Tuesday, February 3, 2015

He is not OK. Medications.

Like the title says... I really wish that I could pinpoint what triggered or caused this to be happening since Saturday night however I think what it boils down to is the wrong medication(s). For two years now I have read articles and stories about the difference that the right medication(s) and the right dose of medication(s) can make.

Currently my son is only taking one antipsychotic regularly and that is the Invega. He does take Olanzapine sometimes but only when I'm able to 'nicely' suggest it so that he can get a good nights sleep. As I did last night and he said that he took one.

In the past my son was the most stable and recovering while on Clozapine/Clozaril and Risperidone. How many of you add these medications to your computer's dictionary so that you know if you have spelled them right or not? ;) In June 2014 before the Adderall my son was maintaining stability and improving on 150 mg of Clozapine and 1 mg of Risperidone. Over a period of about nine months he had titrated down from 450 mg to 150 mg of Clozapine. Neurontin/Gabapentin and Trazodone was also in there however he never took it regularly. So he was doing really good on two antipsychotics that he took regularly. We added the Adderall for ADHD, lost stability and unfortunately have not gotten back to where he was in June 2014.

As most parents/caregivers know med-compliancy is a big part of the picture. What is important to me is not what is important to my son. If you have been reading my blog then you may be aware that I'm pretty sure my son wanted off the Invega Sustenna (injection) as it killed his libido. And yes it hurt to receive it. I have thought about discussing with his treatment team having the oral Invega upped from 6 mg to 9 mg. I did bring this up to his nurse on Monday however and this is a big however... I am worried about the increase having an affect on his libido and therefor causing him to become non-compliant with his medications.

Like I said. What is important to me isn't important to him. Keeping his libido is more important to him then losing his mental health.

Two tweets that I saw recently that apply here where from Dr. Xavier Amador. One stating that between 50 - 75% of those diagnosed with schizophrenia don't take their medications is prescribed. Another stated that about half don't know that they have schizophrenia. From my own research I know that this is due to anosognosia or lack of insight. It's part of the condition itself that stops the person from recognizing that what they are experiencing is part of the disorder.

I forget exactly what hubby and I were talking about the other night but it was about something my son must have said. I joked with my hubby that my son was telling confabulations because he has anosognosia. My hubby didn't understand me either :) This means that he was saying things that appear to be untrue because he can't see that they aren't true. Schizophrenia causes him to believe in things and see things that most of us don't. How realistic they are have little to do with my perception of reality and more to do with his perception which is being controlled by a disease/disorder that changes how he sees things.

Sorry I'm getting off track... Another concern is weight gain and other side affects from these medications. For awhile my son had to wear a belt with his jeans as they were falling off. I think it was two or three days ago that he commented that he needed new jeans because the ones he had on where getting tight. His eating habits haven't changed. What if increasing his Invega causes him to gain weight and become non-compliant due to this? I know on 450 mg of Clozapine he gained weight then lost it on lower doses.

From a medical standpoint or even that of his treatment team my son is stable and therefore ok. From my point of view, he is not ok. I have seen how well he can do and honestly I don't think I'm ready to accept that what I'm currently seeing or what he is experiencing, is the new normal for him. I know that for some voices etc are a daily part of their lives. I don't know... Maybe after his last break this will be his new normal?

So the question is: What can I do? My son IS being med-compliant. I can't risk interfering with that to any big degree. If we change his medications than we may lose that compliancy. Or worse put him on the wrong medication and lose his current stability. I don't even know what medication could be considered at this point. I do believe he has been on most of them. I do believe that Invega is a good medication for him however it doesn't appear to be enough on its own or at the current dose.

For the moment I will continue to hope that what he is experiencing is a hiccup and not long term. Sunday night he stayed up until after 3 AM and got a little upset with me when I pointed out that how he was talking was delusional. Sometimes, when he is doing good and his mood is stable, I am able to point this out to him without him getting upset. Sunday was not one of those times :) When he started telling me what I was saying (that I wasn't saying) I knew it was pointless and he was too wrapped up in what he was experiencing to listen to me anyways. I didn't push it, left it alone and went to bed.

The reality is that I can't do much about it right now. He is in driver's seat when it comes to his medications. As long as what he is experiencing is not bothering him and it's not, then he will not want to stop it.

He does seem to be a bit better today. I think he was playing a game on his computer and he is now watching stuff. I don't think he has touched his Nvidia gaming system in awhile. I heard him on the phone with his Nana stating that technology is boring and depressing. He can't see that it's symptoms of schizophrenia causing him to not get enjoyment out of these things. Schizophrenia can be depressing. I didn't listen to too much of that conversation as it was fairly delusional and it can be hard for me to stay quiet ;)

He wants to move to... Mexico? and live without technology etc., that it would be great. I did point out that the people living in Mexico without technology and basic necessities may not agree with his point of view. Like I said, hard for me to not say anything. I went for a smoke before I could say anything else. He loves technology... When he is healthy.

His case worker at PACT should be dropping by tomorrow with more Invega. She also contacted disability in British Columbia and got a letter from them for disability here in Ontario. *fingers crossed* this gets us somewhere as I have emailed BC again and now left his worker at disability 3-4 messages with no call back.

My son just asked how he could go about getting some money for an online game. Can he do grunt work with my hubby... It's hard to keep a straight face sometimes. I pointed out that I have seen how much energy he has lately, that he is like 'the walking dead' so I doubt that he has the energy for grunt work ;) He will have money when he has money and he can spend his 'just $28'.

What can I say... Life can be tough sometimes ;)


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