NEw DX for son

[RedTulipMom]

Well they changed my 17 yr old sons dx from bipolar with psychosis to Schizo-affective disorder! Anyone know anythign about this?? From what im reading it is ..he has a mood disorder (bipolar) and a thought disorder (schizophrenia). I didnt even know it was possible to have both! this is heartbreaking. Anyone else know more about Schizo-affective disorder?

 

[stanneberg]

Well they changed my 17 yr old sons dx from bipolar with psychosis to Schizo-affective disorder! Anyone know anythign about this?? From what im reading it is ..he has a mood disorder (bipolar) and a thought disorder (schizophrenia). I didnt even know it was possible to have both! this is heartbreaking. Anyone else know more about Schizo-affective disorder?

I don't really know about this disorder, other than the fact that they tried to diagnose me with the same thing. It didn't stick. What I have noticed about being diagnosed with anything mental, is that the doctor observes the patient, takes these observations and turns to a book that places a particular behavior in a particular catagory. One day I could be diagnosed as bipolar 2 with rapid cycling, the next day could be bipolar 1. At one point, I was bipolar 2, with rapid cycling, ADD, ADHD, OCD with a side of akathasia to boot. The medicines I was taking created new side effects which changed my diagnosis . . . regularly.

I'm not a Psychiatrist or a Psychologist, but after my own experiences, dealing with this illness, I have adopted the mindset that ANY diagnosis is not "cut and dry!" It could change from one day to the next.

Listen to the doctor's, but listen to God as well. He is the only one who knows for sure. The Bible says: "As a man thinketh in his heart, so is he . . ." If we allow others to tell us "who we are", we may just start believing them . . . even if its wrong.

Stephen Tanneberg

 

[AwesomeMachine]

Dear Karen,

I know you have been through much pain, and it is a relief to get a diagnosis from a doctor as to what the problem is. Then, I sense you were heartbroken again when the diagnosis changed to something worse. Let me try to unravel some of this for you.

The medical community uses words differently than lay people. To you and I, mood and thought are intimately linked. If either your mood, or thought have problems, both will be affected. Doctors see thought as conscious, cognitive ability to learn objective data; or solve real world, tangible problems. My idea of thought goes a little beyong this. In fact, thought is how we direct our actions. In people with mental illness, their heart is wounded. The needs of their heart, what they didn't get emotionally, rules the mind. If the patient doesn't know how to get their needs met by giving and receiving love, reality becomes distorted. The patient develops a view of the world, which is compatible to them not getting the love they deserve.

I had bipolar disorder, and schizo-affective disorder; and a few other things. It took eight years to recover, but I am totally healed of all of it. I have no more symptoms, ever. I have the love of Jesus in my heart all the time. Sometimes I have so much love I just have to give some away to other people. In fact, I am always looking for people to love, because Jesus loves me so much.

All of your son's problems are linked to low neurotransmitter levels. Most psych meds help with neurotransmitter level in some way. There are a few exceptions. I have a feeling your son has attention deficit disorder. Do not tell any doctor if your son has an addiction problem.

Here are some questions to ask yourself:

Does my son lose track of time more than two hours off, frequently?

Does my son lose things frequently?

Can my son follow a sequential list of instructions, using them to complete a task?

Does my son have trouble organizing?

Is my son rebellious?

Does my son smoke marijauna to help concentrate?

Is my son addicted to opiates, alcohol, amphetamines, or other chemicals which supplement the neurotransmitter,
dopamine?

Does my son make decisions which hurt him?

Is my son ever combatative with other people?

Is my son compliant as a means of coping?

Does my son have trouble sitting down, alone for some quiet reflection?

Can my son retain what he reads?

Does he have to go back and read things again?

Is he able to pay attention to subjects he finds boring?

Is his performance commensurate with his intelligence level?

Here are the answers for a person with ADD: yynyyyyyyyynynn
Answering more than two according to the key is evidence of ADD. Before you go back to the doctor, read everything you can on adult ADD. Prepare yourself.

ADD frequently goes undiagnosed because of chemical addiction. The treatment for it is Adderall. This has been a widely abused drug in the past, and doctors will not prescribe it to people who have drug dependancy or abuse histories. The doctor will simply refuse to diagnose the patient with ADD, rather than give the meds to a patient who might abuse them.

