Family and Caregiver Schizophrenia Discussion Forum

To young to have to deal with any of this


#1

I understand if the info is not allowed.

How young has everyones loved ones been when they started to have mental illness? I never imagined I would have a child at the age of 10 dealing with the illness he is and finding out it has been going on for a couple of years. I know I saw a change in him nothing major but knew something was up and would ask what was wrong and tell him he could talk to us and him telling us it was nothing. Then one day he tells us. He was diagnosed with major depressive disorder with phycotic symptoms and generalized anxiety disorder. My thoughts are will he have to deal with this the rest of his life, could it get worse, will he always have to take meds? He seems to be better as of right with it all. It is still a very new thing (couple months) for all of us and trying to find the right meds and dosage.


#2

You can say anything here…

Not good, but catching it early, many iterations of meds and docs, My best advise is to read from this site and start long term planning…

Daughter at about 17, wife at about 30

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

The Course of Schizophrenia
◦Early intervention and early use of new medications lead to better medical outcomes for the individual
◦The earlier someone with schizophrenia is diagnosed and stabilized on treatment, the better the long-term prognosis for their illness
◦Teen suicide is a growing problem – and teens with schizophrenia have approximately a 50% risk of attempted suicide
◦In rare instances, children as young as five can develop schizophrenia.

After 10 years, of the people diagnosed with schizophrenia:
◦25% Completely Recover
◦25% Much Improved, relatively independent
◦25% Improved, but require extensive support network
◦15% Hospitalized, unimproved
◦10% Dead (Mostly Suicide)

After 30 years, of the people diagnosed with schizophrenia:
◦25% Completely Recover
◦35% Much Improved, relatively independent
◦15% Improved, but require extensive support network
◦10% Hospitalized, unimproved
◦15% Dead (Mostly Suicide)

(Source: Surviving Schizophrenia)

Where are the People with Schizophrenia?

Approximately:
◦ 6% are homeless or live in shelters
◦ 6% live in jails or prisons
◦5% to 6% live in Hospitals
◦10% live in Nursing homes
◦25% live with a family member
◦28% are living independently
◦20% live in Supervised Housing (group homes, etc.)


#3

Saw signs for my son at 20 ish. full blown episode 27. Cousins son was like 8 - bipolar. The good thing is that you can control meds for your son. Mine is not quite sure what is going on at this point. He does not think anything is wrong with him, it is the outside world that is messed up. So no meds for him yet.


#4

Check out the “Born Schizophrenic” series. You can google it. It’s about a family that has 2 schizophrenic children. They have set up a foundation for parents of children w schizophrenia.it would be a good resource for you.

After much struggle, this family was able to get the oldest girl, Jani, stabalized. The younger brother, who I think is 6, was a much harder case. He was very violent toward himself, biting himself. The whole series takes an unflinching look at their lives.

It’s also hopeful! The mom has successfully brought parents and children together for events, support and advocacy.


#5

Thank you for the info.


#6

I fell like any age is too young. I am thankful that we can agree on taking meds. Wish you the best with yours.


#7

My son was a young adult when he got sick, however; I work as a school counselor in a school for kids with emotional disabilities and we have several children as young as 8 with schizophrenia or schizoaffective disorders and several teens with major depressive disorder with psychosis. I know this must be so devastating for your family and the diagnosis is a tough pill to swallow. I hope that you’ll find some comfort in knowing you aren’t alone and that this condition is not always disabling. There are individuals living with schizophrenia who are functional adults with careers, families, and a fulfilling life.


#8

My son was early teens I believe, 13-15 not sure exactly due to substance abuse and misdiagnosis, but officially diagnosed at age 20. He’s 33 today and stable after a long and rocky road. So sorry you and your son have to deal with this. I wish you success in finding the right treatment.


#9

I read your post and my instant thought was, “This is us.” Although my daughter may be a bit worse with her symptoms (doctors currently are baffled as her symptoms are very advanced and complex for her age). My daughter is in the hospital right now, inpatient, due to a recent crisis. It’s her third emergency admission in two years. She’s had one inpatient admission for 30 days into a residential program. We’ve known for years she was “different” but were blind to the signs. In 2015 she was diagnosed with Severe Depression and admitted for suicidal ideation. In July 2017 she was diagnosed with major depressive disorder with psychosis, oppositional defiant disorder (misdiagnosis), and generalized anxiety disorder (That one is 100% correct). MDD w/psychosis is by my interpretation, a childhood version of schizophrenia, although others may want to lynch me for jumping to that conclusion.

