Family and Caregiver Schizophrenia Discussion Forum

My heart breaks


#1

Hello all ive not been here for a while since July 2017 my son has been on an acute ward being assessed with his illness in this time hes been moved to an intensive care ward 4 times as i write he is currently in one 10 weeks a go things took a turn to a new level hes become treatment resistant and at last we have a proper diagnosis of heprofenic schizophrenia ( any one else experience this type?) Is very different from paranoia skitz . They have now decided to put him on colazipne hes been on it 10 days now hes presenting calmer which is good because hes been very violent this time hes assaulted a large amount of staff and patients so hes been nursed in either seclusion or an extra care suite with 2 staff at all times . Other than calmer his mental state is the same im just hoping that hes not treatment resistant to this too. Hes 19 his first admission was at 9 each time a tiny bit worse till we have got to this hes now been in this full blown level for 10 weeks. This feels like a bereavement my inner soul is shattered.


#2

I am so sorry that you are going through this. I am hoping for you too that the Clozapine helps your son, and that his body accepts the med ok. I have not heard of heprofenic sz, but am going to look it up. While he is in hospital is the best time for you to take care of yourself. You need it! My son is on the same med for two years now, and though he is no where near his formal self, he is much calmer. more in tune with emotions, and is taking better care of himself, but it is a long process, as all of it is. The grief is inevitable. We have lost so much. Just let yourself feel it, while taking care of yourself. Big hugs sent your way.


#3

Hi Sandy. I’m so sorry for your sadness and pain. It does often feel like a bereavement. You’re not alone.

I hope the Clozapine can make a difference for your son, so he can live a better life. Hugs to you.


#4

Sandy, I am so sorry. In reading I saw it’s also caused disorganized scz. That he is already calming down on Clozapine is good news. They are probably telling you that Clozapine can continue to improve symptoms for years. My friend who’s son didn’t respond to anything else, did respond to Clozapine- she thinks it’s a miracle drug. She says people have to be patient.

Our grief cycles with their illneSS, thanks for letting us know, Hope


#5

Sandy. I feel like this sometimes that my heart is broken whenever I talk to my Son. My sons pauses through the conversation when I speak to him and he is not as aggressive as he is used to be. he is now on Invega-sustena shots and not improving a lot. I spoke to to Social worker and his Public Guardian and they both think that Clozapine will help my son better.

his public Guardian said "Clozapine is best med for IS/voices"
your son is on the right medicine. he just needs to keep taking it and not skip…
he will get better with time.
in the meantime, take care of yourself…


#6

Sandy, are you talking about Hebephrenic Schizophrenia, which is disorganized schizophrenia? My daughter also has this type. She is doing a lot better since the diagnosis and being treated starting around two years ago. It has taken several medication changes and adjustments and a lot of therapy, but finally there is a light at the end of our tunnel. She has had problems since early childhood and was only diagnosed at the age of 31. How I wish they would have caught this much sooner. She has never been on clozapine. After your son is stabilized, hopefully a good therapist can work with him. My daughter has cognitive therapy and it has helped so much. Hugs and prayers for you and you son. I hope you see a big improvement soon. :heart:


#7

It is so heartbreaking and you only understand it if you have been there. I am still so heartbroken after 3 years since my son’s diagnoses and am barely learning to live with it, but I have learned not to talk about it much because most people who haven’t been will not realize it is a death of the child you had all those high hopes for and you and your child and family have to learn a whole new way of life. Many hugs to you and stay strong for him.


#8

@Sandy So sorry for your grief, I understand all too well…my son also was diagnosed with disorganized schizophrenia which is the same thing. I think clozapine is good news too --but it does take many months to years to see the full extent of results so long as the blood tests keep coming back good. My son has been on it for about 8 years with good blood tests all along and he still shows small improvements even today but the bulk of his best improvements (ie: stopping the major delusions, stopping the voices, and making organized speech possible) happened within the first 12-18 months. I view this drug as a miracle because prior to clozapine my son had tried many other medicines and was considered resistant to treatment. I wish your son the best on the clozapine and my best to you with coping --please take care of yourself.


#9

My son has been on clozpine,450mg daily for four years. It has been a huge help. He had tried 7 other meds. The blood testing is a hard but gets easier. I wish you all the best.


