Family and Caregiver Schizophrenia Discussion Forum

Could it be a misdiagnosis?

Your sons experience is almost identical to our sons who is now 22. He got the diagnosis of psychosis not otherwise specified by at least 2 psychiatrist. He responded well to Olanzapine but wanted to come off of it. He did and he did well until he started smoking pot again. He had to go back on Olanzapine again. He didn’t hallucinate or become delusional just confused and had trouble forming and expressing his words and thoughts. He would forget about his phone for days and basically just stayed right next to me or his dad all day talking incessantly almost manic and not sleeping. He has responded well to both Olanzapine and Geodon and returned to college part time and has held down part time jobs during the last 36 months since the first psychosis. His most recent psychiatrist told him he most likely has schizophrenia and that each time he stops his medicine and relapses it will be worse and or harder and longer to get out of it. I have not found this to be true as long as he takes the right medicine. He was given Abilify by one doctor and he had actually gotten worse on it.
I have heard that Vanderbilt has an Early Psychosis Intervention program. I wish we were in Nashville so we could be involved with their program. As long as your son will take his medicine and responds well to it - he is considered in remission from what I’ve read if he is able to work and go to school and his symptoms have abated. Be sure to educate him about the effects of Pot and LSD or any psycho active drug on the brain of someone who has experienced psychosis. We are 3 years into it and I feel my son finally believes us.

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Misdiagnosis is my worst nightmare… my sister to be diagnosed wrongly would be so unfair to her after she went through major traumas throughout her life…

I am happy for your son’s progress and I wish you well. I reacted to my sister’s situation and deterioration of health really late, she is 33 now and non-functioning… so it is good news you are observing your son at a younger age.

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I am in a similar boat. My 17 year old daughter had a first psychosis in April. She was misdiagnosed as anxiety with obsessive thoughts and we were in denial wanting to believe this. She recovered after about a week with no medication but 2 months later had another small break lasting about 5 days with racing thoughts and delusions and then again 2 months later. Long story short we found another psych who specialized in OCD and who told us her thought pattern as she described when she was in an episode was on the schizophrenia spectrum. We did some genetic testing and found nothing pointing to mental health problems but did find 2 important things. One she is a poor metabolizer on CYP2D6 pathway which is primary pathway for most of these antipsychotics indicating she should be on half the recommended dose of abilify and two she has 2 genes that do not allow her to metabolize folic acid so she is on 15mg of l-methylfolate which a few preliminary studies show can have positive effects on brain structure of those with schizophrenia who lack the genes to metabolize folic acid https://www.ncbi.nlm.nih.gov/pubmed/28289280
Anyway she is currently on 1 mg of abilify which we are planning to cut to .5mg abilify and then try to wean off slowly by going down to .25mg I guess my feeling is she will either have more episodes or she won’t and we need to try to get off. These drugs are so sedating and cause her memory problems that I feel we have to try and pray she is in the 30 -40% that can come off meds. I am still very much in denial but i guess that’s normal…

@jbragg2 those are quite low dosages of Abilify, I’m surprised they would have such a sedating effect. I believe the smallest tablet size is 2 mg. The dosages mentioned and sedation effects are more in line with Risperedal. Effects of drugs vary with the individual, but to my eyes something seems a little off— maybe she’s just very sensitive to AP medication. The good news is I doubt you’d see much difference in AP effect as she titrates down from levels as low as these.

Edit, I looked up dosage information: typical dosages are 10-15 mg for SZ and Bipolar Disorder, 2-5 mg for adjunct therapy with an antidepressant. Smallest tablet size is indeed 2 mg.

Psychiatrists are graduated from different schools. But the diagnosis maybe the same. Your son has to quit smoking forever. All symptoms were caused due smoking.

@jbragg2
Could you give the name of the Genetic test that was given to your daughter?

My son is taking 3mg of L-Methylfolate calcium ( B9 ) each day, which is in the supplement the Dr. Prescribed him a few weeks ago. Maybe they are on to something that may help? I do question the reasoning behind the different dosages though…

My husband was functioning well for a couple of years on 1mg of Abilify (he’d started at 10 mg for 14 months followed by a very long and slow taper to the 1mg over the course of over a year).

