[pink&grey]

Hi all, I'm a member of the bipolar support group but am jumping over here hoping someone might be able to help me out. As background, and so you know I'm not jumping the gun, I have posed this to the bipolar group, the ADHD group and seen a pDoc. I still have no real understanding....

My son is 12. He's always had difficulties, was diagnosed with ADHD at 8 and has been on stimulants for about 3 years more or less. Always with a GP until recently when I took him to my psych (I have Bipolar disorder). I moved him to the psych because he still has emotional regulation problems even with the ADHD meds. He gets aggressive towards himself physically and verbally and is highly oppositional with adults. Anyway, he broke down about six months ago and told me he hears voices.... This would be the part where the ADHD and bipolar groups couldn't really help.... On his 2nd visit to pDoc he talked about the voices and pDoc prescribed risperdone. He hasn't even been on it for a week.

So, all that is the background for my questions. The voices didn't really get me concerned until I heard him answer some of the questions the pDoc asked. Turns out the voice tells him to do things towards his family that aren't real great if you know what I mean (I'm paranoid about putting this in print so don't want to quote). He also said he gets paranoid that strangers are out to hurt him. So, my question is around understanding the voice. He says the voice is his voice but does not come from within his head. Sometimes he says it's just out of his head, but sometimes it's not. ??? He says it's not thoughts, but a voice. The voice tells him negative things 100% of the time, and is strongest when he's very sad or very happy. Once he attacked the dog and later said that it was the voice egging him to do it. I don't think it was just an excuse....he wasn't even in trouble because I could see he did because he was suffering, if that makes sense. Anyway, I don't understand the voice. I can't make sense of I t and don't know what to do or how concerned to be. So far the risperdone hasn't fixed the voice.

Ok, basically I just rambled on and on. I hope that's ok here and I hope maybe someone can help me understand or maybe help me help him. I searched voices and this seemed to be the group whom gets that!

Thanks so much,
P&G

[faerie_moon_x]

I'd leave it up to the pdoc to diagnose, but lots of people hear voices. Commanding voices, though, are usually concerning because they are often mean in what they say and threatening. I don't have a voice like this so I don't really have experience with it. But, I think one key feature of threatening voices is that they lie. They will threaten you if you don't do what they say, and really, they can't do anything. It's a lie.

But, it's scary and hard to deal with. There are other people here who probably have better advice.

[pink&grey]

Originally Posted by faerie_moon_x

I'd leave it up to the pdoc to diagnose, but lots of people hear voices. Commanding voices, though, are usually concerning because they are often mean in what they say and threatening. I don't have a voice like this so I don't really have experience with it. But, I think one key feature of threatening voices is that they lie. They will threaten you if you don't do what they say, and really, they can't do anything. It's a lie.

But, it's scary and hard to deal with. There are other people here who probably have better advice.

Hi Faerie Moon, TY. I'm not really looking for a diagnosis, just want to understand and cope. The fact that they lie is a good point. Maybe I can find a way to help him see this. I'm just so hesitant because I don't get it so if I try to give him advice will I screw it up and make him feel worse? It's like planning the birds and bees talk, but much more nerve racking because I don't know the answers!!

[pink&grey]

You know what? He told me the voice said something was going to happen and it didn't. I'm just going to gently point out that it wasn't true. Thanks again and hugs!

[Sometimes psychotic]

Originally Posted by pink&grey

Hi all, I'm a member of the bipolar support group but am jumping over here hoping someone might be able to help me out. As background, and so you know I'm not jumping the gun, I have posed this to the bipolar group, the ADHD group and seen a pDoc. I still have no real understanding....

My son is 12. He's always had difficulties, was diagnosed with ADHD at 8 and has been on stimulants for about 3 years more or less. Always with a GP until recently when I took him to my psych (I have Bipolar disorder). I moved him to the psych because he still has emotional regulation problems even with the ADHD meds. He gets aggressive towards himself physically and verbally and is highly oppositional with adults. Anyway, he broke down about six months ago and told me he hears voices.... This would be the part where the ADHD and bipolar groups couldn't really help.... On his 2nd visit to pDoc he talked about the voices and pDoc prescribed risperdone. He hasn't even been on it for a week.