#10

I’m so sorry for what you have been going through. My daughter was diagnosed with schizoaffective disorder at 15. After multiple med trials and hospitalizations, we decided to try clozapine. She has steady improved ever since. If he can tolerate the drug, it can work wonders - not a cure - but a huge help. Combined with good therapy and out patient psychiatry, she is stable and setting small achievable goals for herself.


#11

hope never fails. yes it feels like u lost a child when this illness hits


#12

Sandy that’s good news he is getting calmer. My grandson says he is 90 percent better now and he can stand the 10 percent and sometimes he even feels he is cured. He has been on it for 3 years now and is now working two jobs and making friends it has been a miracle for him best of luck to you tough disease. He seems to get better all the time. So 10 days is early


#13

Sandy,

My son has also been diagnosed with the same kind of schizophrenia, and I too have been in the mourning over the loss of the child I once knew.

He had just turned 23 in May 2017 before his psychotic break on July 9th, and was hospitalized for two and a half weeks. The psychiatrists of the psych ward refused to give my son a diagnosis of schizophrenia, even though our family voiced our concerns through letters, phone calls and personal visits to the hospital that my son had been displaying behaviors consistent with schizophrenia. Prior to his hospitalization, our family tried to get him taken for evaluation by calling mobile crisis, and they did not take him, because he was very calm, told them he was willing to get evaluated on an outpatient basis. The soonest appointment I could get for his outpatient evaluation was August 2nd - at least 6 weeks away!

My son would not allow us to see him or talk to him while he was in the hospital, and we begged the hospital not to let him out, since we know he wasn’t talking to us (except for 2 short visits with his brother, my youngest son), we knew something was terribly wrong (he later admitted to being extremely paranoid of us, his family), because this is not the kid we knew.

Despite pleas from family that he was not safe for discharge, our requests for a meeting with head of Psychiatry and or head of the facility were denied. Psychiatrists said he had a “thought disorder”, and “thought blocking”, but wouldn’t diagnose him with sz. That must have been their way of feeling like it’s okay to discharge my son in such a state. As he was manic upon discharge. My son was discharged to a homeless shelter with no medication management. He never took his medications, he never spent the night at a homeless shelter, he was on the street like an animal for 2 days and two nights. Exactly 47 hours after his discharge he was involved in taking a vehicle that was not his, driving it through two red lights at over a hundred miles per hour, and crashing into another person, who thankfully was able to literally walk away from the accident. Which is a miracle. My son however had to be hospitalized again for 5 days, and then he was placed in county jail for 75 days.

During the time he was jailed our family did not post bail, explaining to the judge during each court appearance that my son needed a secure therapeutic environment to address his mental health issues. For whatever reason, our concerns were not taken seriously. The judge was about to waive his bail and have him released to a homeless shelter once again! A good friend of mine who is a social worker who has personally witnessed some of the the countless tears I have cried, made phone calls to various facilities, and was able to get my son accepted into a rehab that deals with dual diagnosis of mental illness and addiction. They kept him for two and a half months and that is where a state doctor officially diagnosed my son with schizophrenia.

After 2.5 months in that rehab, he was placed in a group home for the mentally ill. And yes, I am still in mourning, but I don’t really cry every single day anymore - it’s more like every other day, or sometimes I can skip two days. I am trying to get used to this life, and it’s still unbelievable to me sometimes that this has happened, that this is happening, and is going to keep being our reality.

My son still hears voices from the moment he wakes up until he goes to sleep, they are threatening. The only thing that has really worked is Klonopin, but the Klonopin does not take the voices away, it merely helps him feel less fear than he would ordinarily feel from hearing the voices.

But these posts with the meds and the positive reaction other people have experienced w/the medication your son is on - I’m going to let his psychiatrist know about it.

One thing of note, my son’s psychiatrist insisted that my son get tested for Bartonella infection, and my son did test positive for that. Presently he is on oral antibiotics for the Bartonella infection. She said at least 10% of her patients are experiencing their schizophrenia-like symptoms from untreated Bartonella infection. She said with successful treatment her patients have had their voices go away and return to normal life. My son has been on antibiotics for 6 weeks now and still has not experienced any significant relief. In a couple more weeks if he still is hearing voices to the same extent he will be going on IV antibiotics. And if that doesn’t work then I definitely want my son to try the medication that your son has been on.

