Family and Caregiver Schizophrenia Discussion Forum

How to Find Best Doctors for Schizophrenia?


#1

My adult 20yo child is in a hospital mental ward diagnosed with Schizoaffective Disorder. This is their third stay in 3 different hospital mental wards within 5 years, but always with a 2 weeks recovery before. From previous doctors it seems this condition is said to be uncommon and each doctor is taking their turn without much experience/results it seems. Currently they are at the 3rd hospital and the doc there has stated he can’t figure out what to do to help, but Doc has decided he wants to make them a ward of the state to gain total control over their healthcare, taking out rights, so they must do what he wants in treatment forever. Despite the fact he cannot figure it out and won’t turn them over to another professional for treatment. We are still hoping to keep them from gaining total control over them, but my adult child has been mostly nonverbal.

Compounding this is the they took away the anti anxiety drug so CNA’s supposedly can help in self care since they deemed them sluggish. I told them another med was likely the culprit for sluggishness since we saw this before. But, because my child an adult so they can do whatever they wish independent of our information. Now they break out crying and throwing themself to the floor now we are told. Could be a result of taking away the anti-anxiety meds. Seems that way.

Bottom line, I wanted to find a doctor successful in treating Schizoaffective Disorder in Wisconsin so my adult child can recover. The docs in the current hospital mental ward seem to have no success after 3 weeks and have thrown up their hands and want them to be a ward of the state under their care permanently and no one elses, with rights taken away by the courts.

How can I find a successful doctor that may be able to help my adult child before the current hospital takes rights and life away, without showing any progress of care under them? We are in Wisconsin.

Any thoughts or suggestions would be welcome.


#2

I already have an appt. tomorrow in my city with NAMI.


#3

Sounds like your family member is quite ill. I’ve been inside these places and watched this scenario unfold . They won’t keep them forever and take away his rights forever. I have seen patients stay for 3 months (under the same terminology you are using). They are moved to the state hospital if they need to see the expert doctors at the state hospital. I knew one gentleman at the ward I was in have to stay 3 months, was moved to the state hospital, became well, and we chat sometimes on Facebook.

They won’t keep him forever, they don’t do that anymore. He will be there longer and hopefully discharged when not a danger to himself or others.


#4

I can’t imagine the hospital keeping your son forever. That was done years ago. Here is a link about the deinstitutionalizing of the severely mentally ill. I see my daughter’s hospital visits as a respite for me and her and the opportunity for her to get needed help. It’s almost impossible to force hospitalization on someone unless they are a danger to themselves and others.

Here is the PBS link: http://www.pbs.org/wgbh/pages/frontline/shows/asylums/special/excerpt.html


#5

I am sorry that you are having so much trouble with the mental health care system…we have all experienced hardships with finding good care for our loved ones… First of all many of these illnesses like sz and sza can be controlled and symptoms can be put into remission with correct and consistent medication and a stable supportive living environment, but seldom are they actually cured…even with good consistent care the symptoms can flare up unexpectedly at anytime.

As for your son losing his rights…I understand the concern, I had the same concerns when my son was your son’s age…my son was extremely ill at that age…I ended up taking full guardianship of him myself. That prevented him losing his rights to the courts and being left under their care. It also enabled me to fully advocate for the best care I could get for my son…at the time our county here in Ohio had a Mental Health Ombudsman…many but not all counties/cities have them…and they are a virtual wealth of resources for mental health care. It was that man that lead me to the best care at a local Mental Health Care center that had some amazing doctors at the time…I got him a case manager and a home health nurse…after securing his SSI benefits and medicaid (had I not gotten benefits for him like that he and I may have ended up homeless financially so it was critical) …anyway…long story short…I took charge at a time when my son was unable to for himself…he needed a sane rational thinking adult (who loved him) to take over the reins of his life and get him in a good place…I did this when my son was 21…he is 32 now…I have retained guardianship and rep payee status with him…but only because it works well for his life…he is much better, major symptoms all in remission now…we live as room mates more than anything…but I never underestimate the key factor I play in his overall stability. He still will have days when he flounders, not often but they happen, and when it does happen I am still here…to help him get his footing again…My son’s official diagnosis was Disorganized Schizophrenia and in the beginning my son could not speak coherent sentences at all and often would not talk…when seeking a doctor you need one not afraid to treat aggressively and think outside the box…and one that stays abreast of all of the latest studies and research. My son eventually ended up on an old school medication (Clozaril) and he takes Depakote for a previous seizure condition and to stabilize moods…before we found the right meds he was on dozens of meds that did not work or made things worse…if I had not been there the entire way to speak clearly and accurately on his behalf…we would never be as well off as we are today…Just my experiences and I know everyone is different and has to go about things there own way and I respect that…My best to you and your family.


