He's home - now what? What is this anyway?

Family
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Hi all,

I posted recently (and your answers were so invaluable - thank you again) that I convinced my son (who did not meet his university’s criteria for staying enrolled this semester) to come home for the fall and get treatment. Now he’s here - and things aren’t quite like I expected…

Well, in a way, they’re better.

My son has always been an odd duck and we’ve long suspected Asperger’s. I had him tested in 3rd grade, and they said not - but mainly only because he had one good friend that he cared about. He told me a few years ago that he remembers the evaluation, and actually lied on some of the answers because he perceived (even at 8 years old) that the truth didn’t sound good. As a young adult, he self-identifies as Aspergers, and I can’t disagree with his assessment.

All this is to say that he’s always been kind of anti-social, never having more than one or two good friends. He’s always had his serial obsessions with things which he pursued exclusively - then moved on to something else. He’s kind of blunt and tactless and yet charming (to me, anyway, and to many who know him) because he’s not actually mean-spirited, just a little clueless.

Anyway, he’s never been super communicative, but he basically fell off the face of the earth this spring. It was terrifying. I felt like my son was completely gone. He went from somewhat antisocial to hermit, never even leaving his house. He refused to answer texts, emails, calls. After a desperate welfare check, he ended up in the hospital and that’s when I found out he’d been hearing voices.

Bringing him home, I feared the worst. I was ready to hear some weird things, I’m a little ashamed to admit I put a stronger lock on my bedroom door. But since we got home, he’s… well, he’s him. Still odd, still obsessed with his “passion of the moment” (currently the stock market) and able to talk about it endlessly. But as far as I can tell, he doesn’t really have any odd delusions.

He is still hearing voices. I asked him today, and he doesn’t really want to talk to me about it, but he waggled his hand in the air - yes, he’s hearing them (sometimes? all the time? I don’t know - I don’t really want to press my luck too far at this point, as he’s still kind of angry about being home…). But he knows that they’re not real, he wants them to go away. He’s dismissive and skeptical about the whole psychotherapy route, but accepts that he needs treatment (if nothing else so that he can get re-admitted to school).

I’d kind of labeled him paranoid because he felt I was trying to harm him, but now that he’s home and he’s somewhat forgiven me on the whole credit card issue, he doesn’t seem to think that any more. I’m wondering if he’s suffering more from anxiety. The reason he suffered so much from losing the credit card was because it turns out he’s terrified of using his bank card. Which is not rational, I realize, but it stems from fear of being denied and then judged by cashiers and other patrons - which is at least something that might actually happen.

Still waiting to hear from the FEP program in town (they called today to say they did get the fax and are working on getting his records). In case they say No, I’ve made him a few other appointments (MD, therapist) - including one with a local sleep clinic (his sleep is really awful, and has been for years).

Really, this is already too long, and I’m not even sure what my questions is. I suppose it’s this - does it sound like schizophrenia? He’s got dismal sleep habits and anxiety at the very least - can these things cause auditory hallucinations? He may have substance abuse problems too. I know he still has pot in his system, and given the chance to drink, he can go to excess pretty quickly. His voices do sound fairly classic, though - nasty and judgy, telling him he’s sub-human and worthless. It breaks my heart.

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Hi @soworried - I’m glad your son is safely home where you can monitor him closer. It could be sz, hard to say. Did they do all the regular tests on him like his thyroid. Other studies have shown it was gluten that mirrored sz symptoms. Bipolar people can also hallucinate. I’m glad you are getting him to a professional who will be able to give you a better assessment. In the meantime, I’d keep reading the forum and you’ll gradually keep learning more about what is going on for him. It could also be drug induced. Most will tell you the drugs brought out what was already there. There was one mom on this forum whose son was in full blown psychosis for three years. She had him on invega for a year, he went off of it, and now she says it’s like he never had it (sz that is). The doc and she thought it was from him smoking spice. There are soooo many variables and so many options to get him better. Just keep trying different things until one will work. I’m sure of it, being that he is willing to take meds and/or supplements.