So, all that is the background for my questions. The voices didn't really get me concerned until I heard him answer some of the questions the pDoc asked. Turns out the voice tells him to do things towards his family that aren't real great if you know what I mean (I'm paranoid about putting this in print so don't want to quote). He also said he gets paranoid that strangers are out to hurt him. So, my question is around understanding the voice. He says the voice is his voice but does not come from within his head. Sometimes he says it's just out of his head, but sometimes it's not. ??? He says it's not thoughts, but a voice. The voice tells him negative things 100% of the time, and is strongest when he's very sad or very happy. Once he attacked the dog and later said that it was the voice egging him to do it. I don't think it was just an excuse....he wasn't even in trouble because I could see he did because he was suffering, if that makes sense. Anyway, I don't understand the voice. I can't make sense of I t and don't know what to do or how concerned to be. So far the risperdone hasn't fixed the voice.

Ok, basically I just rambled on and on. I hope that's ok here and I hope maybe someone can help me understand or maybe help me help him. I searched voices and this seemed to be the group whom gets that!

Thanks so much,
P&G

So first kind of a bummer the risperidone hasn't kicked in yet...for me it took about a day to reduce to voices by like 80% and they got a lot quieter and therefore easier to ignore they tend to be really loud. So I heard two kinds of voices those inside my head and those that sounded like they were outside like real sounds...those were the scariest but they were distinct from thoughts...for me the inner ones actually came from like different areas in my brain when I pictured them but I've never heard of this in other people...basically voices were on the right vs my inner voice on the left, when I'm well my inner voice is central. But yeah it sounds like he's having full auditory hallucinations. The thing is if he does something like attack the dog in my opinion he still needs to be punished for that even if the voices "made" him do it. My voices kept telling me I needed to crush my pet bird so she would be reborn as a mini dragon and be able to filter my voices for me thus eliminating them. I never did this...I still had a moral code...it's just extra pressure...if he starts listening to the voices things could get bad. I'm not saying grounding or anything but take the time to explain that this behavior is unacceptable and that certain things must never be done there is no hurting or killing of anything. I have no idea why the voices tend to go toward that kind of high drama stuff but they do....mine were actually mostly pleasant telling me I was a shaman and could heal the world by correctly channeling energy and stuff...they mostly tried to help me be better but then they would slip in that weird stuff about killing my bird or myself or other people like it was perfectly normal and even expected.

I would say its a good idea to teach him coping mechanisms...there are methods to reduce the voices although I only ever got this to work when I was already medicated. Usually this is any sort of high engagement activity. Sometimes it's as simple as watching an awesome movie or listening to music but some people actually receive commands this way do you have to determine if that's a problem. What personally works for me is singing mostly because it takes my full concentration to remember the lyrics and adjust my voice. Also I picture things in my head in three dimensions with movement and that's complex enough to stop them. I know I posted some tips in this in the past possibly under stopping the voices but here is a link to get you started...

Self-Coping for Psychotic Symptoms (Voices & Delusions)

This is not to say he will be able to control them for sure but a lot of people can and it's a huge relief. Just the idea that they can be stopped even temporarily is amazing...they are so overwhelming because you cannot shut them off and they start to be correct about things so you believe them...if they are wrong they usually just say they were just testing you or joking or something...it's whatever you have in your own brain that you have to fight so that's makes it harder. My voices concentrated on things I didn't know for sure...did I believe in shamans, remote healing, psychic communication, well I thought it was possible but unlikely but when it actually happens you start to believe...other things they just ruled out because I already had firm beliefs about them...I initially thought the voices were being transmitted by microphone but after 2 weeks I realized any battery small enough to fit in my teeth or whether would be dead by now so I switched to being psychic and telepathic... I thought briefly the military was involved but realized they were simply too inept and did not have the technology to do this. Basically my set beliefs and moral code did not change but what I worried about was being tricked and about things for which I did not have the answer. For example is all killing wrong? Would killing one person to save the world be wrong...my brain absolutely preyed on these kind of moral exceptions although I was never really inclined to hurt anyone I always worried about the possibility I could be confused by that and tricked into something horrible. So I think having a firm rule set with little room for exceptions is good and less confusing when being assaulted by the voices. But that's just me...I am a bit of an exception in that I had a short psychosis of about 1.5 months and fully recovered(so far fingers crossed)The experience is a bit different for everyone. One final thing you might want to look up is a girl named January with childhood schizophrenia...her parents help her by keeping her busy all the time...it's the engagement thing that really helps distract you from the voices.

