Archive for the 'Medications' Category

From Weight Gain to Extreme Weight Loss

Thursday, October 15th, 2009

It has been a long time since I have posted, and I just want to give a little update on our recent concerns.

My son DS is still living in a personal care home, and thank heavens, except for occasional frictions, it seems to be working out. He has been there since December 2007. He refuses to have anything to do with a day program, but we have worked out a bit of a compromise with the caregiver to give her a break: DS comes home on the weekends.

A year ago this fall, DS was beginning to have some mood problems again. We felt the psychiatrist was not taking our concerns seriously. We made a change to another psychiatrist. Dr. K. made some changes and the moods seem to stabilize. In the meantime, we continued to be concerned about DS’s weight gain. Since 2007 he had gained about 50 pounds or so, after initially losing 20 pounds or so during the worst times of his fears and paranoias. The weight gain was most likely due to the Risperdal he has been taking since 2007 to control his psychotic symptoms. In many people, Risperdal will adversely affect a person’s appestat to the point that they can eat and eat and not feel full.

So there was a concern about his weight gain, and Dr. K. suggested we try a new drug to control DS’s psychosis. The drug was Abilify. We stuck with the Abilify for about three months. The good news is his appetite was reduced and he lost about 30 pounds. The bad news is that many strange behaviors began to crop up. A few examples of what I call strange: he was talking at the refrigerator one day for about a half hour. He was kneeling on the floor in the middle of the kitchen praying for at least an hour solid. (Our religious practice, such as it is, would be to pray in private out of sight of anyone else.) Also, we caught him a couple of times stepping outside the front door in the nude. He could not explain why he was doing that.

So anyway, these behaviors were new and somewhat different from what was going on before. He did not seem to be having the excessive delusional fears of before, or at least he was not vocal about it.  So Dr. K finally admitted that the Abilify was not working out. DS went back on the Risperdal with all the cautions about being careful not to start overeating.

The weird thing is for the next three months he continued to lose weight. His intake of food was obviously very reduced, so that is why he was losing weight. After losing another twenty pounds or so over a couple of months, Dr. K. said that DS would need to stop losing weight, or he would put DS in the hospital. DS got very upset about that, but I had to agree that the doctor had a point. He was under 160 pounds, and if things continued, it could get very unhealthy. So this feels very strange, but now we are trying to encourage him to eat. DS has been up and down a few pounds, but he seems to be maintaining at the moment.

It does not make sense why there continues to be weight loss even now that he is back on the Risperdal. These drugs don’t do the same things to different people, and sometimes even the same people at different times, I suppose. Also I think the Abilify may have disturbed something in his system that still has not been put right.

So there we are.

Weight Gain Problems as Mental Illness Stabilizes

Tuesday, April 29th, 2008

Last year after my son’s major psychotic break started and went on and on for six months, he actually lost weight… I guess about thirty pounds or so. The weight loss was a good thing because he was a little overweight to begin with, therefore the weight loss made him look to be at a healthy weight again… not too thin and not overweight.

solitary man in desert

photo by greggoconnell

Now as the severity of his mental illness symptoms has abated DS has started putting on weight again. I would say in three months he has put it all back and more. I went with my son to one of his psychiatric appointments and the doctor, after making a visual observation, decided to change one of his medications.

This is interesting how no weight scale is used. If I go to my regular doctor for anything at all, they make me step on the scale. I have never seen a scale in a psychiatrist’s office.  I have read that this is becoming a matter of debate. The majority of medications for treating mental illness cause weight gain. Obesity is becoming a major contributor in the USA for many serious health problems, such as heart disease, stroke, diabetes, etc. and any doctor should be concerned about this side of their patient’s health.

Then again, where mental illness is concerned, medication compliance is a serious issue. It is a common thing to hear of a person going off their medications and having relapses. I wonder if psychiatrists do not want to draw attention to a person’s weight gain because it will cause only more reluctance to take the medication. Psychiatrists and their patients have to walk a very fine line. This is something very hard to do where the science is so inexact, and the medications leave a great deal to be desired for being effective without serious side effects.

