Good morning. We really need your help - Childhood Schizophrenia?

I also wonder if the adderal are the right meds My son tried it only once and broke down just sobbing and raging he was six and we have never used it since He is also on the spectrum now with psychosis Do not be afraid to tell the effects of the meds to his doctor even its they are negitive as it can help them with the diagnosis Best Regards

I belive too that you have change Adderall to something else.

As a doctor I can’t say, but I want to commend you for being such a wonderful parent! I have wonderful parents too who got me help the second they saw warning signs (ausburgers in this case). I have always had major depression, but because it was always there and I learned to read, walk, ect. normally everyone thought I was just a gloomy kid. I was deluded into thinking that no one loved me and so I never talked to them (I think they are in some sort of denial about the depression. Not the sza though… strangely…)
Just don’t waver. I lived with the depression (and what was later diagnosed as ausburgers indicators) for probably about 15 years. Modern medicine+ caring receptive parents are the greatest of gifts. The difference in my life now that I have the meds and can talk to my parents is astounding. I am in college, I am engaged, I am happy. All because of my wonderful parents. Parents like you. I have seen that a Mother’s love is the greatest thing in the world.
As for any practical advice I could give- read Temple Grandin’s “Thinking in Pictures” (the movie is her story, the book is all about autism/ausburgers. She has it herself so she knows what she is talking about).
Also, have you tried to teach your son music? Maybe if he could replicate the tune with his fingers (like on piano or violin) he could get it out of his head. I used to write poetry and the words were very insistent. They didn’t usually torture me the way they are your son, but I just wrote them down and went on with my life. Maybe check out Ronald Jenkees. He is a famous artist with autism. His songs are really good. He has a keyboard and just does his stuff. Maybe he has a hidden talent in that area?

Thnaks guys. Tomorrow is the appointment with the psychiatrist. I’m so nervous and I feel like I want to throw up. Wish us luck. Very scared.

Hi,

I wouldn’t place too much importance on a single visit or single psychiatrist. Our family, like many others, ended up working our way through a number of psychiatrists and psychologists before things settled out and we got good treatment. Just be persistent in making sure the problems / symptoms are addressed.

Hey guys. For now the psychiatrist is saying that our son experienced a very bad reaction to the drug (adderall). That coupled with his autism and obsessive thinking sent him over the edge. No sz for now. I don’t know what to believe but I figure I’m doing all I can to get answers.

Our son isn’t talking about it as much anymore and I take that as a plus. Not sure whether he’s censoring himself with me now. He never did before. I will continue to update you as we take this journey. Thanks to all who’ve listened, replied or even just lurked. It means the world to me.

I’ve heared of more kids and adults having hallucinations on adderall, ritalin and concerta. I got an adhd dx when I was 25. I’ve been on lots of adhd sites. Maybe you should look at some adhd and autism sites too. You will get a lot of information on meds and strategies to cope with your son’s disability.

Hi HelpinNY, My 7 year old son hallucinated strongly and was diagnosed initially as having childhood schizophrenia, then when we took him for a second opinion, the second physician took him off the Ritalin he was on for ADHD, saying that was causing the halllucinations. He lost half of first grade in the interim because he quit talking about his hallucinations. But he now tells us he doesn’t have that awful music in his head and those echoing voices. He is on 0,25 mg of Resperidone - a very tiny dose - and his primary phisician agrees that sometimes antipsychotics work well for ADHD. I find him a little better organized in schoolwork, but he’s still pretty ADHD at home. Nobody’s complaining at school, though. I have also caught him having an occasional hallucination, but he just tells me he has much better hearing than I do and I just didn’t hear what he heard. Naturally I’m following up, but nothing is as devastating as it was when he was on Ritalin. All I can say is, all kids are different, and they all respond differently to medications. Bless you and I hope everything goes well for you. We all hate to see our kids suffer.

I’m so happy to hear it! Sz is liveable, allows for growth, ect. all that stuff is true. But not having it is better than having it! Goes for a lot of things the flu, a cold, ect. Just keep an eye out and make sure it’s really a drug reaction not remission!
Wishing you lots of love!
(Oh, have you ever been on pintrest? They have some good education exercises, fine motor, sensory, basic math, ect. I don’t know if you are interested but it’s a free site and they have pictures of kittens too!)

I don’t think he’s censoring himself. From the outside looking in, when I just get over an episode, I can’t really talk about it for a while. There’s processing time and if I keep talking about it, I scare myself all over again. Plus if the episode is more then a day or so, my brain has to digest it and when I do talk about it,… the event comes out little pieces at a time.

He’s 10 and it sounds like it’s been one hell of a time for him. He’s probably still a bit in shock wondering what in the heck just happened up there in the gray matter and how in the world does one even explain it to others.

This is a trap my Aunt used to fall into. She would try and convince my Mom that I was being secretive and self censoring and trying not to upset everyone… She was crediting me with advanced self censoring, planning and after thought and empathy at 7 years of age. I don’t think anyone is that emotionally advanced so young.

I wasn’t being self censoring… I was too confused to self censor. I just had no idea at all how to communicate what just happened in my head. That is when the therapist acted like an interrupter between my parents and I and gave me some language I could use to describe the scrambled egg car crash that just happened to my brain.

