Our medication journey has been really rough. My lo had a rare reaction to Zyprexa called Neuroleptic malignant syndrome with a swollen throat, neck, lymph nodes and glands. Her neck was tilted back and stiff. She also had jerking and spasms, a rash, high blood pressure and a fever. In addition she had a gurgling in her throat that had to be suctioned often. I've spent every day at the hospital. Each day she seems to get better as the medication gets out of her system. However, today they brought in some medication and I asked what it was and they said it was for her Parkinsons. I told them she doesn't have Parkinsons, she had a medication reaction and to stop giving her that medication. Her throat is hardly swollen, her neck is straighter, the rash is lighter and tonight the gurgle was barely there. She was talking and I could understand a lot of it. But, she hasn't eaten since Wednesday and they want to put in a nasogastric tube. Does anyone have any thoughts or experiences? I don't want it and I told them I want a swallow evaluation tomorrow and then I will decide. When I left today I had them write - NO MEDICATIONS except Ativan without my permission. She started her old Alzheimer's agitation and her verbal repetition late in the day so I know she's getting better. "Take me down" repeated over and over was music to my ears. Then I want her back to the Center to find a medication that works.
diatron glad to hear shes getting back to her old AD self. in this case, its a good sign. i would also not let them give her any meds. she needs some time to clear out before starting over. wow. that was some reaction. goes to show everyone has to be monitored, some tolerate them some dont. hope you rest easier. i dont know about the gastrotube. like you it can bring on a whole miriad of issues. its not comfortable and she may get even more aggitated then shed need more meds. . can you try to get a bit of soft foods into her over the day? like yogurt, pudding, applesauce, etc? as long as they are giving her iv fluids, i think that the critical part. i think i'd try to feed her little bits and see if she can tolerate something light before i'd opt for a tube. but thats me. divvi
They wouldn't let me give her applesauce tonight which is why I asked for a "swallow" test (which I've heard of somewhere) and then I will decide. I thought that would give me at least an extra day to get them to try some food.
maybe pudding or something with thickener in it then. applesauce if thin may cause choking and aspiration. yes swallow test may work to your benefit. i read somewhere that they have to insert the tube with light anesthesia. i dont know if you would want that only if she was in a life line situation. but like i say this is my input only. be sure and ask what meds she would need if you decide to go that route.
Diatron that was indeed a rare and dangerous reaction to a med. Now-about the NG tube-just my thoughts- If with medication a quality of life can be established but your wife is unable to swallow- a tube can be placed on a temporary basis. This is not an issue set in stone and you can always change your mind. N/G tubes are not comfortable but there are alternatives. A G-tube can be placed directly into your wife's stomach-a very simple bed side procedure. It can be very easily removed or changed. It might give you time to decide what you want to do.
When Lloyd had his first seizure and was in ICU he went for days without food. Same thing. He had to pass the swallow test before he could be given anything. The woman who came in for the swallow test didn't really spend more than 3 minutes trying. When she decided it was unsuccessful she scraped it all out of his mouth. Serious deficit of bedside manners. Of course, he was still coming out from under all the drugs they had given him in the ER in an attempt to get him under their control. I would try to avoid sedatives and anesthesia. My son adopted a baby with a cleft palate and his wife was afraid to give him any baby food. I started him by putting food on the bottom of the spoon and wiping it on his tongue. It was very little food and he could immediately taste it. Maybe that would work for her.
Diatron--as an FYI--when Steve had the dystonia reaction to Zyprexa, Lakeside dialed down the dosage and added a Parkinson's med called Amantadine. It's for agitation and it also helps the dystonia. (They also gave him Cogentin for the dystonia.) He remains on all 3 today and is fine. I realize your wife had a different side effect, but I figured it would be good for you to have this info.
I am so glad they have some answers for you and that she is improving, fantastic!! The G tube is what we were going to do. I wouldn't have left it in, but if needed to give a temp boost I would have. Still to this day glad it didn't come to that point. My heart goes out to you and your DW
Diatron--Jeff is currently at Lakeside. He had a rather pronounced dystonic reaction to Zyprexa and they stopped using it, then upped his Seroquel. That isn't being so wonderful either as he became completely non-functional, unable to feed himself, and apt to fall asleep on his feet and fall down. So that's been dialed down and he was slightly better today. My biggest complaint about the unit is how difficult it is for me to get an update from either the psychiatrist or N.P. on his case. There are a couple of nurses who have been helpful, but I ONLY saw the psychiatrist (Dr. Joo) once, and that was the day he got there. Pretty frustrating, especially since tomorrow will be 3 weeks. I'm ready to raise a stink tomorrow. The nurse left a message for the N.P. today, that I wanted an update, but she did not call me back. I presume that whom your clinician is makes a difference in this area.