So, how do my son’s medications cause his weight gain? From what I have read they interfere with his body’s ability to recognize fullness after eating. He can eat and eat and eat (and he does) and never know when he has had enough. For the last couple of months I have tried talking to DS about this problem and let him know that he cannot trust his body’s ability to signal fullness. Also with him being a young man and not having much experience with dieting or counting calories or all that, I have tried suggesting to DS that he merely look at his plate, put a reasonable amount of food on it, eat, and be done.

I have also talked to CA (the woman who takes care of him in her personal care home) about creating fewer opportunities to overeat by cooking less at a time to begin with or putting away the extra food in the refrigerator after putting portions on their plates. She says, he always asks for more and it is hard for her to say “no.” I can understand this. I don’t always like facing his angry moods either, and I am always treading softly. (Yes, I am a wimp.) CA also made me aware that DS is buying cookies and sugary drinks in large quantity at the grocery store when they go together. He takes them to his room and eats them there, so there is no hope of her being able to regulate it. I agree this is a big problem also, so I have told her I will try to discourage him from taking as much money from his checking account, talking to him about having a plan for how he will spend his money.

This weekend when he was home for his visit, I tried to enlist him in talking about behavior modification to prevent overeating, using myself as an example. Yes, I could lose a little weight also. Last year while DS was losing thirty pounds, I was putting on thirty pounds. I had my pad of paper and pen and was writing down ideas and trying to elicit suggestions from DS. I then tried to get DS to do the same for himself. He was not interested. He knows he has a weight problem, but he says he is sure he can exercise it off. I expressed skepticism about that, but when I could tell I was not going to change his mind, I suggested we make a trial of it. We then talked about his exercise goals, and before his dad took him back to CA’s, I spoke with her by telephone within DS’s hearing about his new exercise goals. She wanted to argue with me about the futility of the program without controlling eating, and I had to say, “I agree, but we are making a trial of this, it’s a first step, and hopefully we can make adjustments in the future if we need to.”

Before DS left, all three of us, Dad, DS and I, took our turns stepping on the scale and we recorded our weights on the calendar. I am trying to make this weight loss program a supportive thing and hopefully not a competitive one. I never can get myself to lose weight for external reasons; I have to be ready to do it for myself, so I don’t know if I will be able to lose weight right now while I am dealing with some other stresses and goals in my life.   I have found weight loss to be rather difficult when I cannot make it my number one priority all day long.

From the way I see it, my son has just the opposite problem. He has very little to do all day long, so I can see that eating and sleeping may be his escape from boredom. Also I still wonder how much his schizoaffective disorder has affected his ability to focus on a goal or any task for that matter. While his delusions do not appear to be as severe as they were last year, he sometimes does not seem to be “all there.” This falls in line some with what I learned in my NAMI Family-to-Family class. Mental illness has positive and negative symptoms, meaning it adds things (like delusions) that were not in a person’s life before and takes away things also.

Recollecting the Second Hospitalization Summer 2007

Wednesday, January 2nd, 2008

DS’s second hospitalization last year for schizoaffective disorder with psychosis lasted from July 13th through July 24th, 2007.

It began with a marathon session in the emergency room. DS’s grandfather (my dad) and I accompanied him. After we got in an examination room, a woman came in to do an evaluation. I am sorry I do not know her job title or name. She remembered DS and his grandfather from his previous emergency room visit, and after we were able to speak with her privately in the hall, she expressed her shock that he was back so soon. I now wonder how long she may have been in her job. Given our experience this year and all I have learned since, can it really be possible that it was a shock that he returned? My Dad spoke with her about our disappointment in the lack of communication we felt we had with Wellstar Behavior Health last time. She gave me the name, “Lily,” someone in a position there, and said I should speak with her if I ever feel communication is a problem again. I never did that, and I probably should have. 

