Childhood Onset / Early onset Schizophrenia, help!

Family
1

Hi! My 11yr old daughter has been recently diagnosed with “schizophrenia spectrum disorder and psychosis” - She also displays conduct disorder in the home and also in public when she chooses to. She has all symptoms of schizophrenia. She’s high risk due to genetics on her fathers side. The problem all of our providers on our team cant figure out is, she has the ability at control most of her schizophrenic behaviors and conduct related behaviors when she sees fit. Has anyone ever experienced, heard of, read anything like this? Textbook schizophrenia, textbook conduct disorder, autism, psychosis…etc… but can control it!

Thank you!

2

Does she hear voices or have other auditory hallucinations?

3

Yes and has for several years

4

Is she taking medication? If so, is it helping?

5

She’s currently on Abilify, Risperadol,prozac and Tenex. Its helping minimally right now. She’s currently inpatient for the 4th time since August. She is very violent and the Abilify does help with that but she’s still have hallucinations and delusions. I would say they are getting a little better but not as much as I would like.

6

I think it still need observation (in order to understand the ability) since she is only 11 years old.
And, normally we see two distinct characters before and after puberty. I am not sure though, I am not a mental health professional.

7

As I understand it, all 4 meds are effective in schizophrenia/autism/agitation. Doesn’t sound like there’s much room for upward movement. I came down with the illness when I was 12. I’ve endured so many medication changes it’s ridiculous. I’m actually going in to see the psychiatrist today for another adjustment. I’ve been stabilized in the past, don’t get me wrong, but it required HUGE doses never seen outside of the hospital. I also grew up in the system, and the meds used at the time were equal to whacking you in the head with a sledgehammer.

I understand the desire for quicker response to meds, but with these psychoactive meds in a developing brain, such as your daughter’s, it’s kind of hard to predict outcomes. I do know of an extreme case of childhood schizophrenia that responded nicely to Clozaril and lithium. Both meds can be a right pain in the ass because of a LOT of blood work needing to be done, however. Maybe something to keep in the back pocket? The child I’m referring to was also autistic, violent, and extremely out of touch with reality. Not sure if your daughter has reached that point.

8

I do think we are on the right track as far as medication goes. I understand its trial and error. Her symptoms were mostly controlled until she recently started her menstrual cycle about 5 months ago and she has progressively gotten worse since then. My main concern and the most confusing aspect of all of this is her ability to control her symptoms and behaviors when she sees fit. I don’t doubt her hallucinations, they’ve been witnessed and documented by staff but I was mostly curious if anyone out there who has children with schizophrenia or schizophrenia themselves have the ability to maintain themselves and essentially “put on a show” when you want to? She says that she does this because she doesn’t want to be embarrassed and she also does not want her providers to give her medication to make her “friends” and voices go away.

9

Which strongly suggests that she is not physiologically schizophrenic, but may fall somewhere in the borderline spectrum (see The spectrum of borderline personality disorder: a neurophysiological view - PubMed) and may actually be as bipolar as she is borderline (see Borderline Personality Disorder and the Bipolar Disorder Spectrum - PMC) which is not uncommon in genetically predisposed, early adolescents. But I say all that with a pile of caveats, the foremost being: I haven’t observed her myself.

What I do want to suggest is getting her to a first-rank endocrinologist who can look into what may well be severe hormone imbalances involving cortisol (and all of its downline upshots in the autonomic nervous system), progesterone, estrogen, serotonin, glutamate, GABA, norepinephrine and dopamine… because your description of her strongly (to me, anyway) suggests as much.

Get those back in balance, and then rehab her mind with some combo of the following:

DBT – http://behavioraltech.org/resources/whatisdbt.cfm
MBSR – Welcome to the Mindful Living Blog
MBCT - http://www.ncbi.nlm.nih.gov/pubmed/22340145
ACT – ACT | Association for Contextual Behavioral Science
10 StEP – Pair A Docks: The 10 StEPs of Emotion Processing
MBBT – An Introduction to Mind-Body Bridging & the I-System – New Harbinger Publications, Inc
SEPT – Somatic experiencing - Wikipedia
SMPT – Sensorimotor psychotherapy - Wikipedia

10

Moved to Family.

