Early Onset Childhood Schizophrenia


#1

New to site, and was horribly surprised at how difficult it has been to find an online support forum.
Son was unofficially dx at 3yo, formally at 8yo, and is now almost 14yo.
Years of meds, different ones, and twice reduced meds only to discover how much he needs them. The “psych breaks” were frightening…worse than…there just isn’t a word for how it feels to watch your child in the midst of such…?..terror
Husband at first expressed concern that we were (his words) “lobotomizing with medication”…he had a point, as son is so heavily sedated. Then, after reducing the amount of Seroquel and watching the ever increasing episodes of obvious psychosis, shut down. Literally, shut down. It’s too much for him to watch and deal with.
So, I’m the one who handles the multitude of associated realities, and I keep him (husband) in the loop as far as important things are concerned.
Whew…son is home schooled now, as he could not function in the public school environment.
And heavily medicated, which means: little or no school.
The doctors want to put him through “testing” to determine if he has developmental delays or other issues.
Has anyone done this? What is involved? What are the risk?
In our sons words, he is completely fine if I would just bring him food several times a day, and leave him alone. Check in, talk if he is receptive, but basically take care of him and leave him in peace.
My grief is NOT his problem to deal with. It’s too much for husband. And it’s most certainly not the responsibility of our second son who is a year older. It’s MY grief.
And it’s heavy.
Is there anyone who can relate? I can’t believe I am the only mother “out there”.


Prodomal? Just hanging on
#2

Hello, I’m sorry you are going through this. There are people on this forum and in the world who relate directly to what you are going through.

I am just going to give you this information: where we live, if a child has a mental illness diagnosis and no other diagnoses, there are fewer resources available. Testing for other issues might bring to light any other diagnostic condition that could be treated, giving him a better life. Also, certain diagnoses in the developmental delay spectrum open doors for more resources i.e. money for services to help with a child’s care in the state where we live.

Unless this testing were very stressful or distressing for your son, it might have positive effects on his life in a couple ways.

Best to you.


#3

Thank you…

I had one of those moment where you wake out of your deep sleep with the awareness as to what the dr meant. That “ohhhhhh!” moment where things are so cheery, but instead there’s a sick feeling.

The dr has been pressing for him to be further tested, he’s kind and gentle dr who doesn’t want to upset.
I realized that he’s telling us to get our son tested further for disability reasons.

Dang…I was still hoping that he would be able to lead a “normal” life.

What do I tell my son? If anything? He’s almost 14 and sometimes talks about a wife and children. When he talks about getting a job…well that’s quickly becoming a trigger for him.

We are in LA at this time. But have moved 18 times in 10 years, all over the US, so I understand the areas presenting different resources. I’m told that the hospital he goes to locallly has a NAMI support group for care providers. Can’t find the listing though on their site. Will ask at hospital for next visit.


#4

And…it will be stressful for son…and husband.
Who am I kidding?
For me too, as they both rely on me to remain positive.


#5

@Hereandhere is spot on. With another diagnosis you might find many additional resources and services become available to you.


#6

It’s just testing. It doesn’t mean your son will not work someday. In fact, the results might lead to interventions that ensure the possibility of him working is higher.

Just figure out something your son likes a lot and reward him with it when the test is over. That’s what I did. There’s no preparation for the tests, so no need to do anything except schedule and show up after a good meal with lots of protein and bring snacks and drinks your son likes.


#7

So cool…thank you.
He doesn’t talk too much at our appointments, as he becomes emotional and manic when he does. Most of the times he refuses to go, but will because of me. Most of the time he has a flat affect, almost no emotion. Just don’t push him too much, and if you must, then go carefully.
He’s very sensitive.
From your response, can I gather that the dr’s on the testing end are familiar with this/these behaviors? I don’t have to do anything, just get him there and then deal with the fall out on my end?
THAT part I’m used to.
He had talk therapy before, but this hospital doesn’t have any slots open and our insurance raised (doubled) the deductible per session.
Thanks again…I’ll start the calls to the insurance and testing dr this morning.


#8

The testing will consist of cognitive exercises like copying a shape of blocks by building, reading and answering questions, questionnaires for you to complete. Ideally the testing would be completed over several sessions with breaks. I agree with hereandhere that the results could provide you access to services.