[lil-angel-wings]

When my son was 7 he was put on a drug for ADHD, and started to become suicidal and seeing things and hearing voices. I tried to get him off but it ended up that the state got involved because I was not wanting him on meds and the teacher at school threatened to get them involved,and I lost custody. I watched him get medicated for the voices and suicidal things until he was around 12. He got moved in to a foster home where the foster mom did not feel he needed the meds and they took him off. The symptoms all stopped. Then he got put back on the ADHD meds at the age of 15 or so and things were not as bad but he really had a lot of other problems with behavior.

He was first DX as ADHD, the ADHD with Oppositional deficiency disorder, Now he is in his 20's ( NO LONGER ON MEDS) and says he believes he is Bi-polar. IDK... I think that meds played a big part in all the dysfunction.

That's just my experience.

[pink&grey]

This is all great information. Thank you so much for sharing your experiences and knowledge. I'm definitely wondering if the ADHD meds are part of the problem. And now, he says the Risperdone hasn't taken the voice away but instead he's now hearing a noise like a TV is on. I'm so confused. I'd like to take him off all the meds and see what happens, but he is unable to get along in school without them and would get kicked out (private school). I do know, however, that he had issues before the meds. I can remember him saying suicidal things as early as 6 y/o, and even before that he would go into long rampages destroying his room, hitting himself against the wall, attacking his sister, etc.

Again, I'm rambling and thinking out loud. And I feel bad because it sounds like he is just a nightmare, but he's not. He has a lot of wonderful things about him as well. He just believes that less and less because the voice tells him all these negative things. I"m off to look at all the resources behind the link and see how I might introduce him to some of this info. THANK YOU!!!!

[Sometimes psychotic]

You can hear any noise it doesn't have to be just voices---I was actually creating new music in my head at one point----it wasn't particularly good but it was something I had never heard before. Personally the TV thing would probably be an improvement from voices---because its not telling you what to do. Watch out for other types of hallucinations too while most people hear things you can physically feel things, smell things and see things as well---these are less common and can sometimes indicate a medical problem like epilepsy---the docs may want an MRI or EEG to rule this out but a lot of that depends on whether he responds to the meds or not.

[faerie_moon_x]

I hear noises more than voices. I used to hear a phone ringing over and over for hours. Every time I would go to answer the phone it would stop, and every time I would leave the room it would re-start. It was horrible because at that point you really do feel like you're going crazy.

I randomly hear voices but they are usually just one word or laughter or things like that. These are outside voices. Inside voices I'm not so sure about any more, but that's a long story.

[Gr3tta]

I started hearing voices in childhood. Your son is lucky to have you in his corner.

One thing i encourage you to do is to empower your child with "no."
You have most likely taught this as it applies to ordinary people. If a stranger pulled his car up to your front yard, and ordered your son to get in, you've taught him that he can say "no," right? Make sure he knows the same applis to voices. If one tells him to do something he knows is wrong - he can say no, he can tell you, he can ask for help, just like he would for the stranger in the car.

[ickydog2006]

I think Gretta had great advice. And the sounds I hear come from inside and outside as well. Usually the tv sound and voices come from inside. And clicking and phone ringing etc come from outside. It's also weird, as someone else mentioned, that I hear them in certain parts of my brain, it actually feels like that's where the sound is coming from. He may need a different med. Most of mine that took away voices usually worked within a couple days. And I have had it go from voices to tv sounds. Tv sounds are distracting and annoying but they tend to take away the danger of hurting others. It still makes me want to hurt myself though when the noise won't stop. An anti anxiety helps me, I take Xanax as needed, to ease my anxiety and discomfort when the voices happen since I've had really bad side effects on antipsychotics. It's good you're working on treating him young. It's easy to turn to self harm, alcohol, and other drugs, to self medicate. Make sure he knows to come to you when he has urges to hurt something, that you won't get mad. That he knows you'll work with him, talk it through if he wants (you can talk about what they are saying and what the practical implications of obeying them are and that they lie a lot), or you can just be there with him as an accountability partner so he knows that someone is with him if that makes it easier to not listen to them, or you can take him to the hospital if that's what he feels he needs at the time. I also take sleeping pills when things get bad cause that is often my only escape from the voice, but it's not a long term fix, but it helps when I'm sleep deprived or losing my ability to make wise decisions. It's prescribed and strong so I need to be semi monitored when I'm on it. I don't know if any of that helps. I'm sorry you and your kid are having to deal with this.

