10 year old daughter diagnosed with Schizophrenia Spectrum

[amandabethj]

10 y/o daughter diagnosed Schizophrenia Spectrum

Anyone have a child with this diagnosis? She just had her first episode of psychosis which resulted in inpatient hospitilization on 5/9.

Went in with auditory hallucinations x 8+ weeks that became more hostile and self harm in the form of biting and hitting herself. She was released on 5/20. During her stay she was removed from her Ritalin (ADHD) and Zoloft (ANXIETY) and placed on SEROQUEL. Auditory hallucinations slowed WAY down and became much more infrequent, however we added at least three documented times of VISUAL hallucinations while inpatient.

Since coming home Friday she has had daily paranoia, accusing her step dad of throwing away her video game, accusing a neighborhood porch sitter of always staring at her and only her, and a total breakdown Sunday evening when asked to sleep in her own bed. She was hysterical and convinced someone was going to break in and kidnap her, she would never see me again, I didn’t love her, want her around, etc. Very quick to anger with siblings. Just overall seems emotionally volatile.

She also relayed to me that auditory and visual hallucinations are still occasionally happening. My question is… should I take her back for re evaluation? Should I give the medicine more time?

Tried to take her back to school yesterday at their demand. She didn’t want to go and I didn’t want to take her… she made it until 9 am. Dizziness, extreme sleepiness ( anxiety response?). Just looking for some insight. Thank you.

[Hereandhere]

For adults with hallucinations, the advice I have been given is that sometimes they don’t go away even with effective medication. It’s about management and coping, but I really don’t know with children.

I would call the doctor’s office and ask these same questions. Request family education, which is a part of many treatment plans for children and would be at least a session or two with a social worker, counselor, or psychologist familiar with your daughter’s diagnosis and treatment.

Good luck and all best to you.

[myson]

I am very sorry you’re going through this with your daughter. The advice that @Hereandhere has given to you is a good advice. I would add that you get a second opinion and have them to run tests to rule out other things that can cause those symptoms. I’ve only dealt with my adult love one, so I couldn’t tell you much about children, but your daughter have similar symtoms as an adult with Sczo. Be bless and good luck to you and your daughter. Keep us updated!

[Jacquie]

I have an 11y/o that was recently diagnosed , she is doing so much better with Risperdone … and we are trying to get her in a program that deals with children who have early onset schizophrenia. That deals with all the aspects. I’m looking forward to September.

[a_s7002]

My son (14) was just recently diagnosed with schizophrenia spectrum also. He is 14 but has been showing signs for years. He is doing better with risperdol, abilify and Zoloft. I am constantly worried about them prescribing too much medication because of the side effects. I hope your child can find the right combination of medication to help.

[Squid]

I’m new to the forum, and your post is from May of 16.
How has school worked out for you both? Especially with the meds?
Son has been dx with Early Onset, is on Seroquel, Sertraline (zolof), Clonidine, and Hydroxizine.
Basically he is asleep.
And almost 14.
And has gained a tremendous amount of weight.
There is no school…well home school and psych visits.

[TAG]

Hello Squid. You mentioned that there are no schools for your son. Has your son been evaluated for special education? If he hasn’t, he should be. Public schools are required to provide a free appropriate public education for all children, regardless of illness, disability, behavioral concerns, etc… If a local school division is unable to meet your son’s needs, they must find a way to serve him and that could mean that they pay tuition for private therapeutic school, home based education where a teacher comes to you, a special class or other alternative. You can find more information by visiting www.wrightslaw.com. I work in a public school for kids with mental health issues and behavioral issues in a large suburban area…just fyi

[Squid]

We had him tested and enrolled in another state for a year of middle school. That situation that resulted is a long one and although interesting, was not successful. Hallucinations and suicide attempts x3 in one year, age 12/13. (He is now almost 14yo.)

The dr then recommended that a teacher be sent to our home twice a week for several months and was quickly approved. The teacher was great, but did take notice that (which was validating in a sad way) his medications were very sedating and he has an extremely difficult time with school.