The problem with this is the person is constantly being treated for the wrong thing. Our psychiatric system is largely a processing and categorization system. People are not treated as individuals. If you have already told the psychiatrist about any drug dependancy issues with your son, try and use the questions I have given you to convince the doctor your son needs help with ADD. If he refuses, start over again with a new doctor, and don't tell the new doctor about the old doctor. Just come in as a new patient.

The doctor will always start with ritalin for ADD. You must allow ritalin for your son. After about a week, call the doctor and tell him the ritalin is causing nervousness, and headaches. Then he will prescribe Adderall. Once you son is on adderall (D-amphetamine combo), a suitable SSRI like Celexa (citalopram), a non-debilitating atypical antipsychotic such as Risperdal, and sleep medication such as Ambien or temazepam; he will feel much better.

Do not give the doctor this list. Know what you are doing, but don't let the doctor know that. If he prescribes a drug, and it isn't one of the ones I told you about, wait about a week, and call to tell the doctor it doesn't work. If he says to wait a little longer, call the next day. Keep doing that until the doctor gets it right. Too many doctors think the treatment for mental illness should leave in place some suffering. This is idiotic. Get your son what he needs, but be smart about it. Don't let the doctor know you know what you are doing. If you want to make a suggestion about meds, be insistent. Don't take no for an answer.

Your son can be totally delivered, free from all the pain. First he needs the right meds.

If I told you about myself at age 17, I am sure you would think it was him talking to you. Be tough. Get some help for yourself, too. A good counselor can do wonders. Everyone is under deceit about who they really are, and how much they have missed from loved ones. This can cause mental illness. Most people really need to see a counselor. In all my years I have not met one person who is wise. Wisdom is knowing yourself. Then you can know God.

 

[Jeshu]

Well they changed my 17 yr old sons dx from bipolar with psychosis to Schizo-affective disorder! Anyone know anythign about this?? From what im reading it is ..he has a mood disorder (bipolar) and a thought disorder (schizophrenia). I didnt even know it was possible to have both! this is heartbreaking. Anyone else know more about Schizo-affective disorder?

Karen, sorry to hear about your son, he has been diagnosed with the same illness as me.

"Schizoaffective Disorder is characterized by the presence of one of the following:

• Major Depressive Episode (must include depressed mood)
• Manic Episode
• Mixed Episode

As well as the presence of at least two of the following symptoms, for at least one month:

• Delusions
• Hallucinations
• Disorganized speech (e.g., frequent derailment or incoherence)
• Grossly disorganized or catatonic behavior
• Negative symptoms (e.g., affective flattening, alogia, avolition)

(Only one symptom is required if delusions are bizarre or hallucinations consist of a voice keeping up a running commentary on the person's behavior or thoughts, or two or more voices conversing with each other.)

The occurrence of the delusions or hallucinations must be in the absence of any serious mood symptoms for at least 2 weeks. The mood disorder, however, must be present for a significant minority of the time. The symptoms of this disorder also can not be better explained by the use or abuse of a substance (alcohol, drugs, medications) or a general medical condition (stroke).

• 
  
  Criteria summarized from:
  
  American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders, fourth edition. Washington, DC: American Psychiatric Association.

For more information

• General Treatment of Schizoaffective Disorder
• Online Schizoaffective Resources
• Schizoaffective Support Groups "
  

Got this from (http://psychcentral.com/disorders/sx4.htm)

Hope this has been helpful.


Gerry

 

[RedTulipMom]

Thanks everyone! He was already diagnosed with ADD over 2 yrs ago and was taking Adderall and he was getting stomach aches from it so they switched him to strattera, which was making him nausceous and it was an all day fight every day to get him to take the meds and we eventually just let him go off them. He was also diagnosed with FAE (Fetal Alchohol Effects) by a neurologist about 6 mos ago. (his birth mom drank through the whole pregnancy, i adopted him). Anyways..YES..he fits under the category of ADD according to the above list. YES he fits under the category of Schizo-Affective Disorder according to the above criteria. The scariest part is the hallucinations and the ongoing delusions as well as him hearing voices. I know he cant just be ADD. People with ADD dont have hallucinations or delusions. I WISH he was only ADD.
Now my question is...should i also have him on the ADD meds?? He is on anti-psychotics (Geodon) and mood stabilizer (depakote) at the present time! Hes already taking 5 pills, i hate to have to have him on adderall too, but i noticed he still has SUCH a hard time focusing on anything more than 5 mins.

