Home, Diag Forum, About, Contact Us, FAQ

New to this and looking for strength!


#1

Hello
In October my children’s father and boyfriend of 13 years was admitted to the hospital following what I believed to be an attempt to harm himself. He was ready to die. I called the police and he was basically forced to go to the hospital with me where they admitted him. He was there about a week and discharged under what we believed was just being diagnosed with depression and anxiety which he has struggled with for years. When he got to come home I was reading through his paperwork and realized that he had been diagnosed with schizophrenia. He wasn’t even told that. So without any tools or help we tackled the diagnosis alone. Then we started to realize why he had been put on 4 different medications. He was told to find an outpatient program which we did. This program though has only given him access to a psychologist at this point. He doesn’t have an appointment for another month to see a psychiatrist, which puts him 6 months out of the hospital with no medication evaluation or management. Things are not going well and everything I try is met with push back. I feel helpless. I don’t have any tools or knowledge to deal with and help someone with this. And to top it all off my 9 year old son has been displaying very similar symptoms. I’m lost and feel alone.


#2

Very few of us start off with the tools & knowledge needed to help anyone with this - you pick it up quickly though, and this is a great place to start.

Do you have any options other than the outpatient program you’re using now.

In my experience, which is limited to one hospital, part of the discharge plan is to make sure you have an appointment to see someone within days of your release. If he’s not seeing a psychiatrist, what’s he doing for meds now?


#3

Is there a community mental health center in your area? If so, get both your husband and child in to be seen. If there isn’t a center in your area, it may be worth a drive to a larger area to be seen. For your child, most Childrens Hospitals will have outpatient psychiatric care.


#4

Yes he is involved in a behavioral outpatient program but due to it being a county funded program it’s going very slow. He has been able to get the original medication he was put on refilled by his pcp until he is able to get in with the psychiatrist but the pcp will make no changes only refill. I appreciate all the advice I can get because I feel so lost. My son however is just beginning his journey as we have an appointment Monday with his pcp to hopefully get a referral to children’s. I’m a little nervous that they may try to pass it off as ADHD due to his age. From everything I’ve read online it seems as though children don’t usually get a diagnosis of schizophrenia this young… is that not true. Not saying for sure he has it.


#5

My son recently switched over from private treatment to our county mental health center, and it’s been much better than I thought.

However, you will have to push to get him into see the psychiatrist if it works like here.

If it does work like here, they will be able to assign your husband a case manager. Once my son got one of those, she advocated for him to not only see the psychiatrist sooner (put him on the waiting list with instructions that we would take any available appt - they didn’t even have to ask, just tell me when to have him there) but they also pushed for him to get on Medicaid so that they could put him in the intensive community treatment program where he can see the doctor on that team ever two weeks as needed. They can also do med management there to the point they can send the nurse to your home to administer meds.

They do what they can so that, in part, they eliminate some of the pushback that the family gets. This is still all new to us, but so far, I’m liking it.


#6

nami.org has many resources including education and support. If there is a chapter in your area, there will be someone who can talk with you one on one.


#7

Thank you I did see that I tried to find one close but was having trouble with the website I’ll give it another try!


#8

Can I ask how old your son is. And yes I am hoping to get a referral for children’s hospital so that he gets the opportunity to be truly assessed.


#9

My son is 27.
He had his first psychotic break at 15, but if I had known what to be watching for, I would have seen signs much earlier. Now that I know more, I think back, and there were isolated things that would have been obvious to me now.

So, I agree that if you’re concerned about your son, you should have him seen.


#10

Honestly I pray it’s not. Thanks for your insight!


#11

There’s a good chance it’s not.

Some children mirror their parent’s emotions & behavior, and you’re probably extra sensitive to the possibility right now.

Still, better to be safe than sorry without making your child feel like you think something is wrong with them.
From what I read, early intervention can really, really make a difference.


#12

Your so right and I have thought that myself as well, maybe I’m just being over sensitive. Even as a very young child he seemed to be just like his dad in the way he thinks and he has already developed anxiety. That being said though his dad and him are very close and I can see where that may have transferred. But like you said early detection or just maybe even someone for my son to talk to because he has been through alot. My husband had no type of real guidance growing up his mother wasn’t very supportive. Knowing what I already do about the disorder I believe there is a good chance she may be suffering with it as well or something similar. Growing up my husband used other drugs to continue to mask what was going on. Through our 13 years we associated alot of what was going on to his addiction issues. Until we finally got him help and a diagnosis. He is 33 and juse got diagnosed in October. This is where alot of my personal struggle comes in to play. I’ve spent years being the detective and doubting every word that comes out of his mouth and now I’m trying to change the behavior that has been ingrained in me and try to understand the ways I should approach situations and disagreements. I thought for years he was making these horrible decisions based on his inability to stay clean. Now I’m realizing that was all fueled by his disorder and trying to make himself feel normal…


#13

I don’t know what your husband was using to self-medicate with, but if it was opiates (that’s my son’s drug of choice), it can actually reduce symptoms in the short term.