She brainstormed ways in which he can learn most effectively (for him), and this helped a great deal. Using a television screen instead of books, using a keyboard instead of printing, utilizing web based programs instead of printouts, etc. These are certainly much less stressful ways for him to study.

We’re in LA now…they told us last time we lived here that their schools weren’t really set up for him. This time they say that they might be able to fit him into their autism like programs.

Please note: husband and son are against this. Husband doesn’t want him “stigmatized”, and son doesn’t want “the lights” in the classroom. Husband has a good point in another area: our son is the sweetest, most tender hearted person. He truly does not want to upset anyone. Husband is concerned as to what behaviors our son will be exposed to, and may possibly pick up and make his own. Son remembers being mainstreamed, but also that he had two classes a day with special ed. The other classmates were a real issue. It doesn’t help that son “falls in love” and begins planning on wife and family with a certain girl, and then begins to struggle with this reality. (He’s still in his very early teens!)

Dr wants him to undergo more extensive testing through the hospital to determine developmental delays, etc. They team wants him to settle after our recent move (again), undergo testing (which they suspect will be very stressful as finds his dr visits stressful), and limit any other stress.

Okay…check.

The message I’m getting from everyone involved (even teachers) is that public school/modified public school is too much for him. He’s pretty flat in affect and emotion until stressed. STRESSED…and that’s all it takes for some of the most horrendous hallucinations to begin. The stuff he “saw” and experienced was scary for everyone at his last school. (Can we mention the things they “see”? They are upsetting to say the least.)

He qualified for special ed, but they wanted him mainstreamed (I used to work with the disabled, so I get the paperwork, etc.) Now they say it’s too much, unless I really want to push it.

I feel guilty, because after what happened last time, I (for the first time am admitting this) really don’t want to push things. I worry for his future though without formal academics. Then again…what future if he’s so stressed that he doesn’t end up having a future?

I think I just started a new subject. Apologies if I’m supposed to put school dialog in another place.

and…THANK YOU!!

[Hereandhere]

I think it would be so good if kids can go to school for them to try. Because they can always stop. My experience with my family member’s peers is excellent. They are real friends to our whole family.

Being in a classroom is like practice for the real world. Coping mechanisms can be developed. It’s also a good way to get testing and services and an education plan that can extend past high school.

I used to work in a “special ed” classroom and the kids were all unique; none seemed to pick up negative behaviors from each other, but they all cooperated and learned together at times. There were a couple crushes since this was middle school, but those became learning opportunities too.

I get it if it’s too much stress for the student, but a satisfying social life is one huge element of recovery, if school can support that for the individual.

[Author_Charity_Marie]

I am fascinated to know more about your experiences (that sounds horrible but I don’t mean it to - I’m just in a very similar situation with the medical process). You should also see the thread called To young to deal with this when you have time. Three others on the forum have children around age 10 but all diagnosed with major depressive disorder w/psychosis and generalized anxiety disorder. I live in Texas and have been unable to get to what I believe is a proper diagnosis of paranoid schizophrenia. We’ve been discussing topics related to younger children with these kinds of severe symptoms and mental illness.

It sounds to me like she needs to be readmitted, and is too unstable for a home/outpatient situation. I would push on that and let them know you’re worried about her safety so they take it seriously and readmit her. My daughter is in a mildly active but manageable phase where she’s having hallucinations and paranoia with some mild mood disruptions and I’m tracking that. She’s not unstable currently but I’ve emailed the psychiatrist’s office along with a log of her symptoms because I’m seeing rapid deterioration.

The emotional volatility is really a slippery slope because you never know when they will fall all the way off the edge into crisis or what will trigger it and be the final straw. For my daughter school is her #1 trigger, and she returns next week. I can’t believe they released your daughter with documented hallucinations. Was it due to insurance or some facility policy? I know for our local hospital if they tell the insurance company she’s exhibiting unstable symptoms or a recent med change, that will allow for authorization for a longer stay. My daughter was admitted on 12/15 and released 12/23, initial authorization was for 3 days, then another 5 after that. If you are with BCBS for insurance, they should assign a Case Manager that you can communicate with for help with the authorizations (at least, mine does here in Texas). The facility may have had no option but to release her. I would call the facility and ask to speak with someone in Admissions. They could have had a more critical case come in and needed the bed so released her. If you know her therapist from her last admission you can try reaching out to that person and explain the situation for an internal advocate who knows your daughter a little better.

