Heartbreak: A conversation with my schizophrenic child

Gavin suffers from a disorder known as . This is kind of a blend between and schizophrenia. We see way more schizophrenic symptoms than we do bipolar anymore. has been in a state of psychosis for many months now and shows no signs of pulling out of it.

textgram-2The other night, Gavin and I were playing Minecraft together on the Xbox, as we do on most nights before he goes to bed. It’s something he really enjoys and I can use the game to help teach him things that are harder to teach in real life. It’s just become one of our things. 

While we were playing the other night, Gavin decided to share what had happened back at base.

When I say back at base, it refers to the other side of the portal that Gavin travels through to get to spend time with his friends. If that sounds like a lot to digest, don’t feel bad because I barely follow it myself.

Below is the conversation we had the other night. It gets a little weird and Gavin is very difficult to understand but by clicking play, you will be able to hear the conversation we had. This is safe for work and little ears. You can hear Minecraft in the background, as well as the other boys fighting upstairs.

This will help to provide you with some insight into raising a child with schizophrenia… You may also better understand why this is so exhausting for me as a parent. Keep in mind that he’s constantly talking to and I about this stuff. It gets pretty overwhelming.

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  • I’m happy to answer any serious questions pertaining to this topic… ☺

  • Kayden

    could you potentially transcribe the audio for those of us with auditory processing difficulties?

    • I hadn’t thought about that but if I have the time, I’ll try to do that… ☺

  • I listened to this. I know how it feels to sit on your side of the conversation, though not to that degree. I have had those nights, trying to ask the right questions to understand, feeling lost. Loving your child. First, I want to say, your son must be brilliant and you are such a loving father.

    Next I want to ask, has anyone ever asked you about trying antibiotics for him? I tweeted this article just minutes ago: http://blog.brainhq.com/2015/02/10/researchers-testing-antibiotics-to-treat-schizophrenia-symptoms/ because I was wondering if you’d ever heard of it.

    I don’t usually like to poke my head into another parents journey, but my heart was so with you and your son when I listened to your conversation. My question and link may be a rabbit trail. I’ve been down those before with my daughter, I know how it feels. But a few of the trails we’ve gone down have been helpful, so I’m willing to take the trails one at a time, at least once, when we have the strength. In between that, we enjoy what we have.

    Just a scanty background, in 2013 a doctor suggested she might have schizophrenia (I could well understand that based on her symptoms at the time). However, because of being to some doctors who saw this link between infection and schizophrenia, she no longer has the markers that she did back then.

    I’m not saying this could be a total, wonderful, cure. I’m saying I think exploring this may hold promise to bring some symptoms down a notch.

    You are doing a wonderful job as your son’s father. If this is too much, or you’ve thought of this, or your just not in the mood to hear this, I understand. I’ve been there, I’ll probably be there again some time. I have high regard for you and your whole .

    Jenette

    • Jenette,

      Thank you so much for reaching out. This is such a really tough situation and so few people understand first hand..

      I should clarify a couple things based in your questions. ☺

      We know there is no infection because has a severely compromised immune system. He’s on IVIG twice a week and is monitored for infections..

      Does that make sense?

      • Yes, it does. I can tell that you’ve been through the wringer and have most likely explored things I haven’t even thought about. Thanks for sharing so some people can try to get a glimpse and others of us can feel not so alone.

        • The most moving aspect is how you enter into his world. You let him talk about those experiences and sort through them. You continue to be connected to him by letting him talk to you about his journey. It’s hard for me to put into words. But you doing this, keeps him from being isolated, keeps him a part of you and the whole . That is beyond words to me.

      • Mark Benton

        I’ve hardly read any of your posts or blog. But just some potential leads here….. The theory of the brain being affected by antibiotics stems from a variety of possible mechanisms, such as 1) the chemical’s antibiotic action 2) the action of that chemical in another way, e.g. directly on the person’s neurology, chemically or physically, such as the ‘antibiotic’s’ anti-inflammatory effect as described.

        The antibiotic effect can play on this mechanism: http://www.theatlantic.com/health/archive/2015/06/gut-bacteria-on-the-brain/395918/

        which can be researched under ‘hygiene hypothesis’ and ‘Phylosymbiosis’

        The chemicals released by the microbes we co-exist with have great, and poorly understood effects on our immune, hormonal and psychological state.

        An antibiotic can for example kill off yr gut bacteria and then you replenish the bacteria with good ones from yogurt and nuts.

        There are studies on cesarean born children suffering because they were not seeded with good bacteria from their mother during birth.

        Another pointer for research is that monkeys caught from the wild ‘go mad’ in zoo captivity because of their gut bacteria changes from the wild state, to a state like ours because of the conditions and the food we feed them.

        https://www.google.co.uk/#q=monkey+gut+bacteria+captivity

        I think someone is piloting a study to see if seeding their food with wild monkey bacteria helps them to be more healthy.

        This frame of thought can help you rationalize and contextify your thoughts as you think about the complex cause-effect spectrum at work with us all:

        “Western medicine has traditionally operated by separating us from the traditional knowledge so that they can charge us for the privilege of getting the medicines from the Pharma Corps”

        Obviously don’t do anything without medical consultation, but I hope some of the above, that I have typed in quickly, may help you in some way.

        Best wishes to all of you on here

        I will read more of your blog in future 🙂

        PS

        The latest on Radio 4 in the UK addressed today how the NHS is struggling to get a handle on the developing Mental Health epidemic in Britain

        I am thinking how this is contributed to by the the totally off-scale technological environment children now grow up in, combined with the fast, low nutrient, high calorie food, pollution and pesticides which are directly toxic, and indirectly, killing off all the microbes we still know nothing about…..

  • Zoe

    Does play a lot of Sonic games, or are these things leftover memories from when he used to play Sonic games? I’m just wondering if he does still play, if maybe phasing them out would help or if he would just manifest a new world from say minecraft or something new

  • Adam

    Ever thought of trying to find a comic book artist to sit down and draw out his missions. Maybe making a series of it.
    It sounds like an interesting mix of sci-fi and comic genres.
    Just a thought from another ASD/Bipolar parent…