Family and Caregiver Schizophrenia Discussion Forum

Third Time Inpatient In 6 Months


#1

I feel like I am losing my mind. We are admitting my 10 year old daughter for the third time tonight since July 2017. She just got out of the hospital on 12/23. How could she disintegrate so fast already? Can someone please stop the world? I would like to get off now.

This time she had an emotional breakdown and wanted to kill herself because she can’t stop seeing and hearing things randomly that aren’t there. She wants the meds to work but they aren’t. She has periods of normalcy and then these horrible things assault her senses. And I am helpless. What do you say? It’s going to be okay, when it’s not? It’ll get better, but we don’t know for how long?

I hate this, I HATE THIS! I hate what it’s doing to her, to me, to our family. It’s so unfair and I just want to shake these people who are evaluating her like some monkey in a zoo. Their compassion is zero. They are just checking boxes. She’s not as acute as she was last time, she’s now ‘mid’ so maybe she won’t be there as long.

But she had 5 visual hallucinations and 1 auditory. Six episodes in one day. At bedtime all she could do was cling to me and sob. How do I handle this at home? Or do I run to admissions every time? Why isn’t there a better way?

At least this time, I have no guilt. I did everything I could. And I made sure no matter what that she knew she is loved. And that this isn’t her fault.


#2

I’m so sorry your daughter is going through this again, how awful for her. Hugs to you both.


#3

I’m so sorry. I wish I could help in some way. Big hugs and thinking about you. Really hope your little girl gets the help she so desperately needs soon.


#4

By sharing your story you’ve shared your burden. Take strength from all of us here, and learn from our experiences as you begin on your journey of ups and downs, of tears and laughter, of hope and despair. We’re here for you.

10 years old is so very young to be experiencing these horrible things. Our daughter was 14 when we first noticed symptoms, but she may well have been having hallucinatory experiences well before that as she was always ‘a little bit different’.

Firstly, be thankful for the most precious 10 wonderful years with your daughter, that you’ve given her the very best you could, that she’s had the most wonderful childhood. There is nothing like our childhood memories, and no other period of our lives that is so care free and magical. Your daughter has those memories, they are her miracle cure for all things bad, to relive at any time.

It feels like your whole world has imploded, but it’s actually just taken an unexpected turn. You no doubt had plans for the future, a rough idea of how you expected your daughter’s life to pan out. You have to tear up those plans and start again. Your daughter will still achieve many of the things you had hoped she would, so continue to encourage her, continue to love her, and continue to support her through everything. Some things she won’t achieve, but by changing her goals, the rewards for you and for her will be no less.

In the short term it’s about getting her diagnosed so that she can receive effective treatment. This could take months, many visits to the hospital, and lots of questions. They will ask the questions in such a way that the answers your daughter gives will enable them to ascertain what persistent symptoms she has been experiencing. It is difficult when the person is so young, the diagnosis has to be right, so be patient. Once they have a clear picture then they’ll deliver a diagnosis and be able to start trying different medications until they find one that is more effective. Hope for the best, prepare for the worst. Hope it’s a childhood one off blip, prepare for life long schizophrenia. Either way, she’ll have a place in this complex world we all live in. Group hug.


#5

Thank you for sharing, my heart goes out to you and your family. your daughter is so young. All you can do is be there for your child. she knows you love her and she clings to you for support. I hope it is okay to pray for you. Please find comfort in you are doing the right thing. take care


#6

Thanks everyone for responding. I am doing a little better today. Still, a bit sad but hopefully she can get some help to cope better. I just wish there was an actual plan rather than me flying by the seat of my pants all the time. Having no plan causes enormous stress for me and our family.


#7

Hang in there…things will move forward. You’re doing a great job!!! Consider yourself hugged by yet another “friend from the forum”. You’re not alone, and neither is she.

In our thoughts…


#8

Planning will very much depend on the needs of you, your husband/partner, and your daughter. For us, it took about 2 years after our daughter was diagnosed at the age of 14, before we had all settled down enough and had the knowledge to be able to make plans again.

I’m in the UK, our welfare system is very different to the US so I can’t comment on details. After 2 years of ‘flying by the seat of our pants’, our daughter was able to make better decisions about education, career, relationships etc., and we were better able to understand how we could support her, and make plans accordingly to secure what we all needed for the future, such as applying for social housing, getting her on to the right financial benefits etc.

Our daughter is 30 now, she’s lived in her own apartment since she was 22, she goes to the stores, has a new circle of friends (most have mental health issues), has done a few college courses, has had a few relationships with guys (one lasted 6 years), and she’s had a few part-time jobs. Of course, we’ve had serious ups and downs, including a spell in hospital after she had a relapse, and she does need help from us to keep on top of the chores and put the brakes on when she overspends. But overall, she’s coping, and we’re coping, and I think that’s pretty much what everybody does in life.