Are you keeping a log of her symptoms to present to medical personnel? I find that helps with admissions because it puts it in black and white. I color code mine with red for the symptoms so it hits you in the face when she’s very symptomatic. Even in black and white, it can make it obvious when she’s in crisis. That may not help you now but if you don’t have something like that, I’d start now and go back a few days (as far back as you can reliably remember) to provide a reference point for yourself and medical staff.

I hope it helps, please keep us updated with how things progress for you! I’m here if there’s anything I can do to help.

[Author_Charity_Marie]

Okay, I goofed. The original post is from May 16. Oops. Sorry

[Author_Charity_Marie]

The message I’m getting from everyone involved (even teachers) is that public school/modified public school is too much for him. He’s pretty flat in affect and emotion until stressed. STRESSED…and that’s all it takes for some of the most horrendous hallucinations to begin. The stuff he “saw” and experienced was scary for everyone at his last school. (Can we mention the things they “see”? They are upsetting to say the least.)

@squid I am just beginning to tackle the school issue for my daughter (who has dyslexia along with SZ) so I find this very relevant to our situation. We could probably write a book about that topic and all the uncertainty involved! School triggers severe anxiety in my daughter but she also loves it so it’s a double-edged sword. She needs the social interactions she can’t get anywhere else but it makes her symptoms worse. And right now she still believes she’s a ‘normal’ girl and wants to do the same things as everyone else so I’m walking a tightrope right now on giving her as much normalcy as she can handle while avoiding triggers and making symptoms worse. It’s a fine line to walk for sure! (Also, I don’t think there’s anything against talking about hallucinations - if there is, I’ve already broken it more than once and I’m sure someone would have pointed it out! I think the rule of thumb is what you’re comfortable with - some people have family members who are able to navigate to forums and could recognize themselves described so prefer to keep it neutral. My daughter’s not capable of that, thankfully.)

My daughter is also highly stressed by school. I think if you’ve exhausted every special ed accommodation the school can give as well as modified school, that you’re a bit stuck with it being what it is. Have you discussed this with the psychiatrist? Maybe there’s a way to modify his medication to reduce the zombie-like effect? I know for my daughter, Lithium and Ritalin created that effect but when they removed it, a lot of her cognition returned and another med was more effective. I’m finding the pharmaceutical side of all this to be very experimental, and even subtle changes can have an effect.

Another approach you might take is having him evaluated for disability due to the SZ diagnosis? If the meds can’t be altered due to the severity of his symptoms, and he’s not capable of functioning in that setting, does he need a disability status to protect him (and you) from legal actions like truancy, etc? That way he can do what he’s able to do (whatever that may look like) This would also protect him in the future from having to try and function in a career or trying to meet that expectation.

As for the stigma, you can’t control what other people do or how they react to your situation, and your son shouldn’t have to suffer to protect other people’s feelings or to avoid making them uncomfortable. All you can do is step in and advocate to protect him if and when that happens, but if we all tiptoe around the issue then the stigma will never be removed and will continue. I find that part exceptionally hard but have gathered my courage and voice, and am working to speak up against the stigma whenever I see it (and it happens often, unfortunately). At the end of the day, it’s about what’s best for him. (I’m not sure what “the lights” mean.)

My daughter also has delusions around romantic relationships with classmates which just started recently. That’s a really scary area as well! I’ve warned the school and the teachers to watch out for that and so far it’s been okay (but she’s only 10 so that minefield is likely to get worse rather than better for us).

[Squid]

@Author_Charity_Marie

Another approach you might take is having him evaluated for disability due to the SZ diagnosis? If the meds can’t be altered due to the severity of his symptoms, and he’s not capable of functioning in that setting, does he need a disability status to protect him (and you) from legal actions like truancy, etc? That way he can do what he’s able to do (whatever that may look like) This would also protect him in the future from having to try and function in a career or trying to meet that expectation.