#6

Chances are that the only way your child will receive treatment is by being court ordered and losing their rights.

I have known family members (through NAMI) who are shocked by this, but your son will regain his rights when he is well. The commitments and loss of rights are time limited (six months is longest for first commitment [see link]). Treatment can be inpatient OR outpatient.

The doctors are not allowed to treat him until he is involuntarily committed. They have to do it that way where I live too. Three weeks is not long enough to trial all the different medications that might help your son.

It’s scary, but unless a person is voluntarily accepting and participating in treatment, involuntary commitment and treatment are the only way to get treatment in the USA.

Those doctors are trying to help your son. It’s very rare to get this type of help in the US.

He will be in the hospital for a very short period of time relative to commitments in Europe. Unless he remains severely ill and cannot manage to keep himself fed and safe, they will only keep him inpatient until he is stabilized.

Let the doctors do their job and try to help your son, is my advice. Since they work in the hospital, they are quite familiar with who will benefit from involuntary treatment and doctors would never do this if they did not see it as the only way to treat a person.

SZA and SZ are not rare; one percent of the population develops these illnesses. It can take months to find a medication that works as only 40% of people respond to each medication.

Please read up on how incredibly hard it is for most people with these illnesses and a “lack of insight” to get treatment. As far as I’m concerned, if you stop the doctors, you are throwing away a rare chance for your son to get help.

http://www.treatmentadvocacycenter.org/browse-by-state/wisconsin

Best to you and your family. I hope your son receives treatment and recovers.


#7

Hi Pixelpusher,

Having been there with my own daughter I think HereandThere gave you some excellent feedback. Involuntary commitment is a chance to have your son treated for his illness. I sometimes wish my daughter could be committed for about 3-6 months so that doctors can really examine what medication works or not work. I agree, give the doctors a chance to help your son, Good luck to you and keep us posted to how’s he doing.


#8

Problem is my adult child was only in the ward for 3 weeks and they discussed with them the medical hold and civil commitment against our wishes since we asked they have our lawyer there since they are still not fully recovered and don’t understand things. They also setup a court date without discussing it with us and assigned them a public defender even through we have a lawyer for them. The court date ( 3 days after they told us) was so fast we didn’t have time to prepare. Also, when we pointed out they had neglected to change and shower them for 3 days and my wife found crusty urine in their underwear, they got mad at us and now everytime we visit them they call security up to be at the desk. Talk about being retaliatory! My wife works in the personal eldercare field and saw it as neglect of basic services. This whole thing is compounded by the non cooperative methods the hospital is using with us.

Honestly, I feel they are jumping the gun on this. They seem not to find the right meds and so because of that they want them around longer to practice on. Not sure why they don’t move them along to a professional with success in treating this issue, hence I’m looking for best Schizoaffective docs in Wisconsin. Someone suggested a Behavioral Health professor at the Teaching Colleges.


#9

What type of hospital is your son in – Is it a private or public hospital. Also what prompted your son to be in the hospital in the first place. Was he a danger to himself or others. I’m so sorry of what your son and you and your family are going through.

At my daughter’s worse mental health symptoms the longest she was hospitalized was only two weeks and imho not long enough to really help her.

It just isn’t fair our children suffer so much.


