Possible misdiagnosed?


#1

My son is a healthy, smart 19 year old. At the end of his first year of college he dropped a bombshell on us. He told us he was hearing voices. Not only that but he has been having this issue for 2 years (senior year of hs and freshman in college). They were putting him down and saying he was a failure, but not telling him to hurt others or himself. I had noticed a change in him over the course of his college freshman year and always asked him if everything was ok. He graduated from high school as a valedictorian with a GPA of 4.34, and his College freshman GPA dropped to a 1.9. He has always been a very confident child with a giant dose of ego to go with it. I have always considered him my strongest (mentally and physically) child. He was his high school football and track star as well as popular . When I took him to our family dr to discuss these things and get him help I expected him to rule out physical ailments, Tumors, concussions, or Tramitic Brain injury for a couple. I was shocked when we were immediately referred to a psychiatrist. Upon seeing my sons psychiatrist I was asked to provide a CT scan from the previous year (to rule out brain injury) and he was immediately prescribed medication. After providing the brain scan ( from an emergency room visit for concussion) I was told by my sons psychiatrist of they said no brain bleeds so it’s not physical. As a parent should I seek a more in depth physical examination ? Call it mothers intuition but I have a gut feeling there is more going on physically. I’m no stranger to mental illness (I was diagnosed as bipolar years ago), and want to make sure he gets the helps he needs but I also want to make sure it’s the right help. Some of his other symptoms include, mood swings, irrational anger, memory problems, sleep paralysis, and he is tired all the time. I know these symptoms describe a bunch of physical and mental disorders but again I’m not sure every thing has been done to rule out a physical cause. Since my son told us he has been on antipsychotics for 2 months, he hasnt been hearing any voices but none of the other symptoms have not gotten better. He has now started his sophomore year of college and if anything he just seems like something’s still going on. Should I press for more testing? I just want my baby boy back…


#2

Hello and welcome to the forum. I’m so sorry this is happening to you all.

High school athletes certainly take a lot knocks to the head, so of course concussions or other brain trauma need to be ruled. It sounds like that has been done. Other things can cause psychosis as well though, including seizure disorders, thyroid disorders, and drug use. From what I was told, a person will generally experience psychotic symptoms for a minimum of 6 months before being diagnosed with schizophrenia.

The unfortunate thing about schizophrenia is that it includes 2 sets of symptoms, one of which cannot be controlled or improved by anti-psychotic medication. Those are the “negative symptoms” and one of the most detrimental of those is low or no motivation. Your son’s tiredness could be a side effect of the meds, but it could also be a negative symptom of the illness. My son dreamed of playing in the NBA or being a Navy Seal. Now he aspires to nothing.

Our son was diagnosed 2 years ago, at age 20, during what would’ve been his sophomore year of college. He too started showing symptoms as a senior in high school, and then went on to have a terrible freshman year of college. He never started his sophomore year. He’s now 22 and lives at home with us.

You also mentioned mood swings and irrational anger. There’s something called “schizoaffective disorder” which is a combination of schizophrenia and bipolar. This is what our son has, and your son may have this as well. Antipsychotics often contain mood stabilizers, so hopefully things will get better in this department.

Stress is a major trigger for an upswing in symptoms. Is your son living at home while attending college? It’s really important that he be monitored extremely closely because things can change very quickly at the beginning of this illness.

When our son was first diagnosed, we were told it can take 4 to 5 years for the illness to fully develop. We’ve been finding that to be true so far. The medication can only do so much.

As a mother, I know how much pain you’re in. The beginning of this journey is the most confusing because this illness hits out of nowhere and robs us and our children. The grieving can be unbearable. Seek support. This forum is a great place for it.

I really hope your son was misdiagnosed. Read and learn everything you can about schizophrenia. Knowledge is strength.

You’re not alone.


#3

The ages of 19-early twenties is the common age of onset for men and if you have a chance to read through some of the threads, you’ll see this to be true. Many experience their first psychotic episode during college or other major life events.

When my son’s first break occurred, I sought help from NAMI (National Alliance of Mental Illness) and it was during my first meeting that the truth of what was happening to my son was realized. It is a very good thing that your son has been honest with you about what he is experiencing and accepting of medication, this could be a very good for his long-term prognosis - many of us struggle with loved ones who have anosognosia, a lack of awareness or insight by a person suffering from schizophrenia and other psychotic disorders and is different from denial. My son has this. By staying calm, loving and understanding to your son, that honest line of communication will hopefully stay open.

Was he given a diagnosis?

This is a good place to come for support and knowledge through others experiences. We understand what you are going through and as @Day-by-Day stated, you are not alone.


#4

@Holly67, @Day-by-Day, He has not been given a definate diagnosis yet, but the psychiatrist e-mails his notes to my son from every sessions and has mentioned scitzophrenia a couple of times in them. My son has made me very involved in his treatment. I have attended every session but one with his psychiatrist, and he has given me permission to access all his records. His psychiatrist has made the comment that he has never treated a schizophrenic patient that could sit and talk to him like my son did. So far he has been very willing to take his meds and when he lost one and tried to skip immediately contacted me about it. He is living on campus but has been open with his issues with the disabilities director, mentor, and pole vault coach/team at school. He is an hour away and knows my husband and I can be there if he is having issues. I’m glad I found this forum because my parents, my in-laws, and my husband doesn’t believe he is having issues. They believe he is making it up to explain his issues in college his freshman year, he got distracted a bit too much with the social side. He also has had a serious girlfriend for the past 2 1/2 years. When he first told us he was afraid we would think he was crazy. I told him mental illness just means his brain is different, doesn’t make him crazy. I have also been honest with him that if he gets diagnosed he will be in treatment for the rest of his life, and at some point he will feel like he doesn’t need his meds but I will be there to make sure he continues treatment. I am going to insist on an MRI and blood work from his dr. For my piece of mind I need to rule out a psysical diagnosis. He has played football most of his life and even though he has had only 1 diagnosed concussion his "bell has been rung many times. I’ve also implored him to talk to one of the school psychologists a couple of times a month but he has yet to “find the time”. His twin sister has been a great supporter of his treatment. Can people live normal productive lives with scitzophrenia ? I will have to read up on it. Other than online, are there any books I can get? Thank you for your comments, it’s nice to know I’m not alone out there.