When he stopped the medication entirely due to the emergence of some movement issues, he felt better than he had in years for a couple of months (probably due to some mildly sedating effects), seemed fine to me for another month, and then relapsed within a couple of weeks.

He is older, which is associated both with response at a lower dose as well as significantly increased side effects risk even at lower doses. But some people are truly a lot more sensitive to the effects of certain medications than others.

The MTHFR blood test checks for genetic mutations in the C677T and A1298C positions of the methylenetetrahydrofolate reductase gene. This is the test my daughter had. Hope this helps.

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@ itsastruggle Sorry to hear about relapse, I’m very worried about that. Was your husband able to function on 1 mg after relapse or did he need a higher dose or different med?

Well, it took nine months to get him back on medication (lack of insight). Doc didn’t want to restart the Abilify so he started him on Vraylar, a similar medication. He started responding at the initial dose (1.5mg, which is probably more or less equivalent to 5mg Abilify), so no development of medication resistance at least.

I am really interested in the genetic testing you did. I have read that folic acid deficiency can lead to psychosis and what appears to be schizophrenia. Our son was on abilify and it made him so much worse. He had his initial psychosis at 18 from drug abuse and smoking THC heavily. He responded well to Olanzapine stayed free of psychosis until he got off his meds and started getting high again. It sounds like if you daughter came out of a psychosis on her own without medicine within a week - she probably is not schizophrenic. Maybe she had some type of toxicity in her system? Did she use drugs and do you know for sure? Even taking Adderral can cause it. Ive seen patients with UTI or coming out of anesthesia or from drug use come out of psychosis on their own within days. Typically they are not schizophrenic.

Hi, this disease is so confusing. Right now I am trying to enjoy and appreciate each day with her. She had a short second episode 2 months later and came out of it on her own but that’s when we started her on meds. What I’ve been told is the second episode could be something called “kindling”(her brain being more easily triggered) or this could be the prodrome. At this point she is considered to be on the schizophrenic spectrum probably schizophreniform https://my.clevelandclinic.org/health/diseases/9571-schizophreniform-disorder - 20-30% of people will be fine after a year of treatment with no episodes and 70 - 80% will get a diagnosis of schizophrenia, schizoaffective or bipolar, etc.
I don’t think she had any drugs in her system, doctors ran some tests… but who knows…
How long was your son episode free? Did he stop meds with a dr’s supervision? There is a lot of new material about tapering off slowly which makes sense to me. Also seems to be a trend to maintain on much lower doses which is really helpful because of the side effects of these meds. Also been reading about dopamine sensitivity… Sounds like your son is doing really well, back in college and working. This what i hope for…
Re: genetic testing Because I have a relative who works for one of these companies we got a very reduced price and ran a full genome analysis. The 2 most useful pieces of information for this purpose were the information on how she metabolizes medication - there are 4 pathways and she is a poor metabolizer on the one that the AP meds utilize so she is taking a much smaller dose. There is another thread that was started about 10 days ago where the company GeneSight is mentioned Genetic testing for medication and says most insurance covers this.
The other test is for the MTHR gene mutation which shows if you can metabolize folic acid (my daughter is homozygous, gene mutation from both sides) so makes sense to supplement. I think i linked a prelim study where they were using 15mg of l-methylfolate and saw positive changes particularly in people who had this mutation. I asked her psych to prescribe the l-methylfolate in the 15mg dose - it is considered a medical food (not covered by insurance & expensive) There are a few vitamin/supplement companies that sell the supplement in 7.5mg and 15mg doses.
There is also quite a bit of evidence of l-methlyfolate also helping with depression, if you google you will get quite a bit of info

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@jbragg2 We just got the test results back today and My son also tested positive for this gene anomaly. His Dr prescribed Methyl B Complex
by Ortho Molecular Products

I found this article was helpful for me to understand this mutation

Hi, hope everyone is healthy and safe in this crazy time.
Hope your son is doing well. The vitamin looks like a great overall B vitamin, looking at the label the amount of l-methylfolate in the vitamin is 400 mcg. The prelim studies of using l-meth in people who have schz use much higher doses (15mg). Not sure what the dosage should be, your dr must have a thought about it… Here is a link to the abstract https://www.ncbi.nlm.nih.gov/pubmed/28289280

