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How many of you have an unmedicated family member and what's happening today?


#181

Mom. Why did they switch to Clozapine? Was the injection not working? Was your son having a bad reaction to the med?

Did the hospital overlap the injection with the start of the Clozapine, or did they wait until the injection was out of his system?


#182

Yes the hospital overlapped the injection and the Clozaral. And they did not wait for the injection to be out of the system. In fact he is on 234 Invega.

I am his legal guardian but they did not tell me about him going on this medicine. When I met with his ACT team yesterday they had no knowledge of it either. Thankfully, with what I have learned on this forum I told them that this was a serious medication that needed to be monitored. The supervisor looked it up and agreed.
In the discharge paper there was an appointment set up for blood work on Monday. I then inquired about that.

his discharge papers showed both meds and he said 300 mg clozapine (100 in the morning 200 at night) my sons comment to me was that he did not want to be on the shot so I’m only guessing that they were trying to comply with his request but until I talk with hospital, I’m only guessing.

As with most hospitals and even with guardianship i have to go through medical records to obtain what meds they tried and when they changed. I’m not being overly concerned am I?


#183

I’m all new to this and have no experience with meds, but I think the more knowledge you have the better.


#184

You spoke to the “supervisor” about the seriousness of monitoring Clozapine, but have you spoken directly to the prescribing psychiatrist? I’d want to know exactly why the med was changed and whether they were at all concerned about an interaction. It really bothers me that they didn’t consult with you, his guardian.

Also, I hope your son isn’t planning to stop the daily orals as soon as he gets home. This is another reason you need to know why the injection was stopped.

Has your son been discharged? Does your son have insight? Does he realize he’ll need weekly blood draws? That’s pretty invasive, a whole lot more invasive than a once a month injection. Makes me wonder why he chose this.

The “deal” I made with my son and the hospital was that he’s only coming home to us if he’s on injections. The prescribing psychiatrist wrote a 4 month prescription for outpatient refills.

With all of the noncompliance issues you’ve experienced in the past, I think I’d be concerned. I hope I’m wrong.


#185

I have been thinking about this.
Yes I agree his sz appears to be lightening. He has been ill for roughly half his life but of late he is much more open about his symptoms and less obsessive about what other people are thinking/saying. Some days it is almost like a normal conversation. Then he will say something like “it was given to me…” and I know we are about to embark on a journey of well…craziness.
I know meds are valuable in treatment, but also have debilitating side effects. They appeared to do more harm than good most of the time for him and when they did work, decreased his quality of life. Just before last years blow up the pdoc wanted a CT scan done as he was on a megadose of risperdol. He refused. I wish he would have. More recently he told me a story of being hit in the head with a baseball bat around age 11. I remember some of the details of his story about that day, but was never told about the head injury. Did it happen? I honestly can’t say.
But all in all he is now functioning and smiles more. So we set boundaries with minimal expectations. And hope we have really reached a good point that will continue for years to comee


#186

I’m glad you are seeing signs of your son that you have not seen in a while. Frustrating, but not surprising, that you have to work so hard to get the information when you are his legal guardian.

Do I understand correctly that he will continue to take both meds post discharge?


#187

They told us in NAMI that if there was a lightening of symptoms we wouldn’t really be aware of it until some time had passed - their example was two years later we might look back and say “there, that’s when it got somewhat better”.

When our son began to grow - I think he was around 12 or 13, he became convinced that his dad had broken his nose at some point in his life - an event that never happened. As he grew, his nose did change in shape as his face changed. I finally showed him my sister’s nose which was shaped exactly the same as his - both of their noses have a prominent raised area at the bridge. Its just a family nose that showed up as he grew.

Now I sit and wonder was that the scz at work all those years ago? How far into this years-wise are we?

My son never stayed on any med (3 days the first attempt at meds, and 1 day the second time - the second time he told his psychiatrist the med gave him suicidal thoughts- personally I don’t believe it) I think he was playing that psychiatrist.

The same psychiatrist says she believes his status unmedicated is better than we think.

Since he doesn’t live here anymore, we don’t have a way to monitor him. We just sit and wait and hope that his doctor is right.

Certainly all of the delusions about his dad and I were getting in the way living so close to us. Maybe, if this is successful we will look back in two years and believe the doctor was right.


#188

No you are correct. He took his injection but is due another. He is now refusing his oral medicine. He has another psychiatrist that will take over now. She is part of the ACT team. He told me today he just said he would take the oral in order to get out of the hospital. He wants to self medicate and cannot have any money.


#189

I’m so sorry. Past behavior often predicts future behavior, especially for our children with anosognosia.

Holding all money back works for us. Then, maybe you can pay him to take the next injection?

Maybe continue to remind him that medication will help him avoid another hospitalization?

It’s so awful.


#190

So sorry@Mom2 - they learn to manipulate things so fast - mine hasn’t even been hospitalized, yet he played that last psychiatrist like a pro.


#191

He has stopped the Clozarol just like I thought he would. Injections seen the only way to go for him for now anyway.


#192

Of course he did. Sigh.


#193

I do this too. More than I would like to admit. My son’s extremely picky eating began in first grade. We took him to a dietician, no luck and his primary doctor kept saying “he’ll grow out of it” - well it didn’t and food issues are a huge part of his delusion.

His last hospital visit was two years ago and he seems better, but some of his negative symptoms are getting worse (hygiene) and its about time we think about guardianship. I was so ready to do this two years ago and my momentum has waned and I am scared that the involuntary part is going to make things worse for everybody - but I can’t ignore the advice and knowledge of some folks on here that have wisdom and experience on their side and stuck it out. I see it as cognitive dissonance - I am struggling with what I believe is the right thing to do but my behavior is saying something else.

Its time to make a move and I am terrified.


#194

Very encouraging, thank you.


#195

If my son’s scz continues to worsen gradually, we are going to have to go for guardianship at some point. So far he continues to take the meds that support his transplant. Most likely, when he stops, that will be the point we step in with guardianship. Unfortunately, at that point, it may be too late to save the kidney. His scz would have to be medicated in order to get him to dialysis regularly.


#196

That is a frightening possibility. I think you are right to plan for possible future scenarios. One thing you might want to research is guardianships in your state. Where we live there are few different kinds and one is solely for medical purposes, has nothing to do with the person’s autonomy otherwise. I am mentioning this because if you do have to get a guardianship, you will be able to have all of the information.

Hopefully your son will somehow start to receive treatment for sz and it will work well enough.


#197

We do have some experience with guardianship under different circumstances - husband was legal guardian for both of his parents. His mom who we suspect had scz, had vascular dementia, his dad’s dementia was anesthesia based. HIs dad would began to make some progress back to normal about 6 months post surgery, only to have another surgery and end up back in a demented state.

I will have to look into medical guardianship possibilities. Always good to be prepared - back to eval paperwork. sigh


#198

How are you thinking of getting him to the hospital involuntarily? These people (sz) are so challenging to deal with. I am losing steam myself quite frankly.


#199

Seems like when they get arrested is alway the best chance. Mine was arrested once but I didn’t know…next time I will be ready.


#200

I know every child is different but I worried and antagonized myself so much in this decision. It went fine and there have been very little argument over it. I think my son appreciates having someone watching out for him.

I have no regrets with that decision. I wish tithe best possible outcome with your son.