For now, it sounds like you’re just about getting through each day. As you lie in bed each night, take stock of the day and pick out 3 positives. It could be you and your daughter had a laugh about something on TV, or you had a loving hug together. In the morning, think about what you can change to make life easier for your child. For example, if you want to go to a restaurant but the hallucinations are really bad there because of the noise, consider a drive thru instead, then stop somewhere quiet, like a park, and have your takeaway in the car.


#9

I am just grateful we are catching it early. I don’t know what the future will look like or what she’s capable of and she’s already cycled through multiple relapses but at least we are doing all we can now. I am hopeful it will keep her off the streets later in life, that we are giving her tools, skills, and resources.

Thanks for the support Annie!


#10

These are all great suggestions. We are still trying to figure out triggers. Right now there doesn’t seem to be any rhyme or reason to it all. We have lowered the stress as much as we can but sometimes it’s just so… Unknown. I do try to reflect on good moments and they are snapshots in my heart - the sweet hugs and smiles, the conversations we have now when she is lucid, the moments when things are quiet and normal-ish.

I miss all of that right now although I am doing a little better now than I have in the past.


#11

Our daughter was diagnosed 16 years ago (2 months hospital, 3 months visits to psychiatrists) and we’re still learning her triggers. Stress for sure, but even sitting facing the wrong way in a restaurant can cause her voices to wake up. Any form of criticism is a no no. Being around her is like treading on eggshells. Humour is a great healer, and talking about her favourite films often helps.

We still miss our little girl and at times the pain is unbearable, just wondering what if. That pain never fully leaves us. We take strength by refocusing on what she has achieved whilst living with this burden, and what she’ll no doubt achieve in the future.

Take care to protect other family relationships, especially with your spouse. For sure there are good things ahead :slight_smile:


#12

I’m sorry I wasn’t able to respond sooner due to cell phone service but so sorry to hear that you’re daughter had to go back in the hospital.
We all remember those early years where there are no answers and it seems like even the professionals don’t give much advice. Or when you are in the PD’s office where you’re paying $180 for help and they tell you that you’re in between a rock and a hard place.

You need to give your credit yourself credit for what you’ve done to help your daughter so far. Information comes in pieces and help will come that way I find. We all know what it’s like to be in limbo, waiting for the other shoe to drop. But this too shall pass. I’m praying for all of us here.

I believe they will eventually find the right meds for her. They will be able to see what you see and first hand. Hang in there and breathe.

I feel like a failure every time my son goes to the hospital and I know this is ridiculous. What other illness would this feeling of guilt/shame pertain too? It’s just hard to shake and even talk about YET I know I’m doing the best I can.

Our children are safe and we helped them get there. We will always be there for them and they know it.


#13

I talked to her new case manager yesterday and feel like some light bulbs might be lighting up for them this time. One of her questions: “Has she always had trouble understanding the difference between reality and non reality?” Yes, her entire life, delusions go all the way back to age 2.
“Has she always had a problem with obsessional thinking?” I had to laugh at that one. Absolutely. And one of the nurses was on the phone with me discussing admitting her when it happened. She couldn’t make the voices stop screaming at her.

I am hoping we get some kind of answers this time and not more of the same. This hospital seems to be a good one but our area is very conservative and unwilling to diagnose with pscz for ethical reasons because her brain is still developing. My response is, I am sorry, what do ethics have to do with this other than properly diagnosing and treating your patient? If you do that, there is no ethical concern! They are just so worried about being wrong but to me it’s so obvious. I keep telling them she meets 100% of the criteria in the DSM. This isn’t a questionable or borderline case. But because they haven’t been her mother for 10 years, they can’t see it. They just get snippets. I am up to over 20 pages of details about her now and someone finally read it. So maybe we will get somewhere. Maybe not. Who knows? I just keep waiting.

I talked to her yesterday and she is just off now. She is convinced someone changed her meds (confirmed they didn’t) and that she doesn’t want to be a girl anymore because boys have it easier and Girls have pain. This is because she is starting to develop now and puberty is a concern. So I explained to her about her period and what to expect and now she’s scared. *sigh Some days I can’t win and it’s so hard to know what to say, what to tell her, HOW to tell her. I try not to scare her but no matter how careful I am, her brains warps it, and then uses it to terrify and torment her.

I keep asking myself if I triggered this. Did I destabilize my own child? I keep telling myself I have no control over her thoughts or how she will interpret things in her own way. It’s so unpredictable. I am going to try and insist on a residential program but I am not sure how far I will get. It’s not fair to keep bouncing her in and out and letting her destabilize repeatedly.


#14

Charity, big hug. Remember, you present the evidence and let them make the diagnosis. The plus side is you won’t have to swallow the guilt if they are wrong. You love your child and you need to be patient. There is no quick solution and the medicines take time to work. It is a sucky situation all the way around but it is how it works. Try to take it a day at a time and Look at the frequent hospitalizations as they haven’t found the right meds yet and yes I believe puberty has got to be a big play in this. In my opinion. Try not to get ahead of yourself like I am so guilty of doing. I am used to working under deadlines and managing a lot of details. If there is anything this illness has taught me, it is to slow down and this illness has no deadline. I’m sure you’ve heard this before, this is a marathon not a sprint.