[pink&grey]

Thank you Gretta and Icky Dog. The simple ability to say no is huge! And somehow it never occurred to me. I'm working on maintaining the safe conversation with him as well. You guys are all great. Thanks for the non-judgmental advice.

[nbritton]

What month was he born? I ask out of curiosity, schizophrenia is more common in those who were born in the winter months.

[pink&grey]

Hmmm. He was born in January.

[pink&grey]

Well, I researched that and am now thinking over a lot of stuff. For the second trimester of my pregnancy, I lived in Mexico and became very ill at one point with some kind of infection. I also fell down pretty badly 3 times and electrocuted myself once (the electricity there is unstable). Then, I came down with Gestational Diabetes. After he was born he was sick from about 2 weeks to about 6 weeks old when he finally had surgery to correct a colo-rectal issue. Of course that entire ordeal included lots of tests to figure out the problem and anesthesia.

So, I'm laying all that out there in case anyone else happens to know of potential predispositions I might need to take into account. Thanks!

[punkybrewster6k]

Originally Posted by pink&grey

Hi all, I'm a member of the bipolar support group but am jumping over here hoping someone might be able to help me out. As background, and so you know I'm not jumping the gun, I have posed this to the bipolar group, the ADHD group and seen a pDoc. I still have no real understanding....

My son is 12. He's always had difficulties, was diagnosed with ADHD at 8 and has been on stimulants for about 3 years more or less. Always with a GP until recently when I took him to my psych (I have Bipolar disorder). I moved him to the psych because he still has emotional regulation problems even with the ADHD meds. He gets aggressive towards himself physically and verbally and is highly oppositional with adults. Anyway, he broke down about six months ago and told me he hears voices.... This would be the part where the ADHD and bipolar groups couldn't really help.... On his 2nd visit to pDoc he talked about the voices and pDoc prescribed risperdone. He hasn't even been on it for a week.

So, all that is the background for my questions. The voices didn't really get me concerned until I heard him answer some of the questions the pDoc asked. Turns out the voice tells him to do things towards his family that aren't real great if you know what I mean (I'm paranoid about putting this in print so don't want to quote). He also said he gets paranoid that strangers are out to hurt him. So, my question is around understanding the voice. He says the voice is his voice but does not come from within his head. Sometimes he says it's just out of his head, but sometimes it's not. ??? He says it's not thoughts, but a voice. The voice tells him negative things 100% of the time, and is strongest when he's very sad or very happy. Once he attacked the dog and later said that it was the voice egging him to do it. I don't think it was just an excuse....he wasn't even in trouble because I could see he did because he was suffering, if that makes sense. Anyway, I don't understand the voice. I can't make sense of I t and don't know what to do or how concerned to be. So far the risperdone hasn't fixed the voice.

Ok, basically I just rambled on and on. I hope that's ok here and I hope maybe someone can help me understand or maybe help me help him. I searched voices and this seemed to be the group whom gets that!

Thanks so much,
P&G

I have been where you are. ADHD meds since she was young just did not quite work. Keep working with the pdoc and therapists. Let them observe and stay a strong advocate for your son. You know when something is not right. Insist and be assertive if need be.

In our experience, your son should have seen a change by now. tell the doc right away and insist on something different if you feel the need.

It is very scary to hear what comes out of your sons mouth while he is talking to his pdoc. Been there too! I had to leave the room and compose myself. We are here for you and hope you keep coming back here for support. From one mama to another,

[punkybrewster6k]

Originally Posted by nbritton

What month was he born? I ask out of curiosity, schizophrenia is more common in those who were born in the winter months.

Mine was born in January too......

[ickydog2006]

I'm January too... interesting

[nbritton]

He has had a complete neurological and endocrine workup? i.g. fMRI, EEG, Labs?