 

[AwesomeMachine]

I weep for your son. I feel his pain. Would you post his first name so I can offer up my afternoon prayer for him.

Adderall used to give me stomach aches. I used to drink baking soda water to get rid of the stomach aches. They really hurt bad. I couldn't stand it. The baking soda water took that away. It sounds like his system is very toxic. When a person is on that much medication, their system becomes toxic. Smoking cigarettes makes it way worse. I don't know if he smokes. I hope not. There is a chemical called BHT, available from vitamin research products (VRP) online. You can do a liver cleanse with him, but the BHT keeps all the toxins in the liver from damaging the body when they come out. He really should take at least 700 mg / day BHT in order to prevent damage from liver cleansing.

There are several ways to cleanse the liver, which, in turn, allows the body to cleanse itself. The first way is with "Milk Thistle Extract". This is commonly available extract, found in capsule form quite routinely. The second method I might suggest cleanses the liver very quickly, with no toxins getting into the bloodstream. Coffee enemas cause the liver to drop all of its toxic bile out the bile duct, into the small intestine, from whence it is excreted through the large intestine. This may be difficult to do with a child, so I mention the milk thistle.

Keeping the body free from toxins is half the battle. Good nutrition is not enough for people who take medication continuously. They need to supplement their diet. I cannot go into how to supplement a diet, because it is very complicated. About four multivitamin tablets per day is better than nothing. It will help to some degree. Exercise is also important, and spending time with you, getting the love he needs.

Love is the most powerful thing in the universe. It is the foundation of things. God's love is behind everything. When we think we are doing something for God, it is as if a child went to kindergarten and drew a picture. Then the child brought it home to his Father. God The Father is very appreciative of this little gift, and He makes us feel appreciated. We don't give God anything He really needs. The world is saved with or without any individual. Just the same as a father goes to work every day, and his four year old child is unaware of what goes on in Dad's life, so it is with us and God. We have no idea what God is doing all day. His ways are so far above our ways. The evil of each day is sufficient for itself. Do not go into the past or future to get more. Let God take care of those. The present is all we have. Other than that we know nothing.

I hope your son will feel better. It sounds like you have a lot of love to give him. I applaude what you have done in adopting him. I want you to know I have pray for you, too.

 

[RedTulipMom]

I am really upset with Joeys pscyh doctor!! He is not returning my calls. Joey went off the zyprexa last friday and doubled the Geodon from 40mg twice daily to 80mg twice daily. By sunday night he was manic and couldnt sleep and anxious with his hands shaking! By monday his blood pressure had shot up to 169/124. I called the doctors office monday and the nurse told me he was on vacation and would call me when he got back Tuesday afternoon. I told her all that was wrong and asked "please make sure he calls i am afraid he might be on too much Geodon or something.". She told me to drop him back to the 40mg if his blood pressure kept high until we got a chance to talk to the doctor. WE were afraid to switch the meds without talking to the doctor so went ahead and gave him the 80mg monday night and Tuesday morning. Then when i didnt hear from the doctor i called the office on Tuesday at 3:30pm and asked if he was back from vacation and they said "yes he is but he is in with a patient. We will have him call you tonight after 5:30pm" i again reiterated about his blood pressure and shakey hands and not being able to sleep. The doctor never called Tuesday night and his blood pressure was still high. I still had 6 pills left over of the 40mg Geodon so Tuesday night i cut him back to 40 mg. And wed morning gave him 40 mg. I called the doctors office Today (wed) at noon and again asked to talk to him and was told he didnt start yet he will be in at 12:30. I asked if he could call and the nurse told me.."well he has 3 patients waiting right now, he usually makes his calls at night so he will call you after 7pm tonight" i told the nurse,,"Ya he was supposed to call me last night and never did, and i only have a few more 40mg tabs left and dont know what to do, could you PLEASE make sure he calls me". She was like "oh yes he will definitely call you tonight! Well here i SIT at 9:25pm and still no call from the stupid doctor. Joey still has high blood pressure, his hands are still shaking since Sunday night and the stupid doctor isnt even bothering to call. We only have enough 40mg tabs left for his 2 tomorrow and one friday morning....i dont know what to do! i dont know if he should even be on this Geodon at all. What if the doctor dont call tonight? i dont know what i am gonna do! Please pray for this situation!