We didn’t know it until a few days ago that she relapsed two weeks after being released. We continued to struggle along and cope with behavior we didn’t realize were symptoms of her illness for five months. In October, the psychiatrist added paranoia as a diagnosis and bells went off in my head. Paranoia + psychosis = paranoid schizophrenia. Stil, I didn’t understand. Last Thursday she suffered a complete psychotic break for the third time while I was at work 30 miles away. Thankfully my son and a neighbor child were with her and able to keep her safe until I could get home. The psychiatrist is trying to diagnose her with Bipolar Type 1 w/psychosis but I know that’s a misdiagnosis.

I have a blog I’m keeping and one of my posts goes over all of my daughter’s symptoms. That may or may not help you with recognizing or recalling some behaviors in your son as I’ve described matching incidents and symptoms in detail. (Caveat: Statistically speaking, a Paranoid Schizophrenia diagnosis at age 10 is a 1 in 40,000 chance. I’m finding it to be a very small world currently.)

Some of the symptoms were much milder in the beginning but she showed an initial clue at age 2 when she believed that Dora the Explorer was her best friend but lived in the TV so she couldn’t come play with her. At age 5 she had a complete panic attack (and her first psychotic break which played out over subsequent months) seeing a skeletal figure in the closet while screaming “It’s right there, don’t you see it? Why can’t you see it?”

As of today, she’s best friends with a spirit named Lulu, who has no eyes and is searching for her eyes, one eye is brown, one eye is green. Libby says Lulu won’t hurt her because Libby understands Lulu’s purpose. Lulu’s friend named Surrender, however, isn’t quite so nice. Right now while Libby’s in the hospital, Lulu can’t get in, but she says she’ll be back, and she visits Libby in her dreams every night to remind her of that.

The bad news is there’s no cure. Yes, it can get worse, but a large percentage of schizophrenics get worse very gradually if at all (the top 50%). Many are able to manage life well with medication and treatment (again, top 50%). I even read one story recently about a schizophrenic who gave an interview and who teaches law at Yale. Obviously, her illness is well managed and she’s developed some very good coping skills to function at such a high level. There’s hope for many who have it with current medications.

In our case, we’re already in the bottom 25% and may one be in the 10% who commit suicide. My daughter has deteriorated very rapidly, despite medications. She’s in the hospital right now, on the maximum allowable dosage for her age and weight, and still having hallucinations. The problem is, the hospital didn’t recognize her hallucinations until I got involved.

What I’ve done is to get educated as to what her symptoms are, what the medications are, open a line of communication with treating doctors and support staff, and advocate for her best interest in all areas of her life (School, home, other family members, medical community etc). I, as her mother, am the only person who understands how she thinks and intuitively understands her. After all, I’ve known her since conception.

Most importantly, I’m so sorry for what you, your son, and your entire family are struggling with. I hope that he continues to remain stable.


#10

I am so sorry to hear what you have been going through with your daughter, I know it’s not easy. Things for us are not as bad but anyone having to deal with a loved one and mental illness is not easy. Most days you would never know anything is wrong to the degree it is. I feel too that schizophrenia is what as an adult they would label it but as a child for some reason they don’t. I am doing as much research as I can and that is how I came across this page. Being able to talk to other people and know that we are not alone makes it a little easier, even though as I’m typing this my emotions are getting the better of me. I also look back and see the little things that probably added up to where we are now and think how did I not know it was this. I am trying to keep track of everything now in a journal that way I have it to look back in case things change and may be able to pin point better what symptoms and all are. I feel too it is a very small world that we are in with are children and what they are dealing with. Seems to make it harder to know answers and get the right help needed. I am sure I will be keeping up with you on here as I feel like you said “This is us” is the closest I have come across to our situation. I hope the best for y’all and that you will find the answers and help needed.


#11

@Author_Charity_Marie. I’m sorry to hear about your daughter. I’m curious how old she is now since she started this so young. My son is 27. Looking back, of course, I see many signs pointing to his MI starting about 7 years ago.


#12

@DianeR She’s ten currently, she’ll be 11 in February.


#13

There definitely are psychiatrist who specialize in childhood schizophrenia. Check Calif., UCLA, I think. Probably some good ones in NY, too.

I don’t know how much travel that represents for you. But it would be worth a visit with one of these specialists, to at least get a diagnosis and treatment plan. Then the specialist can consult with your local psych for continuing care.

Let me know if you want help researching this option.

Take care!


#14

@Author_Charity_Marie Oh man, that’s rough. I’m glad you figured it out early and are able to be her advocate.