Pixel
(Wearing moderator hat)

11

Sorry I can’t offer much help, but I just thought I’d add that I have also almost always been able to “hide” my symptoms from others. I may or may not have had childhood-onset schizophrenia - my doc and I are officially going with that my psychosis really got intense around the age of 17, but by the age of 10 I was having “intrusive thoughts” of the FBI interrogating me in my bed because I was getting in other people’s heads. Maybe it was because I experienced these as things I couldn’t help imagining rather than voices, but I kept these experiences to myself for almost 10 years because I didn’t want my contaminated brain to leak. Looking back, I had a lot of the signs of schiz spectrum disorders, but nobody realized then that anything was wrong with me, because, even though I assumed I’d have to kill myself eventually, when I needed to I could pull myself together.

I don’t think my situation is really all that similar to your daughters (even though I too have been diagnosed with unspecified schizophrenia spectrum disorder). I didn’t experience hallucinations in the typical way, and I did not suffer from violent behavior (although I did self-harm). I just wanted to add that it does happen that people can hide schizophrenic symptoms from others, and it doesn’t make their suffering any less real.

12

I disagree that if controlling it is observable it can’t be schizophrenia.

my sister became unwell some time between 11 and 13 and she was always able to convince the docs that she was well.

Like being able to pull your self together for 5 minutes? for an assessment? I think that’s actually the norm.

13

Voices stop if kids do not talk aloud to self usually. Seeing things that are not there would be harder, have to understand to ignore that specific person/whatever. Can have total remission.

I heard it for 6 months as 4 year old (being lured away to be harmed actually). My parent lived near military base growing up and kids in community heard it too, so did my Mother. Dr told them not to talk to imaginary friends or talk to self alone, act normal and problem stops quickly. My parent had voices stop for her too as kid. (This was better situation if you really want to know as the adults near the other military base in the state were tortured so the city military base REALLY did some damage…)

Can try to move to different community for above reason. If you see a lot of kid affected by this problem, it’s your choice.

Kids can be told some really manipulative stuff by voices, even lured away to be harmed so can be hard fight in some places as my neighborhood had voice saying he was God, and some kids were lured away to be molested. Kids eventually knew to ignore the voices living around here, but was 30-40 years ago, cops at time did nothing. Others on this board have this kid of story, won’t tell parents about abuse easily either due to threats from voices. Most of this child abuse has stopped here as child protection laws are stronger, other scams from those days continue.

When my parents understood there was sex abuse problem in area and some of the cops did not care, she got job working as secretary for chief of police in city nearby and had no more problems. Govt jobs keep some of the mental illness and crazy people stuff away sometimes. (Parents tried moving but got ruined…btw…so returned to city to have two daughters.)

I did not hear voices FT until 30 and had nervous breakdown after PTSD from woman I met who was introducing around sex abuser…

Lots of these youngers (under 30) are under a lot of stress to act up due to some psychosis…Passive aggression and tourettes behaviors are good examples…

Went to school with a boy who heard voices then threw a physical fit and yelled his head off in class. Ex-marine teacher had to wrestle him to quiet room in his desk a lot. Could be possible to easily do some humiliation training to see if he/she would be interested in acting like the others, he will make a lot of money and like his life better. Others don’t act like this. His/her choice? But with some churches telling theirs to mistreat people voices demand such as harass local mental illness victims who took SSDI when local jobs ruined women who were alone, who know what the kids were being told as I went to kind of odd church as kid with no one really teaching the children anything approved only the pastor’s son left to it and some is ‘interesting’, later objectionable. Lots of the churches here have moved past verbal harassment to screwing people at work, customers, own family who got mental care…Who knows what is going on and come out of kid’s mouths at school? Have to establish trust with kid, reassure no need to discuss this with classmates and only repeat their chatter to you.

Finishing school and quiet time would be nicer life.

14

Want to add, if you just moved there sometimes you move into a bad abuse situation, similar to what I described and new family that doesn’t know anyone is target. No one else will even speak up they are broken in so good. Watch things over next year or two to see what happens to others who just moved there, if it looks like sex abuse town you want to just leave for a place where you already know someone.