My heart breaks for my son, because prior to all of this he had been very ill with chronic lyme disease. He had to drop out of college in fall of 2013, had been basically couch ridden and bedridden for much of that time, in between then and last summer, when his mental health took a nosedive. He hasn’t had a chance to even live life the way most teenagers and kids in their early twenties get to live. He has another court date soon and it looks like he will be having to go back to jail. The public defender told me it’s an election year and they wanted prison time for this son of mine who has never had a criminal history, and was a person who should have simply remained a patient in a hospital, but the public defender worked out a deal where he will get credit for time already served in jail for the 75 days that he already did, so he will have to do 45 more days in jail, and then have 5 years probation…the DA wanted to put him in prison.

Now our family will have to hope that for the next five years that my schizophrenic son will never get arrested for anything…If it wasn’t for my faith I know my own mental health would be in jeopardy. My heart and prayers go out to all the families on this forum.


#14

Hello zachsmom,
just reading your post in the wee hours of the morn.
I just found out that my son Lou, was transferred back to jail for a competency hearing. Lou was commited into a state hospital. Us poor parents! we hope, we pray and we wait.


#15

I am so sorry to hear of this Annie…My heart goes out to you and all the parents dealing with this. If we had opted for him to go to trial, instead of taking the plea, it meant rolling the dice using the diminished mental capacity defense, and him ending up committed to a state mental health facility for an indeterminate amount of time…we figured 45 days at least has an end date, so to speak, although still not ideal. We are of course terrified that he will inadvertently commit a crime during his 5 yrs probation, (whether due to med changes, or another psychotic break, etc and not being in reality) and wind up in prison anyway. Will you get to visit your son while he is incarcerated?? I am so so sorry! I know none of us parents plans on THIS being the reality of our children’s lives, or our lives.


#16

Very similar situation here. Our son is 34. All I can add is to remember this is not your fault. Stay true to your son. Look after yourself mentally, physically, spiritually.


#17

Hey Zacksmom and all of you, we are waiting to find out what happens with the court ordered competency today. I do have to mention that the senior court appointed attorney has been very compassionate and fair with our sons situation. As some of you know Lou suffered a horrible accident and almost died. after months of recovery things were looking really good and he was doing very well. Then the assault happened.
Lou was taken from us and we have not seen him for one and half years. All said and done, Lou was commited to a state hospital in california. after many months of no communication with him, he finally accepted a phone call from us and his sisters. We have had regular talks with him and it has been very encouraging. He finally wants us to visit. I have the paperwork ready, we live 15 hours north of where our son is. We just found out he was transferred back to the sheriff’s department, where he is awaiting a hearing, (we feel but do not know for sure), that he is not aware of what has happened and does not really understand what is going on.
It’s very complicated, because Lou is incompetent he cannot sign any release forms. He is a ward of the state. The HIPPA Act does not allow us to have any info about our son.
I took some time this morning to sit and pray, I am very fortunate to have a loving husband, and 2 wonderful daughters. we all Love Lou very much, he is a very kind and caring young man. I appreciate all of your thoughts and pray for all of us here who are dealing with the ambiguous loss of our family members.
Shalom-
Edit: I know this topic is about coping with the guilt, the shoulda, woulda, coulda syndrome is what I call it. I just wanted to added that I was with Lou when he assaulted the victim, I was not able to stop what happened, and feel just terrible, and would do anything to change it, but it still happened. Coping with the guilt everday.
edit: yes we want Lou to have a plea of incompetent


#18

This must have come as such a great gift! I hope the competency goes the way you want it. You want incompetent I believe? Thinking of you and praying for you and your family Annie! So glad your son wants to see you!

Diane


#19

@AnnieNorCal

They do a competency hearing on the young man, Ross, that killed his parents (his mom was in our FtF class) every now and then. I keep an eye on his court logs. So far he has not been deemed competent to stand trial and they return him to the forensic facility.

I have wondered if the meds they are giving Ross aren’t working or if they aren’t able to medicate him at all.

Glad to hear your son wants to see, hope you get the right results.


#20

Thank you all for your support. No news about Lou. As I mentioned before, there are a lot of good people who have been working with our son.
Hope you all have a good weekend