It did not take too long waiting in the emergency room for arrangements to be made for the hospital transfer from Wellstar Kennestone Emergency Room to  Wellstar Behavior Health. What REALLY took so long was waiting for an available ambulance. We were there before noon, but DS was not transferred until after midnight. I wonder why mental hospitals do not have their own emergency rooms or triage area or whatever. It was not at all a pleasant experience with DS belittling or berating me constantly for causing him to be there. Finally around 10 pm, my dad, who is a very soft-spoken and gentle man, somewhat uncharacteristicly let it be known to DS that he was out of line. I was very grateful to Dad for that. I suppose it was not a necessity that we wait with DS for his transfer. They had a security person checking the room every few minutes. (Would that have been enough to prevent an “escape?”) However, he was sick and I did not want to leave him alone if it was humanly possible for me to be there. Also, I think anyone is justified in not wanting to leave a loved one alone in a hospital any more than absolutely necessary with nursing shortages and medical mistakes, etc. We had a very bad experience with my mother in this same hospital a few years ago. 

So, DS was transferred to Wellstar Behavioral Health in the wee morning hours on Saturday the 14th. On Monday morning, I believe, I received a telephone call from Dr. LT. Almost the first thing she said to me was, “it sounds like you have had a rough week.” I wondered if she knew that from talking to DS or from some reports from the emergency room. In any case, it instantly endeared me to her. (At last, a doctor with a bedside manner and who called me first!) I wondered if DS was assigned to her because of our complaint we made in the emergency room about communication.

This time DS was started on Risperdal, Depakote and Zoloft. He continued to take the Clonapezam. I did not visit DS as often in the hospital, but we talked on the telephone nearly every day. I noticed a big improvement in the delusions within 48 hours of starting the Risperdal.

During this hospital stay we (DS, his father and I) had our first ever meeting with a social worker, JC. He mainly wanted to establish where DS was going to be staying after his discharge. DS was certain he could go to live with another patient there named Mary. All the rest of us said that did not sound like a good idea. DS was very argumentative, interruptive and demanding the whole meeting. To finally reassure him that I was interested in his concerns, I took out my red memo pad and wrote down what he wanted me to about what he desired in a personal care home. That calmed DS down long enough to give JC about a minute to have his say. DS turned to me and said, “Why are you not interrupting him?” I said, “Because I want to hear what he has to say!”

little red memo book

After the meeting when JC was showing us out the security door he said, “You were really great. I do not know how you do it.” I was shocked. You mean, he does not deal with people like this every day? Well, obviously, I was feeling like I could not “do it” much more, at least not on a daily basis. That is why we were having a search for a personal care home. I must have said something that gave away my naivete at this time about how quickly I expected medicines or therapies to help DS get back to himself. JC gave us a warning to expect things to take some time. My mind has turned back to his warning again and again when I have been disappointed.

As I was saying in this post, A Place for the Young & Mentally Ill, I did have a personal care home identified by the time DS was discharged.

Uncomfortable Memories of Dealing with Severe Mental Illness

Friday, December 21st, 2007

This post continues the Recollections of summer 2007. This is covering the period of time between DS’s first hospitalization in June 2007 and his second hospitalization in July 2007 for schizoaffective disorder.

 As I was saying in Psychiatrists Assume Medication Noncompliance, Dr. DB wanted to wait be sure my son DS was on the Abilify medication before making a change. I believe he did add Clonazepam at this time. After a few more days and a couple telephone calls from me, he agreed a medication switch was appropriate. He prescribed Zyprexa to be gradually phased in while the Abilify was phased out over a course of five days.

One good thing I have to say about Dr. DB is that he would take my telephone calls. I learned later that his specialty was adolescent and child psychiatry, so he is accustomed to dealing with patients’ parents, I assume. I don’t know how DS ever started seeing him in his early twenties. I think we picked his name out of a telephone book because he was in a psychiatry group close to home, that accepted Medicaid insurance.

Here are some things about DS from my notes from this time. DS insisted he heard a muffled scream from his sister’s room in the early morning and wanted to wake her up to investigate it. He told another sister’s friend to leave the house because it was dangerous here. He was very rude and insistent about it. He said he did not want to take the medicine: it was all in my head that he needs it. When I suggested calling the doctor the next day to discuss it, he took his medicine.

DS told me there was a dumpster at the county recycling facility that was a trap. That’s where he got drugs on the bottom of his shoes, and it’s a good thing the police did not know. He called his grandparents at 7 am to warn them about a researcher. He told me he had a hallucination about a ninja man in his room. (At least he knew it was a hallucination, but it still sounded very scary.) He said his sister had microphones in her ear for listening to him. He thought there were listening devices in his eyeglass frames. He was worried about the police coming in the middle of the night to arrest him because of the illicit drugs at the hospital. He said he felt unsafe and unwelcome at home.