#15

I appreciate what you’re saying. And I appreciate the place you’re coming from. But I don’t have much patience for the suffering she’s enduring. She’s battling as hard as she can, as hard as she knows how, and so am I. The least these people can do is meet her and us halfway. She keeps coming to them for help and not actually getting it. No one is taking this as seriously as they should. I get that they see mental illness every day but that’s no excuse for not having compassion, and for not LISTENING - to her or me. I feel like no one is hearing either of us. I’m doing everything I can think of short of stomping my feet and cursing at them saying “Dammit, why aren’t you listening?!” It’s infuriating and while I would LIKE to believe they’re doing their best, I know they aren’t. Because if they were I’d be part of the solution and I’m still not a part of her treatment team. Not actually. I have been able to meet with a psychiatrist 1 time in the last seven months. I talked to another one via phone. That’s it.

So I gain an inch, lose five. Someone needs to stop and really look at this situation and study it to find out what’s going on. I need someone, anyone, to actually pay attention and say, “Okay, we’re going to work with you to figure out what’s really going on here.” To stop dismissing this as being all in my head, or that she’s making it up, because I know she’s not. This isn’t acting out or a behavioral issue. I don’t care if I’m wrong, just stop shipping her off to the world and expecting her to be fine because you throw some medication at it. Because at the end of the day, the person being hurt is HER. Hurt me all you want. I can take it. But not her. NOT her. She’s too little, and not strong like I am.

And I feel like every day I’m running out of time. I see her falling further and further into this. It’s like watching her be sucked into a black hole, bit by bit. It’s an invisible quicksand. In there is a little girl who is slowly drowning and I can’t stop it. But there are people out there who can, or at least slow it. And if they don’t help her now, while we can still reach her, while she still loves and trusts me and knows who she is, I may lose her entirely. And I’m not willing to be patient with that prospect. By the time she’s an adult, what will be left? We already have days where she loses herself completely, and she’s lost in the delusions and hallucinations and paranoia. It may be a marathon but I feel like I’m going backward right now, not toward the finish line. And there’s no track or course to follow. It’s just all wilderness and I feel like I’m lost in it.

I talk to the staff at the hospital and every day I’m told she’s doing fine, not having any issues, and I find it hard to believe that she went from five to six hallucinations a day to NONE at admission. They are MISSING it completely. They’ve increased her meds last night - her risperidone is now 1mg a day and her Lexapro is 10mg. That’s something at least but no one communicated that with me until I called and asked about it. They’re supposed to call me about med changes. And yet I find out after the fact?

I guess I’m just frustrated in general at it all. I’m trying to take a deep breath, and I would if I had any clue what’s going on.


#16

What about taking her to another hospital?


#17

Charity, I have so been there and know how you feel. I remember being upset that they wouldn’t allow a guardian the right to know what medication my son was taking. I. An only talk with the social worker not the doctor. Upon dismissal everyone should be able to have a family meeting. I got that one time. I hear your frustration and your fear. I’m sorry If I came off as a know it all. I don’t know what you are going through but I can still listen.


#18

I am working on that. Closest one is about 45 miles away.


#19

Author, you are battling a strong current here, I think the AMA supports the non-diagnosing of children with scz. Early onset is considered rare by many brain disease authorities. They teach doctors if you hear the sounds of hooves, don’t think zebras. I speak as a mom whose only children suffer from an unknown genetic kidney disease that is now named after them, while unknown kidney disease aren’t that rare as 20% of people in kidney failure are there with unknown diseases -just most of them didn’t slowly lose the function of their kidney over the first 20 years of their life without any other problems . Add in one of those precious sons having autism and the other insidious schizophrenia, well, I have heard my share of zebra hooves. In other words, I am on your side, everyone here is on your side.

If I was you, I would focus on contacting nimh.nih.gov While they do a lot of studying of brain diseases in adults, maybe you can convince them to bring your daughter to their facility for an evaluation. They bring a lot of adults there, maybe they do kids, if they don’t, maybe you can interest them in making an exception with yours.


#20

I wonder if the non diagnosis of it is what keeps it so ‘rare’. I have heard from many people who are diagnosed as adults who showed symptoms as children. A lot of the research I am reading says catch it early and you can slow the damage. They are treating her at least but the difficulty is in the bigger picture. Without an actual PSCZ diagnosis I can’t get her SSDI or more importantly Medicaid as a secondary insurance. I am fine with paying my share. I also need to protect her in the school system and legally. I don’t know the steps to do that without the right diagnosis. Even the school has said the accommodations are limited by her diagnosis. She is about to enter 6th grade in August and a whole new school. I have 7 months to figure it out.