It is hard to put symptoms into words. If someone is describing a delusion, it’s probably easy to get the gist of what is going on, but it might be harder to find proof to show them because they might not acuratly be able to describe the delusion or feeling.
I have a really good psychiatrist but it wasn’t until someone (I think it was C) coming up with the common phrase “cotton in my brain” that he understood what was going on. I was using a water metaphor. To me it was like my head was being held under a running stream, I couldn’t really hear, see, or sense anything. I mean I COULD which is why I could walk around and complete tasks, but my brain wouldn’t really process it in any meaningful way. I couldn’t come up with a good description of what the “head under a stream” was like. I just kinda kept repeating the phrase.
Maybe you could work with your son to help him put more and different (more commonly used phrases and words) to his symptoms. If the psy doesn’t know what they are talking about or thinks it’s a very minor symptom when they are wrestling with something bigger they might not really pay much attention to it or know what to do about it. Or he might think he just needs to up the dose because what he thinks he hears is treatable by the meds he is using.

I was not medicated until I was fourteen. I had not displayed symptoms until then. Some of it was stress related. I believe depression triggered my first symptoms alongside persistent mania.

My first symptoms of mania or psychosis was the inability to shut my thoughts off. They kept racing and racing. It was not induced by any sort of medication, but some say vitamin deficiencies could be a part of it.

I’m exploring Lithium Orotate and 5-HTP as an adjunct to my current medication.

I also exhibited symptoms of high intelligence at a very young age, but it tapered off over time so I am no longer as bright or high functioning as before. My short term memory has suffered due to the illness.

Stimulants actually have helped a bit but I’m 25. I don’t know if stimulants would have helped me when I was younger, but I sometimes wonder if it might have prevented by crash into depression. Being that I have more of Bipolar or ADHD than schizophrenia alone.

I’m not a doctor but I also suspect that maybe your son is just sensitive to stimulants. It’s common for some children to develop mania or psychosis due to stimulants affecting them. If he’s hyperactive u might want to try a different ADD medication that is less activating. Good luck!

I was also brighter when I was younger, but then again I read a lot more. Science stuff like string theory. I could understand the theory but not the math. Now I read things like “The Bay” by Katherine Mansfeild (an Avant garde story) to help with my writing. I guess I am still learning, but different things.
Maybe I just had grandiose delusions when I was younger?

Dr. Rappaport is my child’s dr. She is the lead investigator at the NIMH, which is the number one research hospital in the world. Call the NIMH and ask to speak to Diane Broadnax. She’s the one that does the screening to see if your child qualifies for the study. My child was diagnosed at age 8. No drs. Knew what was wrong . I diagnosed her and convinced the drs. That is what she had. The NIMH is the best thing that has ever happened to us. The group of nurses and drs. Know a lot and they really get to know your child. They have only found 100 children and 3000 have come improperly diagnosed from outside drs with early onset schizophrenia. What is wrong with our system?

Oh she was around alright. She graduated from Harvard in the 50s . She’s around late 80s or early 90s and she’s still sharp as a tack.

Just my two cents…

I showed signs of something strange since birth. The ways I focused and communicated were said to be abnormal but not “bad.” I began getting psych symptoms at age 8 and my first psychotic symptoms at 9. Things progressed from there and my diagnosis was set when I was 17.

I turned 32 this year and have had it with the treatment I have been getting. I’m traveling to see doctors at a major university medical system and things are finally looking up in terms of finally finding a competent doctor who is investigating everything. More and more you hear about conditions that can cause psychosis and are more likely to hit kids than schizophrenia. I’m not saying kids can’t get it, but it is pretty rare. There are a lot of neurological conditions that are easy to overlook. In my case, the psychosis and other behavioral symptoms were so prominent and scary to parents/doctors/teachers that a lot of increasing physical symptoms/possible cues were either overlooked or attributed to a mental health condition. I am now being evaluated for autoimmune encephalitis - something that left untreated could have caused my schizophrenia. It’s something no one was really aware of when I was growing up. It’s been determined that I have some underlying neurological condition - tbd.

Can you take your son to a neuropsychiatrist? Is there a major medical system you can go to/travel to that can do a work up on him with doctors in a variety of disciplines? A major medical system is really the only way you are able to effectively coordinate care. If your son is determined to be schizophrenic based on just a psychiatrist’s diagnosis it could lead to complications down the road. The medications that would be prescribed are hard for an adult to handle, let alone a kid, so it’s important to make sure the treatment is as safe as possible.

I know everything is completely overwhelming, but I would urge you to get a full system (even genetics) workup before trusting one doctor to care for your son. Even if you can rule out a lot of physical triggers/causes of psychosis it can provide peace of mind. There are even dietary triggers that can affect behavior. There is a lot out there to read up on. I know they are finding links between gluten intolerance and celiac disease to schizophrenia. Some people will say it’s just a crock, but I have learned in the last 2 years that I am in fact unable to tolerate gluten (celiac couldn’t be confirmed for sure) and I have noticed improvement from eliminating it from my diet.

Antipsychotics can be very effective, but they come with a price. Even if it is determined they are the best line of treatment for your son, there are things you can look out for to make sure he has the smoothest experience with them. It’s completely worth it to look into every angle - even if a psychiatrist tries to sway you otherwise. I’m speaking from experience. Find a team who will evaluate him and communicate their findings to on another.