My son picked up that addiction slowly as friends in high school shared their parents pain meds and he helped himself (stole) some from his father’s prescriptions. Then, my husband was in a terrible accident and we had bottles of several different types and dosages in the house. It’s not like we left them out in the open, but we didn’t lock them up at the time.

On opiates, my son seemed symptom free. Then, we found out exactly what was working so well and got him into a suboxone program. He stuck with that for 5/6 years, then this past year, he really went downhill fast. He was also trying to quit the suboxone and finally did - cold turkey. No one can explain how he went from high dosages of that plus Klonopin to absolutely nothing all at once without experiencing any physical withdrawals, but the mental ones were so bad that he ended up in the hospital 3 days later.

If your husband stopped something similar, it can take the brain months to recover just from that.

I truly believe that my son was self-medicating to feel normal more than to get high. I think lots of people with mental illness do.

If you haven’t gotten a copy of I’m not sick, I don’t need help by Dr Xaviar Amador, you might want to get a copy or check out some of his online videos since you were talking about learning a new approach to things. It’s more for people dealing with someone who doesn’t have insight (my son had it, now it’s gone), but I think it is an eye opener for anyone who needs to learn how to effectively communicate with people. I’m naturally blunt and to the point, so it’s a struggle for me to learn what’s in the book, but I’m slowly putting it to use.


#14

It has been many things over the years but ended with opiates. The one thing that I think has kept him the most stable is marijuana though.
No I have never heard of that book but I will pick up a copy asap. I like you am very blunt as well and find it hard to hide my anger. This has been so hard lately because I get so frustrated. The basic things like eating and taking his medicine at the proper times has been the biggest battle. It seems so simple to me but not to him. I’m not sure what medicine your son is on but my husband takes 4 different medications totaling 10 pills a day


#15

After years of insight & being willing to take his meds, my son lost his ability to see most of his symptoms this past year, and because he felt he was not ill stopped taking his meds, and began to refuse to take anything new he was given unless he was in the hospital.

He’s now on a monthly injection, but they’re still tweaking the dosage & timing to get things right.

When it works, it’s pretty good, but they’re struggling to get the right amount in him - enough so that things are under control, but not so much that he has bad side effects and starts to refuse the shot too.


#16

Wow I really hope for your son and your sake they find the exact dose!


#17

I’m sure it will get there.

He’s with a new doctor who specializes in this kind of thing, and I was told she would be aggressive with the treatment.

I’ve seen him tolerate extremely high dosages of drugs, so we’ll see if she’s as willing to be as aggressive as I would like.

At the moment, he has to take the oral version of the injection as a supplement, but she wants to cut it off before he has any side effects - which he isn’t having. I’m finally starting to see some real improvements, so I would prefer to lessen the orals before taking them away completely.

In the past 2 weeks, he’s went from pacing the yard like a madman and having terrible delusions like he was trapped in a nightmare combined with some more pleasant ones, to acting fairly normal other than his social anxiety with just a few milder delusions.

If they stop the pills AND his current shot gives out on him early, he will at some point stop sleeping completely and he can go from being in a good place to hospital ready in about 5 days.

Since it’s a new team, I don’t know what they’re thinking. Maybe they think I’m exagerating? or maybe they think I’m part of the problem? It’s hard to say, and I don’t really care, I’ll just do what I always do and push for the right treatment for him when he’s not able to do that for himself.


#18

Call to make an appointment sooner or go in for a walk-in.


#19

I work in special education and have seen a few kids with schizophrenia or schizoaffective disorder diagnoses. He would need to be having symptoms of hallucinations and delusions for most clinicians to make a diagnosis I would think. I certainly hope you get some answers soon.


#20

I don’t think my son hallucinated that early - I’m still not sure if he ever has on a regular basis.
When he’s really, really, really psychotic, he sees people come up to the front of the TV screen & talk to him.

But, things that we did notice:
– he was very socially anxious
– he didn’t make eye contact very often
– he would very rarely hear people say things they didn’t say, so no internal, ongoing dialog, but they’re still auditory hallucinations
– he often had so little facial expression that I’d have to ask him if he was having fun even when we went to the local amusement park. he still does that in public sometimes, but he has plenty of expression at home or where he’s comfortable, so i don’t know whether or not to count that as a negative symptom.

I can apparently get used to anything if it’s presented to me slowly enough. I got so used to him being like that, and so used to sheltering him from the world to protect him, that I just did more of the same when he finally had his first break.

And, I guess I’m still doing it, although I’m trying to let the treatment team step in a little more. However, if the bottom drops out, you know who’ll be left picking up the pieces …