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Hello,

I guess most of you might remember my previous post (HELP). I'm really scared for my son and me. I found another PDOC last Friday. She is a big UCLA doc (not impressed) but she is supposed to be pretty good. We have had such a hard time trying to figure my son out that she decided to have him drop all meds except for ativan 4 mg a day in separate dosages. He was on only 1mg a day of resperidal, and 600mg's a day of lithium for the last 3 months. What in the hell is going to happen to my kid? After 1 day I can already see a difference. He is angry, agitated, and his eyes look hazy. He is going in on Tuesday so the doctor can better read his symptoms, then new meds. I'm scared because I'm living and caring for my psychotic son. He has a small amount of delusional thinking. He sometimes thinks that people can read his thoughts, or take over his body, but only sometimes. He has other stuff that all of you have heard before. Please let me know what the %$%% my son might go through with a sudden drop in medication. Has a doctor done this to any of you?

Thanks again. ;)

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Truthfully, I'd be calling her service TODAY and asking for some help. That, or put him back on his previous meds and make an appt. with her, or someone else, for a reevaluation. Apparently she does not think your previous doctor had a good diagnosis but if the symptoms are all coming back you need to act now and now wait until full blown psychosis occurs.

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Frankly, it sounds to me like your son is quite severely psychotic and really needs hospitalization where he can be properly diagnosed and stabilized on medications.

Do you have mental health services or mental health deputies in your location that can take him to a hospital (preferrably private if you have insurance)? It does not sound to me that your son is even fit to make mental heath decisions on his own, which makes it much easier to have him hospitalized.

I would not wait at all but instead get immediate in-patient care for him. Just my opinion....

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Hi Erika,

I know you feel like you are going thru the whole wash cycle... I give you a brief outsiders view:

Unless your son is in danger of hurting himself or others, you need to gut it out till Tuesday for the next appointment. I'm sorry, but you need to understand that your son will not always be the bright eyed child that you remember, whether directly from the illness or the drugs he needs. Some times will be better than others. This is hopefully the low point and over the coming months or longer he will get better, but there are no guarantees.

You didn't like the last docs approach and were hesitant to give him the ordered meds. Looking at the dosages for the lithium and risperdal, they are very low, so it's not surprising that he didn't get much relief. You need to go along with the new doc and do what she says. The doctor is giving you the benefit or her best education, training and experience. If you refuse her suggestions out of hand you are denying your son the best care the doctor can give. Be patient, because in psychiatry there are seldom instant fixes.

Sz is a bewildering illness for patients and their families. You might check with NAMI or other organizations and see if they have any support groups you might attend.

Best wishes, a.m.

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Erika,

Please note that your son does not have to be a danger to himself or others in order to voluntarily admit himself to a psychiatric facility. Entrance requirements vary by state. Google your state for information. I have been hospitalized both ways (voluntary and involuntary) several times and it was and still is the quickest way to get immediate treatment.

If you don't wish to wait until Tuesday, that would be an option.

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hi,

i can comment on the lithium. the most ive taken was 900mg and it totally wiped out all my anger & rage issues. then i got preggers and went to 300mg lithium..and i could tell the difference...but i was also pregnant. so who knows? at the end of the pregnancy i totally went off the lithium. and now im having a hard time restarting it.

FOR ME lithium was great for the anger & rage...even at the lower dosage. there was a difference. and now there is still the difference.

IMO, i agree with AM and wait until tuesday. unless your son gets sucidial, homocidal, or does some severe self injury...then go directly to the ER.

much peace,

db

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Hi,

Thanks for the help. I have followed all the advice the doctors have given to me, but this is scary because I can see him getting worse. Today his head is going a million miles an hour, and he is real down and angry. He is suffering, and it's hard to watch. He also has the OCD that makes him crazy all day. Plus panic, and dissociation. I never expected a picnic, but after speaking with all of you I know there is hope. In California the mental health system is as bad as it gets. Emergency pumps full of meds, and wont try to figure out whats wrong. sometimes you don't even see a doctor. They look at the chart and stabilize, thats it. No money no help in wonderful California. I'm going to do what the doctor wants, but of course if he gets real bad I'm going for help.

Thank You.

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here's an option for you: why don't you give the doctor a call first thing Monday and give her an update? i'm surprised no one suggested it.

she may say stick it out till Tuesday, or she may say she wants to see him sooner. you don't know unless you give the doc the info.

and it may help you feel better if you talk with her. did she give you a list of warning signs, things to look for that would constitute an immediate emergency?

we've all said before, but i'm really going to push some kind of support group for you. you have way too many unanswered questions and really don't know what to expect/look for, either good or bad. since you don't have any experience dealing with this, i really think you need more contact with someone who does. we can't be it all. i think you need to talk to other caretakers about what constitutes an emergency, what is important and can wait, and what just needs to be waited out.

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It was a good year at least until I learned to cope with pyschotic symptoms, and I needed several med changes, and saw several doctors. I was in the UK, where the hospital isn't someplace you can book yourself in for a med change. I am not still in bits now. I now live alone, amd looking for work, and have a good life. Psychosis is not a death sentence.

I watched my parents watch me suffer, and it was hard. But they managed to be what I needed them to be, secure in the knowledge it would all work out most of the time. I was terrified enough, seeing them panic the way you are would have been harder for me to keep the faith and weather my delusions and paranoia. Your boy needs you to be his mother, brave and fighting for him. Giving into the terror, refusing medical treatment left right and centre, doubting doctors, this is all going to destabilize him even more.