Leave a situation like this and go to new place alone, and the nuts may wreck you worse. Some cities are really unsafe for women traveling without relationship due to all the scams, I would stick to place where you know someone or you did a lot of networking to meet people (plus have enough money to take some hits and leave if you need to).

You may find a healthier place for your daughter. Do be aware some people are timing loud noise with flashbacks from soldiers PTSD and even step outside and shoot off gun in city, country, suburbs. Expect anything and don’t react…No response is no fun and they leave you alone quicker imho.

Best of luck to you.

15

Thank you to everyone who commented. I found the link to borderline personality disorder very interesting. Her doctor changed her diagnosis yesterday from unspecified schizophrenia to child onset schizophrenia and conduct disorder. We work with one of the best child psychiatrists in our state and as long as she’s being treated with the proper medication I’m not concerned about labels. She’s so young, there is no telling how this will unfold. But I do believe that she does really have the beginning stages of schizophrenia. I also think that things aren’t always cut and dry with this disease. We really don’t know how the brain works. It could be her voices telling her to control herself, we just dont know. That doesnt make it any less frustrating but as long as her symptoms are being controlled with the right medication, the name of the disorder doesn’t mean much to me right now I’ve decided.

Another question. She’s been in therapy for years now. Its not effective, even when she is stable. I know from what I’ve read that therapy in general isnt very effective but as a parent I feel like therapy is a must. I want to make sure I’m doing everything possible to help her. I dont want to look back and say well, " I should have done this". Aside from medication, individual and family therapy… what else should I look into? Are there any other treatments out there that might be beneficial that I don’t know about?

16

It might be worth looking into possibly a residential treatment center that specializes in childhood disorders. They’re fairly expensive, but they can and do help. I don’t know if your daughter’s case requires that, but if she’s had multiple admissions over the past few months, it might be an option worth considering.

17

Yes, residential has been suggested. I’m going to try to keep her stable long enough to make it until summer time. She’s missed a lot of school this year. I’m currently researching different residential facilitates in and out of state. I was told that a university hospital might be a good choice since they are teaching hospitals, the doctors might be a little more open minded and have new ideas.

18

How long has she been in therapy and why was she just recently diagnosed?

19

I can add a little advice that hasn’t been covered by other very good posts in this thread.

Make her learn about what she has. There are videos, educational ones easy to digest like TED talks and the like, even graphic novel info graphics or whatever they are called about schizophrenia- probably go with the little comic book style things and videos for her dose of what is called Psychoeducation.

This is basically when someone with a mental disorder or psychological condition or frankly problem is told what is going on, what they have, what they can and can’t do about it, and what to expect. It ranges from videos and info graphics for kids to degrees in psychology for adults like myself.

I think it is great, I even wrote a research paper on it as an intervention for medicated patients with schizophrenia, and well I have experienced the technique, it is a form of therapy, and I swear by it.

Again, it’s up to you as to whether you should get her to read books like Surviving Schizophrenia and also The Center Cannot Hold (the best autobiography about a successful life with chronic schizophrenia) or whether to send her to NAMI workshops or to just expose her to informational comics and YouTube videos.

Just make her realize that she is far from alone. Then she becomes what we call sane- aware of being crazy and therefore technically not crazy.

Even at my worst I know to just take care of myself, go lay down, and to take meds and eat and shower and groom and such. It’s because I know too much about what is happening to me when I have psychosis flare up, before I was aware, I was a big problem.

1 Like
20

She has been in therapy for 6 years, both individual and family therapy. We’ve had several different therapists over this time. I’m happy with our current therapist. She was recently diagnosed with early onset because of the amount of time she’s spent inpatient since August. We are currently on our 5th hospitalization. So our providers have been really able to get a good idea as to whats going on with her since she has spent so much time with them the past several months. She’s had multiple diagnosis’s since she was 5. Autism,OCD, ODD, PDD, ADHD…etc. But I think now that she’s older, they are narrowing it down a bit. She’s been having frequent episodes of psychosis for 3 years now, but around August is when we really saw a change. It was no longer episodes, it was constant. Continual negative and positive symptoms. No break.