#15

My brother was 18. I’ll spare you the details. I was 8 when it happened. It’s good you caught it early. My brother was not so lucky. There were signs that something was wrong, but it was ignored for years. Then, one day, he just snapped. The only hope I can give is that it can get better. Especially if it’s caught early. Since you caught it early, you have time on your side. Most likely, yes, he will struggle with it the rest of his life. But the mind has an incredible ability to heal. I’ve seen that in my brother. Could it get worse? Certainly. Could it get better? Certainly. My guess is, he’s probably already gone through the worst of it. Now it’s time to recover. Since he’s so young, he might really struggle with this through his teen years. Puberty plus mental illness? Not a good combo. But with the support of his family, friends, and health professionals, there’s a good chance he can live a mostly normal, healthy life.


#16

@Alycat. Some studies have also shown a gluten-free diet can help. I’m new to this too. It’s been about 6 months since my son was diagnosed so I’m trying other options besides meds as my son won’t take any medication. Or supplements for that matter.


#17

I’m so sorry you’re all going through this. My youngest girl is 9 yrs old, and her symptoms started at 7. She has been hospitalized inpatient 4 times, yet eligible for far more, and has been in partial hospitalization many more times than that. She is currently getting specialized treatment for severely MI children. Her diagnosis at this time is Major Depression with Psychosis, Gen. Anx. Disorder and Dis-regulated Mood Disorder. It’s heartbreaking. Way harder than my 19yr old son’s autism, for me. There are so many books on how to care for an autistic child, now. So much material to learn from. To care for a child who gets violent and hallucinates, there’s nothing. First thing I looked for was the family with the two schizophrenic children, one named January and the younger Bhodi. Other than older documentaries on You Tube and a few old blogs, there hasn’t been any new material that I’ve been able to find in years. So far, as a single parent, I am utterly alone in this. It is just myself, her 19 yr old brother , 13 year old sister who is also on the autism spectrum and has adhd and severe fibromyalgia. I am also chronically ill and disabled. I am scared to death about their future. Thank you for posting; I hadn’t found anyone else online with a young child with these issues, and now because of this thread, there’s 3 of us.


#18

I watched that video as well and my heart broke. I agree there is so little in terms of resources. This forum has been the closest and best resource I have found. I did a calculation. If the US population is 323 million and early onset SCZ is 1 in 40,000, then there is around 8,000 children with early SCZ in the entire country. That’s a little less than 2% of the country. Same formula, there are 190,000 cases in the entire world population of 7.6 billion right now or .000025% of the world. Of course these children eventually grow up to become adults and become part of that population.

I cannot imagine what you must be struggling with. I am, for all intents and purposes a single parent as well because my husband is a truck driver and gone 5-6 days a week. I work full time as a personal injury paralegal. So because I manage cases and medical care I have more knowledge than the average. I am also very versed in building evidence and telling a story around symptoms.

My stepson has autism, ADHD, and sensory processing disorder. I feel your pain there as well. The saddest truth is none of us are alone and yet we are alone. We aren’t alone in the struggle but we are alone in living in it day after day. The forum has really helped and blogging has really helped me to vent. My husband and I have found thinking about and planning for the future is impossible right now so we are just taking it one day at a time.


#19

I knew my son was not right when he went to preschool aged 4. He will be 22 in March. He has been psychotic/schizophenia since he was 15/16. He went through all that, mdd, odd, adhd, lots of other stuff, hospitizations, long term adolescent treatment. Bottom line, he is now classic paranoid schizophrenia. I go to NAMI. This is new normal.My son is violent toward me. Hope you don’t get that. It is hard darling, really hard. We get comfort here and in prayer. xoxox


#20

I am hearing more and more stories from people with adult children now diagnosed schizophrenic who weren’t diagnosed as young children. I have heard a rumor from a current graduate student of a psychology program that the reason they won’t diagnose it earlier is because of potential malpractice lawsuits, children are still developing and doctors often can’t tell the difference between other behavioral and mood disorders. Has anyone else experienced this? Or has it been more of an inability to recognize the symptoms clearly until adulthood?

For my daughter who is 10, she doesn’t manifest symptoms all the time and while she has above average verbal skills, communication skills, and vocabulary, I frequently feel people don’t BELIEVE her or me. No one has said they think she is making it up for attention but that’s what it feels like they are saying? Is it just me or do you experience this too @Alycat? Half the time right now I am wondering if I am the crazy one or seeing symptoms that aren’t there.