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Wow. This is going to be a challenge for diagnosis. You have the potential for Aspergers, as well as anxiety and positive psychotic symptoms.

How did he manage during the first 3 years of college? Did he need any accommodations? Did he need anything special while in high school? Was he on an IEP, for emotional reasons?

I’m just really glad he’s home with you. It sounds like the increased anxiety and the pot smoking could be a recipe for disaster.

I hope your son doesn’t have schizophrenia. I hope professionals can rule it out. Just please get your kid to stop smoking pot. It’s playing with fire.

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Thanks. He did really well in college up until last semester. Grades dropped, and it looks like he had to drop a class as well. He’s never been diagnosed with anything, but I’ve long suspected some sort of OCD as well, as he’s had problems with intrusive violent images that just pop into his head. He doesn’t talk about them much (or while they’re happening), but a few times he did tell me about them. We (my sister, my bf and I) tried to talk him into therapy then, but he brushed it off. He didn’t have a compulsion to act on them, but wished them gone. (You can imagine what I thought the voices might be saying to him, but so far at least that doesn’t appear to be the case).

I’m hoping that whatever helps the other symptoms will help with this as well. I got him to try taking sarcosine over the last couple of days. I’m not sure if it’s helping or not, but he only had 2g for the first time today.

I will keep on him about the pot. It’s hard because he really likes it, and thinks it helps him in other ways. He’s not on meds yet (we didn’t manage to bring the written Rx, and don’t have a doc here to prescribe yet), but did grudgingly admit it was pointless to go to the hassle of taking meds and then possibly counteract them with pot. I think he will stay clean for awhile, but he told me flat out he wasn’t sure he could give it up forever. I also worry that if he gives up pot, he could just switch over to abusing alcohol - he can down it in an alarming way when he wants to.

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I agree with @DianeR and @Day-by-Day.

Voices are generally the “hallmark” of scz, but other things can cause auditory hallucinations. You do sound a lot like we did after we brought our son home to live when we finally realized that something was wrong. While many things had happened that seem obvious looking back, our eyes were opened when he calmly told us we had just called him a name. Just as calm as he was, we told him we knew we had not called him a name. He said that we had called him a name that we just didn’t realize, our subconscious had done it. Something in that exchange finally broke through to my husband and I. Jeb was so serious and earnest when he said it. We left his place a little after that, went to a beer place, ordered beers, and just sat there in a long silence trying to get our minds around what had just happened.

We told him he had to come home to live. Over the next few months living with him, we could see things were not okay. He said he had social anxiety and that seemed to be true. We learned that if a loud noise occurred he would become oddly angry - well we thought it was anger. Sudden noises were actually triggering psychosis - but we didn’t know what psychosis was at that point.

4 months after we had called the closest NAMI about a Family to Family class, they called back to let us know we could be in the next class which started in a month. The instructor, who has become a good friend, was the first person who actually listened to what I had to say about the details of what was going on with our son.

We started the class and I slowly realized that the instructor was trying to get me to understand that Jeb had scz. I told my husband, “I think the instructor thinks Jeb has schizophrenia” his response was utter disbelief. The instructor kept trying, she still says we were in denial. I still disagree - we just didn’t know what scz could look like.

My husband and I agreed to meet a psychiatrist NAMI recommended who was an expert on scz. Not all psychiatrists work with people with severe mental illnesses. I was surprised by how many things my husband wanted to ask in the session. The doctor told us it did sound like scz and gave us advice on how to proceed.

We still didn’t quite absolutely believe it. Our son lived with us and we hadn’t seen any proof that he was hearing voices - we were being given proof- he was telling us- in a way -but we didn’t connect the dots. At this point my friend would want you to agree that there had to be some denial going on.

So we watched and waited and finally one day I entered the back of a room where he was watching tv and he said to the empty chair next to him - “how do you know these things?” he was laughing and was happy with whatever the voice had said. A few days later, he went into the bathroom and I could clearly hear him having a conversation. I guess he knew to hide his talking to the voices. He has never admitted to hearing voices. He tells me that real people call him names - his scz affected brain confabulates (tells itself a story) - he doesn’t hear voices- when he hears negative things being yelled at him, he puts the blame on whatever people are closest. It doesn’t matter how far away those people are, he is sure that’s who is yelling names at him.

