Thursday, May 14, 2015

Bye bye Latuda

I was really hoping or had high hopes for the Latuda as I have heard of good results with it. However the small positives that I have seen are in no way outweighing the negatives. Honestly I'm not sure that the small positives I have seen are even as a result of the Latuda. The only positives I have been seeing is my son sometimes picking up after himself and making himself things to eat which most likely can be attributed to years of me trying to install this habit in him.

My hubby took my son out with him to clean the car on Saturday and they came back with these for Mother's Day:

My son came downstairs where I was doing laundry and gave them to me saying: I thought these would do you. Meaning he picked them out and thought I would like them. He was right!

As I mentioned on Friday he went to the liquor store. I don't think he drank everything on Friday although I can't say when he finished it. One day earlier in the week he threw out the empty bottles. This time he  managed to hide them so that they weren't obvious.

After I cut the Latuda from 80 mg to 40 mg it was still several days before he actually took it and kept it down. He has been vomiting off and on. I wasn't sure if it was the Latuda causing this or not but I'm pretty sure that it is. Although part of it could also be how much he is smoking.

On Monday his new nurse visited. He seems nice... Sometimes my husband will comment that we need someone with more experience. I tend to agree ;) I don't know if it's that I'm so involved in researching medications or watching for signs, however I find that most of his treatment team just don't seem to get it. Maybe I think that I know more then I do. I know what I'm seeing and I know what my gut is telling me and I'm listening.

First I got the run down on cutting pills in half... Hmm... Ok way beyond that. I did my research first. I think I may have gotten chastised for cutting the dose as "How is the doctor going to know if the medication is working as prescribed?" The dose as prescribed was landing my son in an hallucinating state that could have had him suicidal if I hadn't intervened. So thanks for the input but my son is my priority not the doctor.

My son was looking at his nurse, not listening to him, and smiling to the point of almost laughing. His nurse was glad to see him happy... I found that a bit ludicrous, no pun intended. He's not 'happy', he's experiencing symptoms. My son continues to deny voices and hallucinations if asked outright if he is experiencing them. It's obvious that he is. Something I have difficulty pinpointing is the difference between intrusive thoughts and voices. Personally I think that are pretty close to each other with voices perhaps being one step above intrusive thoughts. Intrusive thoughts implies that they are intruding or not wanted however if one is welcoming them then one wouldn't consider them intrusive. Still they are not, for lack of a better description, our own thoughts. So I asked about the difference. His nurse explained to me the difference between thoughts and voices. I guess he missed the word 'intrusive'.

Monday and Tuesday he managed to keep down the 40 mg doses of Latuda. Yesterday (Wednesday) he vomited twice. Once all over the bathroom. That was fun to clean up ;). Since Friday he has started with hand movements, like he is flicking something. It has been progressively getting worse. Now he is doing it almost all the time about once every minute or less. If I hold the hand that is doing it, he starts with the other hand. He says that it isn't bothering him however it IS bothering me because I know it shouldn't be happening. The last 2-3 days he has become very needy in wanting me to cuddle with him. Wanting to sit almost on me on the sofa. Wanting me to file his nails and rub and scratch his back. I'm doing my best to accommodate this change and spend more time with him. Last night he wanted to sleep in my bed. Sadly this is something I'm not comfortable with however I did hold him for awhile in his bed.

Yesterday morning I talked to his case worker. She has been with us since, I think, July of last year. Possibly before that. One thing that I truly appreciate about her is that she listens to me. She doesn't cut me off mid-sentence when I'm telling her about what I'm seeing (his new nurse does as have others). In fact she has commented what a good thing it is that my son has me. She doesn't question the decisions that I make when it comes to medications. Like I said, she listens. So she knows that I make the decisions that I do with some knowledge of what I'm doing. At least that is how I'm reading it ;). I feel reasonably confident that what I tell her gets relayed to the psychiatrist with the appropriate emphasis on the concerning things that I see. With all the others... not so much. Even if she doesn't agree with what I'm doing she doesn't chastise me for it, instead brings it to the attention of his psychiatrist.

Yesterday his case worker and I agreed that my son is regressing. That what I'm seeing is not right for my son. I could tell that his hallucinating is getting worse again. He is lost. Goes the cupboard and doesn't seem to know what he is there for. I could tell by how he is walking that he is mentally lost. Some of his behavior has been almost child-like. After he vomited yesterday evening I told my hubby that Dr. Barb is saying no more Latuda. ;) I've tried to give it a chance however enough is enough.

This morning I called PACT and left a voice message as I know they are having their team meeting today with the psychiatrist and I wanted them to be aware of what I was doing. Last night I gave my son 10 mg of Olanzapine. He seems quite willing to go back on it. Yup, conundrum that he is! He was put on the Latuda because he decided to come off the Olanzapine. *sigh* I gave it to him around 8:30 last night. Put him to bed shortly after, spending time with him cuddling. Found out that there was a war going on his head... When I checked on him around 10, he was sleeping and snoring! As if that was a sound I ever thought I would be happy to hear and I was! I don't think he has had a sound sleep for over two weeks now.

I haven't been in the backyard for the past couple of days as it's been a bit chilly. I went out there this morning as when I looked out there I saw a pile of cigarette butts on the patio table. There is an ashtray on the other side of the table. I guess it was too far away and my son has been butting out his cigarettes on the table. There was butts everywhere. Some of them I could tell hadn't even been put out but went out on there own. It's a good thing there is no smoking in most of the house or there is a distinct possibility we could have been dealing with a house fire. I cleaned them up.

His nurse called me back after receiving my message this morning. I sat there silently fuming as he chastised me for making medication decisions without the psychiatrists ok. Finally I got blunt with him and told him that I'm going to do what I think is best for my son. I know what he has been prescribed and why. Keeping him on medications that are not working and making him worse, regardless of the doctor's orders is not going to happen. He kept cutting me off when I tried to explain what I have been seeing. Basically we ended the call with me saying that my son's psychiatrist should have enough understanding of me by now to know that I'm going to do what I think is best. If history is any indication he has yet to go against any of my decisions and I seriously doubt that he will this time either. The goal is to keep my son out of the hospital not put him there.

I think I need to do some research on medications. I think we need one that only affects dopamine and not serotonin as well, as most of them do. For me the only question right now is what dose of Olanzapine. Previously he was taking 20 mg a day which is supposed to be maximum dose and I would rather not go back to that if we don't have to.

Today he seems a bit better. The hand thing is still going strong. I'm guessing that will take time to go away however if I don't see an improvement in it within the next day or so I will be addressing it further.

We had our follow up appointment with ADAPT on Monday. It's at the mall which is like a 10 minute walk. My son will not be continuing with them. Voluntary and all that crap and he doesn't think that drinking 400 ml of 40% alcohol is a problem. So there you have it. I'm going to continue with them. I need the support and help learning to better cope with being the parent of an addict with mental illness. I have already booked an appointment for next month and registered with some sessions on the 25th and 26th. They also offer support and funding for quitting smoking so I'm going to get hubby and I registered so that hopefully they can provide us with free patches!

I did start the process of registering with a company for work from home opportunities. Been meaning to finish that for the past couple of days.

I wrote a piece for a book that I'm going to be participating in. It's currently pinned to the top of my Facebook page if any of my readers who are parents or caregivers are interested in telling their story and helping to support the non-profit that is putting it together. You can find my Facebook link on the side of this blog or by clicking above.

May 17-23 is Schizophrenia Awareness Week. I had grand intentions of creating a whole lot of literature and informational pieces to highlight on my Facebook page and the event that I created. I still have today and tomorrow...

PS: He has been continuing to take his Invega!


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