Archive for December 19th, 2007

A Diagnosis By Any Other Name…

Wednesday, December 19th, 2007
arosebyanyothername
photo by Jeff Epps

This is a good time for me to talk about my son’s diagnosis of schizoaffective disorder. Or is it spelled schizo-affective disorder?

I received an email from the blogger at Me and My Beast, Jason Wilson.

Hero,

I’m curious, how did your son’s diagnosis change from schizophrenia to schizoaffective?  The reason I ask is that nothing from what I’ve read (and I apologize if I’ve missed something so far) indicates that he has a mood disorder as well.  Does he have a mood disorder and were his psychotic symptoms present during a “normal” mood (i.e. not elevated extremely to be manic and not extremely depressed)?  As you may have already read from my blog, I have schizoaffective as opposed to schizophrenia because I also have bipolar so I’m just curious not that it really matters whether he’s diagnosed with schizophrenia or schizoaffective as the psychotic symptoms are treated in the same fashion.

And I answered:

Thank you so much for the question. I KNEW I would learn a great deal when I started this blog. Nobody explained it to me before, that schizoaffective disorder is schizophrenia combined with a mood disorder. That makes sense now. I suppose I could be blamed for not studying it more.

Now I am not exactly sure what mood disorder means, but I will strongly agree that my son is having trouble with his mood. As I detailed in Onset of Illness , one of the first clues I had that something was going seriously wrong was his crankiness. He also seemed to be sad and negative much of the time.

At the one visit we had with Dr. DB in May, the subject of DS’s hospitalization for schizophrenia in 1998 came up. DS wanted to argue about the validity of the diagnosis of schizophrenia. Dr. DB dismissed the whole subject, rather wisely I would say, to avoid a whole lot of ugliness of mood on DS’s part, by asserting that the diagnosis names do not matter… he treats the symptoms.

I can understand that. With my previous experience with my son’s diagnosis of autism/Asperger’s, I learned that the definitions in the DSM can change. That could be one reason why DS was not diagnosed with it until he was age 17.

To answer your question more directly, I would say the diagnosis of schizophrenia was given in 1998 and the diagnosis of schizoaffective disorder in June 2007. He still has the diagnosis of autism or Asperger’s syndrome and always will. I remember being told a long time ago that it is not very unusual for a second thing to go wrong with the brain once one thing has gone wrong. An interesting thing about autism is that in the old days (like before 1940) it used to be called childhood schizophrenia. It is a good thing they renamed it, because calling it “childhood___” gives you the false impression you can outgrow it.

You asked if the psychotic symptoms were present during a “normal” mood. I think no. DS is not always very open, and my best guess is the mood disorder came on first. Then again, he has always been somewhat inclined to paranoia, or what they call in autism circles “irrational fears.” I do not believe he was having major delusions or hallucinations until after the negative mood change was well underway.

I did not hear that DS’s diagnosis was schizoaffective disorder until after his second hospitalization in 2007, in July. I was trying to get the paperwork done to get him into a personal care home, and they wanted to know what his diagnosis was. When I asked DS (when he was not in a mood to deny being ill at all) he would say he was bipolar. That did not sound right to me because I though bipolar meant highs and lows in mood, and nothing at all to do with paranoia, delusions, and hallucinations. When he was being delusional he would simply say he was a drug addict, because he thought the drugs he was hallucinating about were making him high and causing him to become addicted.

Anyway, I called Wellstar Behavioral Health hospital to get the diagnosis. I was surprised when a social worker actually answered my question… surprised because I assumed they would brush me off like they usually would do when I would ask for information that could be construed as violating DS’s privacy according to HIPAA. I suppose because I explained the situation about filling in the forms for the personal care home, they may have cut me some slack.

As Jason and Dr. DB said, names probably do not really matter since the symptoms are what are treated. 

Then again, nobody with cancer or diabetes is ever told, “don’t worry about the diagnosis; we are just going to treat the symptoms.”

Pharmacy Foul-Ups & A Good Report on the PCH

Wednesday, December 19th, 2007

Today I got a call from CA, the owner of the personal care home. She was having difficulty refilling DS’s prescription. He had only one tablet of Risperdal left for today and he is supposed to take two. (How did that happen? The last dose in the bottle should have been two tablets. Oh, well.)

CA’s problem was a pharmacy foul-up. The Rite-Aid pharmacy (formerly known as Eckerd’s) that is near my house tried to transfer his prescriptions, including a record of one refill being allowed, to a pharmacy near CA’s house in Douglasville. They mistakenly sent them to a pharmacy in Atlanta. The pharmacy near her house suggested she call the doctor for a refill. She tried to do that and only got a telephone answering system. (I know. You are required to listen carefully to the choices and press the right numbers to talk to the right person or voice mail box.)

I understood her frustration, and I offered to make some calls to try to straighten things out. First, I told her I would be leaving the doctor’s office out of it. It was the pharmacy’s fault, and this doctor’s office is an even greater pain to deal with,  in my opinion.

In the end I discovered that the pharmacy in Atlanta that had the prescriptions, an independent store named Pay Low,  was only twelve miles from where she lived, and they offered free delivery. I agreed. I was glad things were cleared up this time with very little trouble.

I have had my complaints before with Rite-Aid. They did not have Abilify in stock at all, when DS first needed it last summer. Typically when I try to refill the Risperdal, they do not keep a sufficient amount in stock, and they give me only a three-day supply, at first. Then I have to return for the other twenty-seven days worth. I asked them specifically with a “please” to stock it, but a pharmacy tech tried to explain that it was company policy to treat this drug this way. I suppose they have their reasons. I warned CA about this problem and advised her not to delay refilling prescriptions.

On a brighter note, I spoke with DS today. He seemed to be in a somewhat conversational mood. I filled him in on family plans for Christmas and assured him that we would be picking him up. I tried to catch him up on news of his brothers and sisters.

He filled me in on his doings. CA has been taking him shopping almost every day. “Christmas shopping?” I ask. Food shopping he says, and other kinds of shopping. Also, she has taken him to eat in restaurants quite a few times. (I forgot to ask who has been paying, but DS does have $97 a month to spare after paying for his PCH.) “How very nice,” I observe. He never got that kind of treatment at his other personal care home. He said he likes it in his new PCH much better. I am glad of that. This is a very unusual PCH because it is the home of the owner who is also the “staff” person.

It sounds to me like CA does not let DS stay at home alone much. She has taken him to church with her and on walks with the dogs. That is very wise on her part to keep him busy and to keep an eye on DS. It sounds like we are very blessed right now.