You may not be able to give him the best treatment there is, or get the help as quickly as you want, that part if out of your control. But your behaviour around him is going to affect how he is. He is living in a place of fear, and he needs his mum to be as steady and calm as she can be. If you want something to control and change, how about yourself? I remember watching my mum weep with desperation, and I have never forgotten it. He needs you to be his anchor.

I recommend some good books, join an advocacy organisation and a self help supporter/carer group.

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It was a good year at least until I learned to cope with pyschotic symptoms, and I needed several med changes, and saw several doctors. I was in the UK, where the hospital isn't someplace you can book yourself in for a med change. I am not still in bits now. I now live alone, amd looking for work, and have a good life. Psychosis is not a death sentence.

I watched my parents watch me suffer, and it was hard. But they managed to be what I needed them to be, secure in the knowledge it would all work out most of the time. I was terrified enough, seeing them panic the way you are would have been harder for me to keep the faith and weather my delusions and paranoia. Your boy needs you to be his mother, brave and fighting for him. Giving into the terror, refusing medical treatment left right and centre, doubting doctors, this is all going to destabilize him even more.

You may not be able to give him the best treatment there is, or get the help as quickly as you want, that part if out of your control. But your behaviour around him is going to affect how he is. He is living in a place of fear, and he needs his mum to be as steady and calm as she can be. If you want something to control and change, how about yourself? I remember watching my mum weep with desperation, and I have never forgotten it. He needs you to be his anchor.

I recommend some good books, join an advocacy organisation and a self help supporter/carer group.

Very wise advise. sometimes we as parents are so blown away because our world has been ravaged that we forget what our child must be going through. I have to say being disabled myself that I never realized how much I was capable of. Oh yeah i fall apart in front of my son all the time, and in the midst of my pain he tells me it will be OK. It should be the other way around. Don't get me wrong. I have been his rock through all this, but, yeah I'm a flawed human like all of you. Shit I'm barely staying well myself.

I NEED TO MAKE THIS CLEAR. I ONLY QUESTIONED DRUGS WHEN THIS FIRST STARTED. I HAVE NEVER MEDICATED HIM ON MY OWN. I FOLLOW THE DOCTORS ADVISE ;) . I just want to here what you guys think about whats going on with him, and what the PDOCD'S are up to. I think you are the experts. Yes I'm a mom that wants her kid back, but I have no clue what he is feeling and, thats why I'm here. You are very wise, and thank you for the wake up call.

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I'm sorry if my response didn't come off as compassionate. This is a really grueling situation to be in.

But I think that you are going to have to choose to work with the docs, and trust them. They do have a medical education. They generally do the job because they want to help people. They aren't all incompetent people out to poison him and send him back out into the cold.

The problem with the mental health system is that it is a system. It takes very sick people, with unique sets of problems, and allocates them within a system, like giving them appointments, diagnoses, insurance codes etc. Which can all feel very dehumanizing and unfair. But without this system, no one would get seen or cured or anything, it would be abject chaos. Yes it's imperfect. It's slow. If you had your way, hell, if I had my way, your son would be treated different. But we don't.

What worked for me and my family was to wait out the awkward first few months, after referrals, going along with everything we could stand, until our foot was firmly in the door, and we were stronger and smarter to kick up a fuss when it was needed. We had the benefit of professionals knowing us and knowing that when we kicked off it was because it mattered and not because we were mistrustful and dramatic. We had doctors who knew us and my history responding, rather than freaking out to professionals who hadn't seen me before.

My advice is watch and wait. Unless he is going to die imminently, just try to go along with what is going on, and then once you have a rapport with a doctor, and that doctor has had a fair chance to explain the treatment plan to you, then think about trying to complain.

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I'm sorry if my response didn't come off as compassionate. This is a really grueling situation to be in.

But I think that you are going to have to choose to work with the docs, and trust them. They do have a medical education. They generally do the job because they want to help people. They aren't all incompetent people out to poison him and send him back out into the cold.

The problem with the mental health system is that it is a system. It takes very sick people, with unique sets of problems, and allocates them within a system, like giving them appointments, diagnoses, insurance codes etc. Which can all feel very dehumanizing and unfair. But without this system, no one would get seen or cured or anything, it would be abject chaos. Yes it's imperfect. It's slow. If you had your way, hell, if I had my way, your son would be treated different. But we don't.

What worked for me and my family was to wait out the awkward first few months, after referrals, going along with everything we could stand, until our foot was firmly in the door, and we were stronger and smarter to kick up a fuss when it was needed. We had the benefit of professionals knowing us and knowing that when we kicked off it was because it mattered and not because we were mistrustful and dramatic. We had doctors who knew us and my history responding, rather than freaking out to professionals who hadn't seen me before.

My advice is watch and wait. Unless he is going to die imminently, just try to go along with what is going on, and then once you have a rapport with a doctor, and that doctor has had a fair chance to explain the treatment plan to you, then think about trying to complain.

Once again, Brilliant. Thats what I'm doing. If I were to unleash the horror that I feel it would only hurt my son. I had a manager at mental health try to pull some real weird stuff on us. She didn't like that I called too much, 4 times in 3 months! So we had a little meeting. I had to swallow all of my pride and then some for the sake of my son. This manager likes to feel in control so I let her, for now. It may not be much, but It's all my son has. You can feel a sense of healing there, and my son feels it too. After all it's about him not me. I do appreciate your candor. It does nothing but help me when I here from someone who has been there. You tell me things I wish my son could, and I thank you. For all you have gone through you seem very grounded, and wise. I only wish that you had achieved this in a more peaceful way. Tomorrow I get to take him back to the doctor, and to my surprise we made it through the week. I thought he would fall apart without medication, but he did better than I thought he would. We are trying new meds for him this week. Please pray, or wish him luck.

Thank You.

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