#5

This book has been a bible for many of us:

Also, there is plenty online about the overlap (symptoms and genetics) among the psychotic disorders (this being relevant w/ your diagnosis)

The fact that you are being included in all facets of his treatment and diagnosis is huge. The bigger the support system the better. As far as leading normal and productive lives, I can’t offer you much there. My son is unmedicated and lacks insight so we struggle with what move to make next, but in the years that I’ve been on this forum, many of the successful stories begin like yours. All of our journeys and outcomes are different here but we support each other regardless.

I wish you and your son the very best…


#6

Hi 5oranges,

Welcome to the forum, glad you found us. You have gotten some excellent advice already from @Day-by-Day and @Holly67 I think it is a good idea to pursue the concussion, brain trauma, tumor, etc angle - if nothing else- to set your mind at rest going forward. Ruling out such possibilities is actually step one and if they are ruled out, you will be able to focus better on his needs. When doctors hear about a patient hearing “voices” they do tend to think about scz as hearing voices is considered to be the hallmark of the disorder.

Does your son’s current psychiatrist specialize in severe brain disorders? Schizophrenia and severe bipolar are better dealt with by a doctor that focuses their practice on severe brain disorders. Your local NAMI chapter can help you find a doctor that does have the right kind of experience. I mention it because finding the right doctor was stressed to me over and over when I first made a contact with other parents.

So glad for you that your son does want to take the meds and that he is telling you about his symptoms.

So sorry about the other family members. I can understand their reaction - if you haven’t seen scz before it can be really hard to understand what exactly is going on. Really, really glad your son has you. Take care, Hope


#7

I will check in with the local NAMI chapter, thank you so much for the info. I plan on getting him into our GP next week for at least an MRI and Blood work. My son and I have always been very close, as well as the first to butt headsđź’ś


#8

NAMI family support group has really helped me! You are soooooo not alone! I’m devastated hearing the same stories that I’ve experienced with my son! Take care of yourself also!!!


#9

Since your son has insight, I suggest you get as much testing done as possible for as many possible causes of psychosis as can be tested for. Most psychiatrists do NOT pursue physical problems/testing at all. Many psychiatrists haven’t much experience with schizophrenia. The majority (55%) of those who develop schizophrenia do not think they are ill (which is called anosognosia) and won’t treat, or won’t stay on medicine if forced onto it.
I am very happy that your son is allowing you into his life to help manage his illness.

If my daughter trusted me or doctors, I would take her to a “functional psychiatrist” near me, who delves into the body and possible illnesses that could cause brain trouble, as well as using anti-psychotics as needed. One young woman whose blood testing revealed severe mineral deficiency, was relieved all of her symptoms after treated for deficiency. One woman, untested for decades, but given anti-psychotics, never recovered to live a “real” life. She turned out to have a mis-functioning thyroid, which can cause brain trouble, but it was found too late and her schizophrenia never cleared up.

Thank you for telling your story and may you find betterment for yourself and your family.


#10

You can live a mostly normal life with schizophrenia or schizoaffective disorder. I have 6 children, a husband, two grandchildren, and a writing career that solely supported the family from 2005 until 2016.

No, I’m not famous. I freelanced and did content writing. I have 1 novel published by a small publisher and a few self published books. People usually ask that after you say writer.

I still need occasional hospitalizations but have had long stretches of semi-normal life. My kids are normal and well adjusted. They know about mental illness and understand that sometimes Mom needs extra help (hospital). They’re aged from 7 to 24.

Schizophrenia isn’t a death sentence. It can be managed with medicine and support.


#11

Update: we went to a psychologist for cognitive testing this last week. Within 5 minutes of walking in the door he told my son he can see the meds he is on are not working. He was slow and acting like a zombie. Then after 2 hours of testing and talking he believes his symptoms are a result of severe depression as well as tramatic brain injury. My son is now taking a leave of absence from college so he can get the correct meds and therapy :purple_heart:


#12

The biggest hurdle for me has been trying to get my adult daughter to see any kind of doctor who could help her. I am curious, if you don’t mind me asking, how your schz onset and how you got onto medication to manage it? I am smiling very broadly because your post is so much a success story. Thank you for telling us.


#13

I was diagnosed psychotic as a teen and spent my 20a on and off of antidepressants for what was assumed to be major depression. I never was open about my psychosis until last year after a psychotic break from too much stress. That’s when the sza became noticeable to everyone. Before then my obsessions and behavior could be attributed to bipolar.

I had enough insight to know I needed to take care of myself in order to not be a burden on my family- both before when I assumed it was bad depression- and after losing it because I thought my family wanted to kill me. My sza runs in cycles so I have periods of normal or mostly normal thinking.

I hope your daughter decides to get help one day. It is very easy to believe nothing is wrong when well or to refuse to believe we are sick when in the grip of psychosis be side you think everyone else is out to get you.