That’s what they are aiming for. Truancy I thought would be an issue…it was in the state of UT and they sent out CPS with the police! Fortunately he was just dx by our dr (one which we were already visiting as a fam, and I was personally working with). The dr heard about CPS and faxed immediately to the school to halt all actions. He ran interference after that. Other schools begged me to take him home, and as often as necessary. He missed so much…every day I pushed him into school, and I would end up being called within several hours. They loved him…he truly is sweet, but then the psych breaks. Especially in regard to food, or the bathroom.

They (according to son):

• Fed the kids human remains instead of real food.
• Someone was killed with a knife and left for dead in the bathroom on the toilet.
• The sinks are pouring blood out, not water.
• The girl said hello to someone else, and laughed at him.
• The teacher told the other kids he’s not smart.
• The other teacher is not good, and is a threat. She’s dangerous. (That teacher called an emergency meeting and asked for him to be transferred.)
• The lights are the lights in the classroom. They burn and blink and make everyone angry.

He tried to be so good, and embraced school. The crying and fear broke everyone.

[Squid]

@Author_Charity_Marie

I live in Texas and have been unable to get to what I believe is a proper diagnosis of paranoid schizophrenia. We’ve been discussing topics related to younger children with these kinds of severe symptoms and mental illness.

Side point: we were in TX right after he was suspected of his dx in UT. We also found out that TX ranks lower than Guam (at that time) for psych care! Hence, we located a Dr who specialized in this field, cost more (even with insurance) but it worked better for us.

White Rock Lake area. We were swamped with medical bills and I think the phone attached to my ear when it came to working with insurance! He was dx there after several months, beginning the “finding the right medication” path. We had an overnight at a hospital, after an ambulance transfer to the Children’s Hospital.

I’ll see if I can find the drs name…as we found the hospital to be, well interesting.

First med tried created a huge psych crisis. The hospital called all the students drs to the ER, and they did one of those things you see on TV (ala "House) where they asked the students questions about scz.

Each one stood in awe…commenting how they see this with young adult men, but never children. How cool is that? NOT!!! I remember this, as son was screaming about why do they need a chain saw to open his head? He saw the chainsaw…they talked about how interesting this was…as obviously there was none.

The Dr wasn’t pleased as this hospital said that our Dr did not exist. We ended up at Children’s Hospital where I laid on a cot next to son who didn’t want to be let go of. He was 7/8 and came so close to being hospitalized that night…alone. The Children’s Hospital was wise…observed him and tracked down our Dr, who did exist. Medication was Saphris and something else.

I learned a lot that year.

[Author_Charity_Marie]

Oh that’s so sad that school began to feel dangerous to him. My daughter has been having some of those issues as well especially in the last year, which breaks my heart because she loves school and wants to learn but this illness is ruining that for her too. Here’s a short list of some of the most recently identified issues for her.

• Believes three girls beat her up in the school bathroom but no one would believe her
• Believes that kids at the bus stop steal her backpack
• Believed that she had a boyfriend and then that he “cheated” on her with another girl
• Frequently hallucinates multiple characters, both human-like and otherwise. She also hallucinates about wolves, werewolves, and ghosts or spirits. One of her best friends (hallucination) is a girl named Lulu who is missing both of her eyes.
• Has paranoia that people are going to kill her, are talking about her, staring at her, and are out to get her.
• She has a hallucination that there’s a boy in the neighborhood who regularly attacks her when she’s outside.
• She hallucinated a man driving a van was going to kidnap her
• Believes that unicorns, dragons, and vampires are all real but no one else can see them but her
• Frequently has hallucinations and delusions about nuclear bombs, atomic bombs, natural disasters, and death. Often involves family members and pets.
• Has a lot of delusions about being bullied, people saying things they don’t say, and scenarios that don’t actually happen. She hears people say things when they aren’t even speaking and says she can hear their thoughts like they’re speaking to her directly (even when their lips aren’t moving). I’ve actually seen this myself and even as her mother, it’s weird and freaks me out sometimes if I’m not careful. I have to be really careful about my emotional responses to her now or I will be triggered, especially my PTSD.