#9

THANK YOU! The dr has been so concerned with son that he hasn’t had the time to explain what would happen. Son does not want to go, and I realize that no matter what, there will be fallout from this. However, the access could help. I don’t know what we are going to do as we age. He is completely dependent on us…yes, he’s almost 14, but time is moving faster than I expected.

It seems just yesterday I was telling our pediatrician that something is “off”. (The second dr years later looked slightly ill, and then met with husband and I to deliver the dreaded statement: “this, although too young to ethically dx, this is early onset schizophrenia with strong genetic connections, please monitor your elder boy. He’s at risk when he reaches young adulthood.”)

I have to answer concerns that social services could get involved, they could “take him away”, he could “fail”, or be hospitalized…whatever the current delusion is. I can’t answer effectively if I don’t know what’s really happening.

Thank you so very much…


#10

There should be a NAMI support group for parents and caregivers of young children. They have different needs so usually don’t meet with the family and caregivers of adults.


#11

I’ve had times where we had to stay with our 23 year old son 24 hours a day. My husband and I tag team often.
We’ve had times where we had to help him get dressed, help him eat and I do carry water to him still to make sure he gets enough to drink throughout the day. He always drinks it down like he is thirsty.
We home schooled his senior year because of anxiety around school. He was bullied by several individuals. It was the best decision I made and I wish I had done it earlier.


#12

You will need support in order to get through this. Ideally a therapist for each of you and perhaps a team approach with a doctor and therapist. That is what we are seeking to put together for our son. It isn’t easy but so worth it. Music and art therapy would be wonderful too.


#13

NAMI Basics class is for parents of young children; maybe be able to meet some parents there?


#14

@Squid I can relate to much of what you are talking about. The grief caught me off guard. I kept telling myself she’s still alive and to be grateful. Then it hit me that I was grieving for our lost normal, for the lost hopes and dreams I had for her. I went from hoping she would do something to change the world to hoping she would survive it to hoping I could either help her find or give her some happiness each day. I live for her smiles, hugs, and laughter now because it’s becoming less and less often as she is slowly consumed by mental illness that I am powerless to stop. She is 10 and we are so aware that we are on borrowed time. Her deterioration in the last six months was astonishingly fast. New meds have slowed it again but not stopped it. One day the meds seemed to be working and then it seemed the next she was in crisis. I was shocked to realize it had only been five months since her last admission to acute care.

It can be hard to hide the grief. I tend to cry everyday right now. I am told that this is okay and part of the process. That it comes in waves. There are multiple types of grief - anticipatory, delayed. I will try to post some links, they may help to understand.

Everything seems to trigger the grief right now but seeing little girls her age with a mother figure will almost trigger hysterics. I can’t walk through a toy section without crying. I feel robbed, like she is being stolen from me too soon. I want to beg for more time.

I am sending you big hugs and am here if you want to share. You are not alone in grieving, we all are in one way or another.


#15

Here’s some info about grief. Not all will be 100% related as I couldn’t find one specifically about grief and mental illness but these may help

https://www.caregiver.org/grief-and-loss

http://www.cmhnetwork.org/media-center/morning-zen/we-are-caregivers-A-mothers-story-about-her-young-adult-son-who-lives-with-paranoid-schizophrenia


#16

:disappointed_relieved:Wow…well said and more than I even realized I needed to hear. Thank you, words fail me at the moment.

“part of the process”…
I’m so grateful that you shared.
Thank you again…


#17

Here’s a quote I keep in my notes.


#18

I’m keeping it as well.
Strange, in an effort to “remain positive”, I forgot about what is normal for a mother/woman/daughter/caregiver…well each of the roles I play…what is normal?
Your words about other mothers and daughters…that’s what really struck home.
I’m not an angry person, but waaaaaay deep down, I feel anger about this.

I want to scream…he’s so beautiful, like his father, and should know/experience all the rockin things his dad does. He says he doesn’t want to live if he has to be dependent on us.

I want him to live. :zipper_mouth_face:


#19

Here’s the rest of the quote. It helps me as well.


#20

:joy:
Is this from a book?