#10

Public hospital, I think. My adult child now told the staff they are afraid of the doctors because the people have been talking to them about taking them to court. They will be even more frightened to have been dragged to court before the staff there even allows them to come out of the shizo problem. It’s 3.5 weeks now and no seeming progress, except now they’ve stopped the anti-anxiety meds and pulled back the 1to1 helper even though they told us they have thoughts of killing themselves! This place has a disconnect in diagnosis and care!! Our child ran down the hallway on New Years Eve to try to leave with us because they are frightened. My adult child asked us to NOT send them to a halfway house, which we don’t intend to do, because the staff maybe was talking about that to them.


#11

Is there any chance that your child is refusing to take or spitting out the medication the doctors prescribe?

That’s what mine did in similar circumstances.

If anti-anxiety meds were benzos, those are a short term solution because so addictive and tolerance builds quickly.

Of course you wouldn’t send your child to a halfway house, that is a good reassurance. Maybe some of the other patients are being discharged to halfway houses.


#12

No my adult child takes their medicine no problem for them and us. They informed us that the voices were telling them to kill themselves, but they removed the 1/1 nursing assistant and the anti-anxiety meds. A real disconnect of care! These people want to control their care and they are not making any headway and tell us they don’t now what will work and they want it court mandated to keep care under them! Also, they will drag them to court. Imagine a shizo patient being dragged to court in someone else’s car they don’t know and then being dragged back to the ward! Do they want them to fear healthcare treatment!? This is a nightmare for our adult child and us!


#13

Most of us have been through similar difficulties. It’s systemic in the USA. There’s no other way except a court order to get treatment unless a person is in good enough shape to participate, but with serious illness, lots of people lose the ability to participate.

I was shocked too when we first entered the mental health system. Truly, I am envious of anyone whose child is in the hospital instead of what has happened to our family.

Most have gone through the nightmare feeling of discovering there is no real parity or medical system for treatment of people with serious mental illnesses. It’s really awful and I’m sorry you’re going through it.


#14

Hi pixelpusher. When you write “they” may I ask who you are referring to?


#15

The benzos in my opinion are a double edge sword. It helps calm folks down but are highly addictive and then the addiction creates another set of problems. Hang in there. It sounds like you are doing everything you can. Also, try to take care of yourself ----- I know its easier said than done. In the beginning of my daughter’s illness I was a complete wreck and taking care of me didn’t even enter my mind.


#16

My adult child. I don’t want to specify gender or mention the hospital yet.

Bottom line is I want to have the court dates rescheduled so we can have our doc and lawyer discuss things with my adult child as they are still far from better. I do not want this institution that has been non cooperative and non communicative with us and ignore my adult child having independent representation continuing care under them. I cannot imagine them dragging my adult child into court. They will ride out of the ward in someone else’s car thinking they may go home and instead go to court being asked questions by a judge. Thinking during the trip back to the ward, what did i say to get put back in the hospital?? The hospital staff has already told us they are afraid of the docs because they said they were taking them to court. Our adult child will be afraid and skeptical of future health care thinking they might have said something wrong. After 3 weeks why are they rushing to court? They haven’t asked to leave. Tell me this isn’t just about money to them.


#17

Today my adult child had a hearing for medical hold. My sweet child was handcuffed and brought in by police to the court from the hospital. How barbaric! My child was already starting to fear doctors because of this and now after being lead in to court, not asked any questions, and led back out thinking what did i do wrong or say wrong to land in court and have to go back to the hospital!?! Meanwhile the doc phoned in his testimony, but my child had to appear before the court and be traumatized!!! All so the Doc can finish his experiments, while telling the court he has no idea why she isn’t getting better. The hospital had my child for 4 weeks now and is now starting a 4th medicine.


#18

I’m really sorry you’re going through this. It’s traumatic for you too.

How often are you able to visit your child in the hospital?


#19

We visit daily and talk to the staff on med changes and what care is given, as well as mood and symptoms. We don’t see other patients with caring people coming to see them daily. Maybe the Docs and staff don’t like caring people that ask too many questions.


#20

I’m really glad you get to see your child every day; I’m sure that’s helping and your child feels support and love.