Meanwhile every day all day long he was walking back and forth in the house checking windows and doors to be sure they were locked. If one was unlocked it was usually his own fault because he would make checks outdoors then come back in and forget to lock behind himself. Then he would blame me. He was critical towards me for not doing more cleaning of the house or not keeping the bad guys or pranksters out. He was washing all his bedding and all his clothes every day. (I got so tired of hearing that machine running. I thought for sure he was going to wear it out.) He was washing the inside and outside of his clothes hamper and garbage can frequently. He was cleaning his room, and throwing away alot of things, and filled three large garbage bags. Sometimes I would go through what he had thrown away and save things I thought he might regret tossing when he was feeling better.

One day he left a plastic bag with his Bible and some other things outdoors on the back deck. I did not notice them until after it rained. I managed to salvage the books, but I am still keeping them hidden for him, for when he is less delusional about them being contaminated. I figured he thought they were contaminated because they had been at the hospital with him.  He was scrubbing the bottoms of his shoes frequently with new toothbrushes then throwing the toothbrushes away. We were going through paper towels so fast sometimes I think that was the only thing in the garbage can.  It seemed to be hard to keep shampoo in the house, too.

The day before he entered the hospital, DS hurt his five-year old sister’s wrist when he yanked her blanket away from her. He was upset because she had been dragging it across the floor. I remember sternly warning him to not touch his little brother or sister or I would be calling the police. He said, “go ahead.” His attitude was very bad this whole time. His fear and anxiety were intense and the verbalizations about them constant. The five-year was beginning to believe the things he was saying about bad guys coming in the house. I remember thinking, “Oh, great. Now I am going to get her into therapy, too.”

Someone said to me that he seemed to be very driven. I said, “yes, ‘driven’ is a good word for it.”

I am sad to have brought up all these memories from last summer. Looking at my notes brought it back fresh. We were suffering, and he was suffering. I felt we were totally failed by the hospital, the doctors and society. It seemed to me he needed more frequent therapy and more follow-ups with the doctor. (He only had one hour of therapy and one doctor’s visit in this three week period.) He needed some place to live other than at home. I am glad DS is doing much better now, although I still would not say he is well. When I spoke to him this week, he had no complaints of feeling unsafe.

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.

Psychiatrists Assume Medication Noncompliance

Thursday, December 13th, 2007

memo book kept of mental illness

This post is another one of my Recollections posts where I am trying to catch up the story of my son’s schizoaffective disorder from summer 2007.

After my son, DS, got out of the hospital for the first time (June 2007) it became apparent pretty quickly that in many respects he was just as delusional as he was when he was in the hospital.

From my notes in my little red memo book (pictured), here is a sampling of what I was hearing from him all the time:

He suspects alcohol or drugs in the household water. He knows people who are not in his family are here in the house pulling pranks or putting alchohol in the water. He was washing his sheets everyday because someone is putting something in them, like drugs. He takes his sheets with him when we leave the house to go to therapy. He thinks someone shot a paintball at our window because there is a small speck of dirt there. One time when he took his medicine he said they dissolved instantly in his mouth, and he felt immediately worse. A gang is swapping his pills for poison. He left a note for the family that some cups are “dangerously laced – drink at risk to health and state of mind.” He said someone was playing pranks on him, contaminating the bathroom with some unnamed substance, as he cleaned some surfaces in the bathroom over and over, something he usually never did. (Too bad he never did a thorough job of it.) He announced that he was certain someone has been tampering with his income tax returns in his file drawer, although he had not looked at them yet.

That’s just a small sampling. I will write some more in some later posts.

I was very distressed, and on top of it all, he was often cranky with me and his five-year sister and two-year old brother. Sometimes I would call it downright verbally abusive.

I felt we needed help right away, and we could not wait for the intake appointment with Highland Rivers in Canton, Georgia, that was two weeks after his discharge. I thought I wanted to have DS’s follow-up care with them because the social worker at the hospital said they could offer therapy and possibly other help. We went there for an emergency appointment. When we got in a room with a therapist, after doing some preliminary paperwork, we were told their psychiatrists were too busy. It might take three days for one to get back to us. I did something I hate to do in front of strangers. I cried. The therapist suggested I needed a support group. That made me bristle. The real need here was help for my son.

