grandparents. Often the class is offered simultaneously with Peer to Peer. Peer to Peer would be for your daughter - whether the diagnosis turns out to be bipolar or scz.


#14

An additional thought here…
My daughter often talks about what she calls her “Mind Palace”. It seems to be a “place” she goes to in her mind, where she interacts with characters from stories that she writes. But I am not sure if this is a place she retreats to when things get stressful or if it is just her creative mind at work coming up with new ideas for her to write about… she often talks about the characters in the Mind Palace as if they are real… I can sometimes tell when she is in her “Mind Palace”, because she becomes very quiet and her head is bowed down. She describes it as a very vivid daydream. The last time I observed this was a time I was bringing her home from school while my other daughter was staying around for basketball practice. School is very stressful for her so I wondered if there was a connection between that and her “Mind Palace”


#15

Ok, I did find a closer NAMI group, but the day isn’t really convinient


#16

@Windyhill63
Your daughters’ anxiousness about diagnosis is understandable. I think my brother felt the same way about wearing a label with so much negative stigma.
But early diagnosis and early treatment can and will ensure that a disorder does not ruin her life.
It’s a really good thing that she is so in tune with what’s happening in her mind and has people she can trust to talk to about it.
Trust that getting a diagnosis is the first major step toward maintaining her hope for a happy and fulfilled life!


#18

Once diagnosis is made it would be difficult to get rid of it. I recommend to see several different psycs before going further. Does she have a family history of sz? Did she use illicit drugs that can affect brain development? What is the nature of her emotional distress. Maybe she is just stressed and needs some drugs to help her with stress before using big guns for sz.


#19

School is definitely stressful for her and a challenge for her, but she manages… both of my daughters go to the same Christian school that my wife teaches at.


#20

She has had some traumatic experiences a few years ago


#21

I am not sure of any family history specifically for so, but there has been some level of mental disorder… I have ADD, but I sometimes wonder if there is something more because of other factors… and my wife has an aunt that has ocd and bd.

One thing I forgot to mention earlier is that I now have a list of psychiatrists that are covered by my health insurance PPO plan.