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Here in California they give the diagnosis sz for everyone in the hospital very easily!
People who did drug and start to hallucinate are not schizophrenic, allso people who stop taking some type of medicines and cut them suddenly and start to hallucinate are also not schizophrenic,you can call it brain chemical imbalance
Schizophrenia is something different,it happens naturally without intervention of anything people just start to hear voices or become delusional…etc
I learned by experience that giving diagnoses is a personal opinion here in California at least
My son got different type of diagnosis by different doctors,they just don’t know
Psychiatrists are the laziest doctors in the medical field,they don’t want to make any effort running tests,scans…to learn about the patient instead they just rush to give random diagnosis and write prescriptions and mess up people…
Your son is lucky it was a hit from the first time,and there were not so many experiments because that can make things get worse…
Psychiatrists are always against decreasing meds and/or stop them,i read sometime that in order to see the person’s baseline the medicine needs to be decreased CAREFULLY and I emphasize carefully it has to be done very slowly and very small amounts so the brain doesn’t get shocked

ASMR is fantastic!! I use it myself…

I have anxiety every day about what is going to happen to my son when we are gone. My son was diagnosed at age 17 - similar circumstances as your son. A lot of drug use leading up to his first psychotic break. He responded to the medication in that his positive symptoms went away, but the negative ones did not. I too was hesitant to fully believe the diagnosis.

@SEC - Well, you will like my story and it may give you hope. I am in NO WAY encouraging your son go off meds. I tried to suggest to my sons doc - to reduce the meds, but the doc said 112 was as low as he could go for someone my sons size. My son was hallucinating for (I believe years) he is now 30. Several folks here know my story and I haven’t been on for a while but decided tonight I was going to give an update, but instead I saw your post and here will be my update. Over 2 years ago he was hospitalized (I had the cops come and get him by force) and we eventually got him on 112 of invega monthly. He was on that court ordered. He had a traffic violation and the court ordered him to 1 year of meds and probation. (After 2 months of invega, btw, he was holding down 2 jobs). He could not drink or smoke pot or anything for a full year, which he did not do. He just kept getting clearer and clearer. After the year, he decided to go off the meds against the doctors advice. It has now been 8 months. He moved out of my home 3 months ago at that time he still seemed ok (no psychosis that I could see). He doesn’t like to talk to me much unless he really needs something and he may still have some disorganized thinking but, I do know he is still holding down his job. I believe if he started the pot again we may go down that road again. Fortunately, I think he realizes this as well (he does drink). We believe his extreme psychosis must have been from spice or pot. His father thinks perhaps meth - but I am not so sure about that. I wish you the best and hope you have a good outcome. You are lucky your son is willing to take the meds. Some people believe that the meds are meant to be a reset and aren’t meant to be taken forever. I have a book on that but it is packed away at the moment and I pray I don’t have to drag any of my sz books out again and yes when we were going through all of that it was a horrible pill to swallow that my son was diagnosed with sz.

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Hi Diane… Its ant930, Deb… Funny I came on today because I still get email from the website and was thinking about you… I’m glad to see from your response to this poster that he doing well…That is awesome… We are same here, doing well…I was going to respond to this poster about my experience but you kinda already have done that!!.. Wow… its been a while but time flies when things are going well… Wishing you and your son much health and happiness and a wonderful summer in this currently crazy world we are living in at the moment…

@ant930 How funny that we both randomly decided to hop on within a 12 hour window! Things are soooo much better than 2 years ago. What a nightmare. I really have to thank you so much for sharing your story with me as that is what guided me to manage the doctors to get my son on the invega, which was the drug he needed. Thank you! Now, I can only hope that things will continue to go as smoothly as they can. It’s so hard not being able to really talk to him and know for sure. I do know that when he really needs help he will contact me. He still has the lack of tidiness and he’s not interested in the fun things he used to do. But, I’ll take that and he’s working and hopefully will continue to support himself. Glad to hear things are still going well on your end!

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