Taking into consideration your mental health history, his present symptoms, and his winter birthday, he has schizophrenia or schizoaffective disorder; if he has prominent mood symptoms then it's schizoaffective disorder, otherwise it's schizophrenia. Since you indicated he has trouble with emotional regulation, I'll presume it's schizoaffective disorder. Has he ever suffered mania or depression that has lasted longer than two weeks?

I would recommend that you take him off the ADHD medications. I'm of the opinion that his ADHD symptoms are actually a subset of his schizoaffective disorder. Long term use of stimulant based medications can damage his brain and more than likely exacerbate his schizoaffective disorder. More then likely his stimulant medications is actually the reason why he is hearing voices at this age. Seriously. Work with your doctor and temporarily take him off all ADHD type medications.

Also take him off risperdal, otherwise he'll start having cognitive defects too. You'll want to try him on something like Latuda or Abilify. These are targeted specifically for things like schizoaffective disorder, and have less cognitive impairment. I really think if you get his schizoaffective symptoms under control his ADHD symptoms will go away.

There are supplements you can start him on, in particular you should start him on an antioxidant, as oxidative stress is a major factor in bipolar and schizoaffective disorder. I personally would recommend N-Acetyl-Cystieine and Astaxanthin.

[nbritton]

Originally Posted by pink&grey

Well, I researched that and am now thinking over a lot of stuff. For the second trimester of my pregnancy, I lived in Mexico and became very ill at one point with some kind of infection. I also fell down pretty badly 3 times and electrocuted myself once (the electricity there is unstable). Then, I came down with Gestational Diabetes. After he was born he was sick from about 2 weeks to about 6 weeks old when he finally had surgery to correct a colo-rectal issue. Of course that entire ordeal included lots of tests to figure out the problem and anesthesia.

So, I'm laying all that out there in case anyone else happens to know of potential predispositions I might need to take into account. Thanks!

Yes, gestational diabetes is also another factor that increases the risk of schizophrenia in off-spring.

"Epidemiologic studies have shown that the offspring of mothers who experienced diabetes mellitus during their pregnancies are 7 times more likely to develop schizophrenia, compared with those who were not exposed to diabetic pregnancy."[1]

Infections also contribute too...

"maternal influenza A in pregnancy has been suspected to have a connection with schizophrenia in the offspring. Brown et al. found that influenza exposure, especially during the first trimester, might increase the risk of schizophrenia (odds ratio 7.0; 95% confidence interval 0.7–75.3). Prenatal exposure to rubella has also been connected to non-affective psychosis"[2]

I'm sorry to say, but considering everything you've stated it's effectively a definitive diagnoses. He has schizophrenia or schizoaffective disorder; I'd probably shelve, or entirely abandon, the ADHD diagnoses. The final decision between schizophrenia and schizoaffective disorder will largely come down to how severe his mood problems are. Does he have clear cut examples of mania or depression that last for weeks? The mood symptoms need to be more than just day to day emotional reactivity to satisfy the criteria for schizoaffective disorder.

From a practical perspective, I would just establish his diagnoses as schizophrenia. It's easy for others to understand schizophrenia, for instance, educators have been train to deal with it. You will also have to fight less with insurance and social security disability, as for some reason providers are more willing to recognize schizophrenia as a neurological disorder.

He may always have school problems, you will need to go to his school and talk to someone about setting up an individualized education program.

He may not ever be able to support himself entirely on his own, this is the reality of the situation. When he gets older I would retain an attorney to get him on social security disability as soon as possible, this will take the pressure off you and him so he can focus on things like working at his own pace to complete a college degree. Social security supplemental income isn't much, but it will at least be enough that you can get him his own apartment. Developmentally, he'll likely be at least five years behind the curve. Once his diagnosis is confirmed by your psychiatrist he will likely qualify for some form of public medical assistance, visit your local medicaid office. http://www.medicaid.gov

It will be helpful to get a dedicated social-worker that you can see often. They're very useful in helping to work through the day to day problems or getting you the resources you'll need. Later in life, they'll be able to help your child develop the skills they need to live on their own.

Hopefully, with the recent medical advances it won't be as hard as I described. I wish you and him the best of luck. If you have any more questions let me know. Do not entrust your boys health to a general psychiatrist, you need a, childhood, schizophrenia specialist. You should be able to find such a specialist at a university teaching hospital. The quality of care he receives now will impact him for the rest of his life. You will need to be his advocate, always remember the squeaky wheel gets the grease.