If it is schizophrenia you will know for sure eventually. My son graduated from college, his scz didn’t disable him entirely until his early 30’s. His version is the insidious sort, it gets worse very slowly.

Pot helped him cope at first, in later years, it made him worse.

Medicate him while he is willing. Therapy for scz isn’t so much typical talk therapy. Cognitive Behavior Therapy is about learning skills that help people cope with their scz symptoms.

Best of luck to you, really hope its something else.

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My friend heard my phone conversation with him, and said his description of the voices is pretty typical for scz, which I knew. But it’s odd how he’s able to describe what they’re like. He doesn’t deny that they exist. He knows that they’re not real. He even says that the fact that he took two psych classes last semester is messing with him, because his subconscious uses what he learned against him.

I mean, something is definitely up with him, and I now realize, has been for years. The voices are just new. In other ways, he’s acting like himself, but he’s never been exactly a normal kid. We guessed at Aspergers, but it could have just been a pre-cursor to scz. Still, he’s been odd since he was a toddler. I’m hoping regular therapy with CBT may help him deal with a variety of issues (including the intrusive thoughts).

Right now, I’m just relieved he’s here, still cracking the occasional joke.

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My friend always counseled me to just enjoy the good days when they happened.

I was surprised that the average time for voices to show up is 7 years after onset. That’s quite a time span if 7 is the average.

My older son has Asperger’s, my younger son actually told me he thought he was “getting Aspergers” when some of his symptoms started.

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There are a lot of open access scholarly articles (via Google) reporting on the overlap of Asperger’s and Schizophrenia, two of those being delusional thinking and auditory hallucinations.

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The FEP is the best place to get the assessment of whether or not these symptoms are part of a psychotic disorder or something else. There are lots of diagnoses that have what are sometimes called psychosis-like symptoms.

Whatever is going on, he will benefit from understanding what is happening and how he can help himself to feel better and to reach his goals. It might not be sz (we’re not doctors and even if we were, we have not met your son). You can still post here, talk to us, let us know what’s going on.

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Thank you - you all have been so great. Whatever the case, I’ve felt like he needed help for quite awhile, but seemed to struggle along, happy enough with his odd self, so I didn’t push it. I’m hoping that whatever it is, he can get help with all of it.

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My son still smokes pot and is on meds. Both the Doctor and I try to steer him away from that. He no longer isolates, is not paranoid nor hears voices (which he said he did not). He did have disorganized thinking and was deemed not competent to go to court. He is better now even with pot smoking. He says he smokes cigarettes one day and pot the next. Without the meds … well I am sure that day will come and I’m not looking forward to it. Is your son willing to try the meds?

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ps. (over a year ago) My son was home for about 4 months unmedicated and started a job with a group that helps people with mental illnesses get jobs. They said he had to go on meds to keep the job. We went to a psych doc and got meds which he refused to take. They said he couldn’t keep the job. He went into isolation. In his room all sleeping most of the day and up all night so he didn’t have to see us. If you can get him to a doc (before he starts isolating - not that he will) that would be great. The isolation was awful and I finally had the cops break in and haul him off to the hospital. Just as a possible heads up : )

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He was terribly isolated all summer - refusing to answer phone calls, texts or emails. I went down in early June and he pushed me out the door of his house and locked it. A welfare check sent him to the hospital, where he admitted he was hearing voices. They gave him Risperdal for 2 days and then let him go with an Rx (which he, of course, did not fill).

However, it got real for him when he failed to meet his college’s requirements for returning, and had to withdraw for the fall semester. He’s agreed to come home with me and get help. Since being home (just a few days), he spends a fair amount of time in the finished basement, but then again he’s always done that. He pops up to cook and eat and maybe sit down and watch TV for a bit. When he’s around, he’s pleasant. But when he goes to the basement, he clearly wants to be left alone. He gets annoyed and agitated if I come down.