 

[RedTulipMom]

The doctor finally did call me 10:30pm on Wednesday night and told me to bring him on on Thursday morning at 11:30am. We ended up sitting there waiting till 2pm cuz the doctor got caught up at the hospital. he did drop Joey back to the 40mg twice daily of the Geodon. Plus he added in 50mg of seroquel at night for a week..then 100mg of seroquel at night. The reason for adding the seroquel is hes had a hard time sleeping on the Geodon..so the seroquel will help him sleep better and the seroquel will lower his blood pressure cuz it has a side effect of lower bp apparently. Geodon and Seroquel are both anti-psychotics. A full dosage of seroquel would be about 800mg a day..but would make you sleep all the time like zyprexa. Thats why he said he is only gonna have him take 100 mg a day of the seroquel..just to help him get to sleep. The Geodon is really what he is using for the anti-pychotic. he said he'd probably keep him on the 40 twice a day for 2 weeks..then put him on one 80 and one 40 a day for two weeks and then finally to the two 80's a day ....apparently he had jumped the dosage up to high at first. sighh....

 

[Shalia]

Well they changed my 17 yr old sons dx from bipolar with psychosis to Schizo-affective disorder! Anyone know anythign about this?? From what im reading it is ..he has a mood disorder (bipolar) and a thought disorder (schizophrenia). I didnt even know it was possible to have both! this is heartbreaking. Anyone else know more about Schizo-affective disorder?

One very important thing that your son should consider doing is mood charting if he's not already doing it. I have an excellent mood chart available on Excel <if you have it!> that I'd be happy to send along to you. My e-mail is available through my profile if you'd like it...

It really helps doctors see what we are going through on a day to day basis, not just when we go in there. Cause sometimes i don't even remember what I was doing yesterday, let alone how I was feeling two weeks ago. A mood chart gives the doctor a chance to see how things have been progressing, and can help with an accurate diagnosis. It's also helpful, if you live with your son, to fill one out independently for him that can be brought to his doctor. Then the doctor can see how you think he's doing via how he thinks he's doing. It's always nice to have independent verification...

I hope things work out for you. Let me know if you want that mood chart.

 

[Shalia]

Did they give your son a baseline EKG before giving him that high dose of Geodon? If not, make sure you get him in for one. Geodon can cause heart problems, and a baseline EKG is really not optional.

Here's the copy of the official PI sheet for Geodon... hope it helps!

http://www.pfizer.com/pfizer/download/uspi_geodon.pdf

Also, Geodon *tends* out of all the AP's to have an antidepressant effect, so watch for any mania signs. It's not a guarantee or anything, but it's a possibility, so keep an eye out.

For myself, honestly, nothing killed psychosis symptoms like old fashioned Haldol. I took a *really* low dose, but it worked better than anything else they handed me. <And I've tried all the atypicals barring Clozaril cause I'm not up for weekly blood tests.>

 

[Alive again]

Dear Karenmarie, What a lot you are going thru and keeping track of!!! I am and will be praying for you. When it is our children it does indeed break our heart and exhaust us. Do you have options in your area for docs??? Could you switch? That bp was too high and I would have recommended going to ER. Meds and side effects can be difficult with kids. I would imagine they are pushing to control the pschosis symptoms (hallucinations) and help him to sleep. If he is truly bp as well, he will need a mood stabilizer as well. Yes, he made need to go back on a med for ADD, but right now there is so much else changing you may need to wait until other stuff stabilizes. The tern schizo-affective covers a lot of territory. It is a combination of schizophrenia type sympotms (schizo) and a mood disorder (affective-depression or bipolar). There is also a forum here for schizophrenia, but I don't know how active it is right now. Jeshu gave you some wonderful info and links. I know people with this disorder and with the right meds, they can be stabilized. Do not despair!!! We are praying and will be here for you! And God loves your son!!! I will be praying for wisdom for the doctors and wisdom and grace for you!!! Also if you are having enough issues in the home, there may be a day treatment program for kids in your area.