I called the psychiatrist DS had before he went in the hospital, Dr. DB. He was more willing to help. He first assumed that DS might not be taking his medicine. Since I trusted DS to take his medicine, and he was always very good about taking it before, I did not take charge of it after he got out of the hospital… although I thought of it. This is a word to the wise. When there is a severely mentally ill person in the household, a non-mentally ill person should take charge of the medicine. Dr. DB wanted to wait a few days while we made sure DS was on his medication.

Trouble With Georgia Medicaid

Wednesday, December 12th, 2007

Medicines Abilify and Zyprexa

After DS’s first hospitalization I went through a great deal of trouble to try to get his medication for him. First the drug store we usually used did not have Abilify in stock. Also, they said there was going to be trouble with Medicaid paying for it. Apparently they had some kind of computerized or telephone communication with Medicaid. It took me days to understand what they trouble was. I was still putting the pieces together six weeks later after his second hospitalization (story to come).

I had had enough for the day, when the drug store could not fill the prescription. I went home with every intention of putting it on the top of my list of things to do for the next day. DS was bothered by the issue, and despite my explanation he wanted to make an attempt himself to have it filled at another drug store. He got in his car to drive to it.

I was worried about him driving or even being alone, unsupervised, outside of the house. While he was gone he got a flat tire. I had to get the little ones in the car again and pick him up. What a day.

The next day I tried to deal with the issue of getting his medication. The office of the psychiatrist DS was seeing before going into the hospital said they would not help because it was an issue for the discharging physician at the hospital. That only made a little sense to me because this doctor, whom I will call Dr. DB, had actually recommended Abilify the last time we had seen him, pre-hospital.

Next I called the office of Dr. V, the discharging hospital physician. Even when given some time, the staff person had difficulty discussing anything that the doctor did in the hospital because communication with the hospital was not good and apparently not much better with her employer, the doctor. The staff person said they would call Medicaid and try to find out what was happening. Nothing was resolved that day. I went to the drug store in the evening (a new one that had Abilify in stock) to pick up DS’s dosage for that one day. I was going to pick up his medicine one day at a time because I had also learned that day that it was $20+ per day or per pill to take. We could not afford to pay a whole months worth. I was hoping things could get cleared up in a day or two.

After doing that for a couple days, Dr. V’s office offered us free office samples. I had to drive to Austell, about 45 minutes away, to get them. They gave us a two week supply. Then this particular staff person apparently went on a long vacation, and this doctor’s office became particularly uncommunicative. I do not know if it was apathy, incompetence or a ruthless concern for their bottom line. I seriously considered filing some kind of complaint against this doctor with somebody, but I was too overwhelmed day-to-day with DS and his problems to take any kind of action to find out how to do that.

I tried to deal with Medicaid directly, telephoning them. I learned the objection that Medicaid was raising to the Abilify is they felt a cheaper drug such as Geodon should be tried first. I told them it had been tried in the hospital. I did not know what to do to make something happen. I tried calling the hospital and asking them to talk with Medicaid on my behalf. Finally about six weeks later in dealing with a different medication problem with Medicaid, I learned that as far as Medicaid is concerned, a doctor’s office must file the appeals and paperwork to make them reconsider a case. I could talk until I was blue in the face, and they would not take action.

In the meanwhile, DS’s symptoms were gradually worsening. I was in communication with his first psychiatrist, Dr. DB. Through his office we got more office samples. I still have about $300 worth of office samples in my house that I guess are going to get thrown out when they expire.

There were a great number of things going on at this time, but as far as the issue with Medicaid and Abilify was concerned, it was never resolved. I tried writing a letter to them sending it to two different addresses because I was not sure which one was the right one. I never got a response. I found out about an organization called Rx for Less that would help to pay, but I needed a letter from Medicaid saying they were not going to pay. As it turns out, DS continued to worsen while taking the Abilify and entered the hospital again. There his medication was changed again.

I dread ever having to call Georgia Medicaid about anything.