Diatron. I know nothing of the specifics of your wife's status age etc. I think you will find this link possibly of interest. It states that Lilly has admitted selling the drug as suitable for elderly dementia patients knowing it was worthless, provide no help and as you discovered expose the patient to life threading side effects http://www.bloomberg.com/apps/news?pid=newsarchive&sid=aTLcF3zT1Pdo
emily I used to deal with a medical office that was notorious for poor or lack of communication. I told them the next time that happened I would bring a blanket and cooler to the office and camp out on the floor in front of their patients and gladly explain to all who would listen what I was doing. Not a 100% improvement-but definitely better.
Bluedaze I'm operating on assumptions of age and condition but Zyprexa hasn't been the drug of choice for some time now given there are so many alternatives.
Harvard Medical School Family Health Bullitin "February 20, 2004 -- Eli Lilly is reported to have voluntarily informed doctors that its antipsychotic medication Zyprexa (olanzapine) may increase the likelihood of strokes and deaths in elderly patients." Despite this news, some doctors continue to defend the use of Zyprexa for elderly patients. They believe the benefits the drug may bring in helping patients with dementia live at home longer and lead somewhat more normal lives outweighs the risks.
I'd sure want to try a drug or two in the same class that doesn't have all these dire warnings
I think it must just be one of those highly individualistic things, where the drug is helpful in enough cases that it's worth a try. Unfortunately, I don't think there ARE countless alternative pharmaceutical possibilities for when we start encountering behavioral problems.
2004 is a long time ago. Several years ago I started a thread here about those dire black box warnings. Jeff is not elderly-so those warnings are not quite as dire. When you are dealing with an impossible situation you sometimes have to chose the lesser of the evils. Em-I know it's hard, and you have had a sudden spiralling down of your husband and nothing seems to be working.Time for a temper tantrum in the doc's office and demand some answers. What we need is for folks on this site who care deeply about you to march with you for a grand intervention. Doctors are not G-Ds.
Emily--Sorry to hear that things are not falling into place yet. Based on our experience with Lakeside, I'd recommend asking for Dr. Joo's email address, pager #, anything that will put you in direct contact with him/her. Failing that, I'd get the social workers involved and demand better lines of communication. Last year, there was always a NP on duty, and she was a good source of information. Steve's former doctor was in charge of the unit, I'd be happy to email him if you think it may help. You are entitled to frequent status updates, period.
Thanks Marilyn--Dr. Joo is a she, and the email address is a good idea. I did get to speak to the N.P. yesterday, and one of the medication docs. (who seem to have a function which is distinct from the psychiatrist...guess it's a team thing.) So I am feeling a little more informed, but still will pursue the direct contact with Dr. Joo.
He was SO dopey and wiped out on the higher dose of Seroquel, that as he's started to improve over the past several days I thought they'd dialed back on it, and I wondered what would take its place. What actually has happened, according to the N.P., is that he is processing it better after a few days, so he remains on 200mg/day Seroquel and his Zoloft has been upped to 75mg, while the Namenda is being phased out.
He has not had an eruption of crazy/destructive for 9 days now, which is a positive, especially since he seems to be tolerating the regimen better. Actually, today when I got there he seemed so bright and chipper that it took me by surprise, but it only took a little bit of hall-walking, bathroom visiting, and lunch eating to realize there are plenty of reasons why we need care help. I posted a Facebook pic of Jeff shaving himself (electric, of course) which is an improvement in that he can do it at all (once I turn it on and put it in his hand.) He still isn't managing to feed himself very effectively, but I don't know if that will ever improve. It's too visuospatial and that function is just failing.
So, I'd say things look hopeful. But I will never stop living in fear of breakthrough paranoid crazies.
I know Lori, I have been wondering how he and his wife are fairing. There have been times when I just couldn't post here, I am hoping that's "all" it is with Diatron.....
Emily, 9 days must seem like a lifetime at this point. Glad to hear Jeff is doing somewhat better now, it must be such a huge relief for you! I haven't been on FB in a few days, will have to check out your latest picture :)
Emily--it seemed to me that at Lakeside, the neuro was "driving the bus" in terms of meds. The doctor on the unit was present there more hours, but not making the decisions on adjusting meds. She knew what was going on with Steve and I would run into her from time to time, but I stayed in touch with the neuro.
I think you'll find that once Jeff is stabilized, your fear of paranoid crazies will abate (it will take some time). That's what happened to me--yes, there's something in the back of my mind always waiting for the other shoe to drop, but it's stays in the background. You need more distance from the paranoid/acting out events, I think, for that to happen.