A lot of her delusions and hallucinations mimic realistic situations and seem possible or realistic. It’s taken me three years to learn they are hallucinations and delusions because of them being real to her!

I actually just talked to Libby about the bathroom and she says she doesn’t like to use the bathroom and doesn’t flush because she’s afraid to flush and wake the “spirits” in the toilet, that they will pull her down into the toilet and she’ll never see us again. When I asked her how long she’s thought that she said, “always”. I think we just uncovered the secret to the toilet issue and her potty training problems. That puts her issues starting at 18 months.

My god, we’re still peeling back the layers of this. She’s been afraid to talk to us for the last five years about all of this. The meds seem to be helping her to be able to talk about it now, which is giving us insights into her mind that we’ve never had. I took your idea and showed her a Youtube video of how toilets work. I’m not sure she accepted it - she said it made her uncomfortable so I just let it go when she changed the subject. Hopefully, with time it will help her.

It just goes to show this illness can take them anywhere, in unpredictable ways.

I lived near White Rock Lake for about a year before we moved to Central Texas. Libby was admitted to Sundance in 2015 for the first time. They helped her but didn’t go nearly far enough (not that we knew it at the time). I too have heard that her symptoms are more those of an adult than a child (and have been for five years). One cop told us we needed to spank her more when we called for help because she was trying to run away at Christmas because no one would listen to her and no one understood her. Now, I understand what she meant and she was right - we were clueless.

Libby was the youngest in the hospital during her stay which made it really hard to treat her. If I had known, I’d left her there longer but we were told it was just depression and they sent her home. For a while, she seemed to do better. Little did I know it was masking what was really going on.

[Jan]

Good Lord! What an ordeal you had in the hospital–with your phantom doctor😊 But I guess we could all write a book about ER visits w our mi loved ones. I know I have had some rich experiences at hospitals.

FYI: The treating physician is supposed to ask you before bringing in residents to observe your son.

[Squid]

@Author_Charity_Marie

Frequently has hallucinations and delusions about nuclear bombs, atomic bombs, natural disasters, and death. Often involves family members and pets.

Yeup!! He also refuses to travel if he has a “feeling”. We move ALOT due to my husbands work.

We humored him once, as he had just gone through a tough period and husband had been in another state for months (work related). I called husband and told him that (our son) had some concerns. The trip across several states had been planned to the hour, as I would be driving alone with the children. Son wanted to go any day BUT the day we planned to. Husband told him that it could be moved, and to sleep easy on that subject. Guess what? Remember the tornadoes that wiped out OK and TX a few years back? It was that day! We drove past the damage the day after. He wasn’t smug, as it was so very real to him. He said he “just knew”, hence it wasn’t anything to fuss over. As long as we didn’t go that day.

This was during the same time period that he had to DRAW designs all over his arms and hands in order to go to school. He needed their protection, but couldn’t or wouldn’t explain further. The designs were mind blowing, intricate without any tangible source of inspiration. (Very much like the Native American artwork.) Everyday…for hours, with permanent ink. He would make paper bracelets with the same designs to give to us, and a cute girl at school he intended to marry…all for our protection. That was…hmmm, fourth grade. He hardly spoke. Just insisted we did not drive that day.

Thank you for sharing your notes!!! It is amazing the similarities…
I didn’t realize how alone I felt.
I’m not, none of us are.

[Author_Charity_Marie]

Wow, I thought it was just my daughter. Being around so many “normal” children in the school system doesn’t make it more obvious that there’s something off, it makes it harder to understand. For years it’s just been something she did, she was “quirky”, she’d outgrow it. Nope, not outgrowing it.

[Squid]

No one asked…they just kept piling in. Finally a nurse told them to leave, as it was too much for our son.
I didn’t know I had the right to refuse. Thank you!

Phantom!!
I love to find the humor, wherever it may be!!
I didn’t blow up or anything, as we move so much, I’m used to a bit of confusion. However, I do remember thinking: “For a Dr who doesn’t exist, why am I losing sleep over the ever growing bill I owe his office?”

I kinda smiled.