Family and Caregiver Schizophrenia Discussion Forum

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

Yes, his first identified psychotic episode was at age 17. This means nothing in regards to your son, but just shows that sometimes there are manifestations in childhood, and there can be some dual-diagnosis with autism

Hi,

In addition to your regular pdoc - you might take him in for evaluation at an early psychosis center that specializes in this type of thing.

I recommend you contact one of the centers listed here that is closest to you and (if there none really close to you) then ask them for a recommendation of another clinic like theirs closer to you.

These centers are specifically set up to help people like son as early as possible.

http://www.raiseetp.org/sites/

Here is another list of Early Psychosis Treatment centers - call them also if there is not one listed above that is close:

http://www.schizophrenia.com/earlypsychosis.htm

Thank you for the list. I sent an email to the closest hospital.

Links fixed - sorry, they probably didn’t work before:

http://www.raiseetp.org/sites/

Here is another list of Early Psychosis Treatment centers - call them also if there is not one listed above that is close:

http://www.schizophrenia.com/earlypsychosis.htm

Lol. That’s ok. I used the link and went back to the main site and found mr way from there. The closest center is in Long Island. We were thinking of taking him to the children’s hospital in Boston if we can get a referral.

By the way - This lady is widely considered the number one expert in childhood schizophrenia (it is very rare - so most psychiatrists don’t know much about it). She also does a lot of research on this topic and so has free programs for children. You might contact her, and see if you can get recommendations for doctors in your area, if you can’t visit her:

Judith L. Rapoport, M.D.

http://intramural.nimh.nih.gov/research/pi/pi_rapoport_j.html

I see this as more proof that things are getting better for us. My Mom and Dad would have done every thing they could to see this lady if she was around almost 29 years ago. Thank you for posting this.

I do know that schizophrenia can be detectable even in our childhoods regardless of how old we are when it fully develops. Him having austism is very problematic, it does make communication difficult, but an evaluator will be able to find out what is going on.

For example, outdated psychiatry blamed schizophrenia on childhood experiences and even parenting styles. There is a grain of truth, but only in the sense that symptoms may be there at times in childhood, and the concept of schizophrenia as being developmental is long gone, it is now a purely neurologically blamed disorder.

Again, an evaluation sounds necessary, I had an unusual set of symptoms and behaviors and it took a formal evaluation to diagnose me- I was seemingly together, sharp-tongued, witty, doing well in college even and physically fit, but upstairs in the dome, stuff was all over the place. I turned out to have an unusual case of very high positive symptoms and quite low negative symptoms, mainly introversion, which isnt even pathological normally, but given that I was completely extroverted before my onset, it qualified as a negative symptom.

I went from being friends with everyone and being the ringleader to sitting at home alone or with one old friend at most, and he accepted me because he himself has a heart condition, has had multiple open heart surgeries and even has a pacemaker. He knew I was mentally ill and saw the human side of me, not the paranoid schizophrenic side of me. He could tell I was suffering but was good at faking being normal.

What I really mean to illustrate is the value of a formal psychological evaluation. Mine left no stone unturned and now I know virtually everything about myself, even the tiniest little details that I never even thought about before. Some of it was unsavory, some of it was just dry factual information. Be ready for surprises…

I spoke with Charlotte Armstrong at NIH. She referred me to several lists. I then spoke with a great person by the name of Melinda at the Feinstein institute here in NY. She said she would get my info to the right folks and someone should contact us. We have yet another appointment tomorrow with the new psychiatrist. I think he’s going to help us. Thank you all. I will keep you up to date. Xoxoxo to you all!

Hello all. The new psych said he does not think our son is exhibiting signs of schizophrenia. I sent him back to school today (first time in a week) and got a call around 1:30. He had a good morning but had trouble after lunch. He said he heard a song in his head and he couldn’t stop hearing it. I went to the school to get him and he was very weepy and sad. I brought him back home… so far so good but he is still talking about the music that gets stuck in his head and that he can’t turn it off.

Any ideas or suggestions would be greatly appreciated. Going back to the dr. again on Sat.

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.