The one milestone I had hoped to never reach

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  • Post last modified:July 31, 2013

Gavin is officially maxed out on Clozapine. This is one milestone I had hoped to never reach. I’m greatly concerned about this because we have nowhere left to go, as every other antipsychotic medication has failed to work. 

It would have been extremely naive of me to think that this wouldn’t someday come to pass. 

My fear is that we will not be able to manage his schizophrenia and that is not a good thing.  This isn’t even in the same universe as a good thing. 

If his hallucinations aren’t managed, he’s not able to tell the difference between what’s real and what isn’t.  Historically, when he’s unmedicated things get really, really bad. The things that he sees and hears become very, very dark. 

He becomes very violent as well. There aren’t many things that scare me.  This is one of those things. 

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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lostandtired

rmagliozzi AMDuser thanks for the info and the support.  I will check into Deplin.  I had never heard of that before but at this point, all options are in the table.  😉

rmagliozzi

lostandtired rmagliozzi AMDuser 
Lost and tired, there are a few of these prescription only medical foods like this. Another one you might want to look at is Cerefolin, which has the l-methylfolate, methy B12 (which is need for methylfolate to absorb properly and also for detox and immune support) and NAC (n-acetyl-cysteine), an amino acid which builds glutathione in the body (helps fight disease and oxidative stress). It is being pushed right now for adults and those with mild cognitive dysfunction. I personally give my autistic son all these 3 vitamins separately, and I can tell you they really make a big difference. He  has gained weight (other child is the too small one) is sharper and more there, acts more normal, happier overall. NAC lowers cytokines and inflammatory compounds in the brain. Its also helpful for asthma. Glutathione, which is what it increases, also helps fight PANDAS and illness and is very good for neurodegenerative diseases.

rmagliozzi

http://depression.emedtv.com/deplin/deplin-uses-p2.html
This page has info on Deplin use in schizophrenia.
So here is the info on how to figure out if your son has suboptimal levels of folate. either they are extremely low because the body absorbs none at all, or they are high or way too high because the folate is not going into the cells where it can be converted and used by the body. It is just floating around in the blood, not being used. The same can happen with B12. Both of these things are very common in autism. My kids don’t absorb folate or B12 right so they were put on Deplin.

rmagliozzi

That was how our neurologist and our naturopath explained it to me.

rmagliozzi

She has most of her PANDAS patients (the neurologist on Deplin), and all the autistic ones with PANDAS take Deplin and methylB12.

rmagliozzi

omg. that’s not good. Have you researched Deplin? It is sometimes used in Schizophrenia, and is a medical food consisting of L-methylfolate. It is also prescribed for some people who have depression and medicine is not enough to stop their symptoms. It might be worth looking into. I have also read that calcium channel blockers are being looked at for use in schizophrenia and can work well to stop the symptoms. I have no idea if those meds are still in clinical trials or if they are out on the market for that use yet.

AMDuser

I wish that there was a cure or something better for schizophrenia because I know some of those meds can be dangerous. I wish there would be more research with schizophrenia with to days tech and even with distributed computing more research on the computer could be done faster with help from like the Folding@Home project at standford.