[1:Diabetes mellitus during pregnancy and increased risk of schizophrenia in offspring: a review of the evidence and putative mechanisms
[2]:Predictors of schizophrenia?a review

[pink&grey]

AAAAAAAAAAAAAAAAAAAAAAAAAHHHHHH!!!!

I'm freaking out. However, I'm so grateful to hear from each of you. I've said thank you so many times that it's likely annoying, but you have to understand that I'm a single Mom and really cannot tell anyone about any of this because I think judgement and misunderstanding would just make it all more difficult. Also I promised my kiddo I wouldn't tell anyone. You guys are the only ones who know.

First, Punkybrewter6k, thank you so much. I'm so sorry you and your baby are going through this, but I am also so thankful to hear from you and know we are not alone.

Second, the pole on birth month should really happen....to whomever can make that real.

Last, nbritton, thank you for all of your input and research. It will take me awhile to process it all, but you made various points for us...1. maybe non-psyc work ups are what he needs 2. The medications are a damn disaster. I want to take him off everything to just refresh. It's not that simple though. He'd very likely get kicked out of school which, I believe, would lead him further down the rabbit hole. 3. This kiddo has a ton of factors that lead to the possibility of some type of schizoX diagnosis...birth month, prenatal infection, maternal stress, maternal depression, gestational diabetes, delivery stress, xray exposure, and even just being male. ugh to all of it. 4. We need a childhood psych expert...I hope we can find one!!!

Big hugs to everyone!

P&G

[Sometimes psychotic]

So yeah I would not jump right to sz just because of birth problems etc you have to have several symptom sets for at least 6 months...I mean I thought I had sz because I had very severe hallucinations and delusions for at least a month, I also had problems at birth because it's common, turns out it just went away with proper meds. In addition childhood sz is considered very rare. Let the pdoc dx it but yeah definitely get a medical workup to rule out any sort of medical conditions. In some cases psych meds themselves can trigger psychosis....I wondered about this with ADHD meds since they are stimulants and found the following article....Schizophrenia Daily News Blog: FDA Warns About ADHD Medication Connection to Psychosis and Cardiovascular Events.

I will tell you that I tell everybody about my dx....I didn't really have a choice my parents told the whole family because they were upset and i was like why did you do that...they never told anyone when my sister went to jail for shoplifting. They were like you were in the hospital of course we told everyone....they just treated it like any other illness...that actually helped me see it that way. I've never encountered any bias...people are actually more accepting than you think but yeah kids, kids can be really cruel for no reason I see why he wouldn't want to tell. Perhaps you could get a therapist to discuss this with, it is a huge weight to carry without discussing it and they can help you feel better because you will need to be at your best to care for him.

[newtus]

i agree with SometimesP. i wouldnt jump to the conclusion of schizophrenia becuase of birth problems because them in themselves may not have had such a factor as you may think they have. theres so many causes.

[pink&grey]

I'm definitely not jumping to the conclusion. I resisted my own diagnosis for 7 years!!! I don't recommend that, but I'm also not a fan of adding another label without just cause. I totally agree about the counselor. I think that's why I'm freaking out is because I need to talk it out and can't. I called her last night and she's going to work me in. The stress of the whole deal and my anxiety about what might happen is going unchecked and it's making me ill - which sucks because I was just finally stable and on track. I know she'll help me think more rationally.

Thanks for the link. Every medicine he's been on is on the list. I'm really thinking we need a plan for coming off the meds to see if the voices dissipate.

[Sometimes psychotic]

Originally Posted by pink&grey

I'm definitely not jumping to the conclusion. I resisted my own diagnosis for 7 years!!! I don't recommend that, but I'm also not a fan of adding another label without just cause. I totally agree about the counselor. I think that's why I'm freaking out is because I need to talk it out and can't. I called her last night and she's going to work me in. The stress of the whole deal and my anxiety about what might happen is going unchecked and it's making me ill - which sucks because I was just finally stable and on track. I know she'll help me think more rationally.

Thanks for the link. Every medicine he's been on is on the list. I'm really thinking we need a plan for coming off the meds to see if the voices dissipate.

That sounds like a great plan to me---glad you could get in to see your counselor...Good Luck!