Unfortunately we don’t have his Rx, so he’s not medicated right now. I contacted the Dr. he saw while away and asked if there was any way he’d call in a replacement to a pharmacy here, but no answer yet.

He’s not psyched to be on meds, but has agreed to give it an actual try (his previous stance was - I tried it, it didn’t work). He reluctantly agreed that 2 days wasn’t a fair trial. I have an appt for him for Sept 11, but I’m going to keep trying to find someone sooner - also, the FEP program may take him and I’m assuming he’d get them sooner if that happens.

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I would think they could call it into a location closer to you. Tell them you have that appointment in Sept. as they are on meds they need to see a doc for side effects (I’m sure you know). My lovely son eventually barricaded me out of the house. That was the tipping point. Thankfully, I had this forum to support me through it. I’m glad to hear your son is willing to give the meds a try. They say sarcosine can help if you want to try something else in the meantime and idk if you’ve followed some other threads but another mom has had luck with some homeopathic tablets. I think I can find the link she posted. Let me see…

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Thanks! He’s actually been taking sarcosine for a few days. Not sure whether it’s making a difference, but he seems reasonably cheerful. He also goes out pretty regularly - to the grocery, to get a haircut, etc. I do feel bad that he has absolutely no friends in the area (everyone is at school), but he’d probably just get high with them, anyway… :neutral_face:

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I also just sent an email to our regular family doc to see if there’s anything she can do regarding the Rx.

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I’m glad to hear he is able to go out. Here are those other links about homeopathic tablets in the meantime (in case you are interested). I have not tried these but will when the time comes that my son refuses his shot. I think I’m a few months away from that. Yikes!

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Just be sure to get the 200 strength. :blush:
I hope you have as much success as I seem having.

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Hi all, I updated the other thread where I described bringing my son home, but I wanted to update this one as well - the doctor he saw in the hospital did call in an Rx for him to our local pharmacy. He took his first pill this morning (with zero enthusiasm).

Still, this makes me feel much better, that we’re not just spinning our wheels waiting for something to happen. (Still no word from FEP program, and first MD psych visit is not until 9/11). I think the timing for the MD is now good, as he should have some indication by then whether the Risperdol is helping or not.

Meanwhile he has an in-person therapist visit scheduled for next Monday. Not sure if this is a good idea or not. The guy seems nice, but it’s probably about a 45 min drive away, and there are many therapists nearer - just not as readily available (now that he’s going to be on meds, I’m a little less anxious about getting him seen ASAP). Another company offers telemedicine visits. I’m not sure but I think maybe my son might be happier with this…? Does anybody have experience with this sort of therapy?

One final question - I know that part of the FEP program is scans and tests to rule out medical reasons for the psychosis. I’m wondering if I should schedule a visit with his regular Dr. to get this ball rolling? I suppose it can wait a few more days while I hope for good news from FEP.

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Hi Soworried, my son has schizophrenia. You’ve probably seen the therapist already. They may have had him answer a questionairre that let’s them know if he has schizzophrenia. I’m giving you this info in the event he does because I don’t visit this site often. My son grew size C breast while on Risperidone (generic for Risperdol) - the doctor warned me about that. I couldn’t get any help about his breast getting larger other than to change medications. After switching to Olanzapine he told me that it was so much better than Risiperidone (generic) for reducing the number of auditory hallucinations. He would take a 15 or 30 MG tablet each night before going to sleep and would sleep all night. I think it totally stopped his visual hallucinations. It caused him weight gain but that was better than so many hallucinations. I had blood work done on him and it caused him no problems other than the weight gain.Cutting back on fattening foods took care of the weight problem. Stress brings on the hallucinations and perhaps the pot is helping by stopping the stress. In stead of pot, my son takes the med Alprazolam 1MG to stop the stress and halt the hallucinations sometimes within 5 minutes and in 30 minutes at the most. Alprazolam 1MG will put you to sleep. I have no medical training. I’m sending you this because I’m just a Mom who’s heart goes out to any loving parent who may experience the suffering and agony I went through until my son got better. I believe if YOU keep searching to help your son, you’ll find the help and medications he needs and he will get much better. :smile:

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