Immune Dysregulation

A Mouse Model for the Immune Dysregulation Subtype of Autism « Lisa Ackerman – Real Help Now.

I can’t really tell you how much I wish this were more well-known. I know that I can’t make anyone else really feel the same way, either. Not in the meaningful way I’d like, at least. I don’t think anyone can feel it properly unless they’ve been there.

The medical community might think it’s not worth exploring but try asking the mom that had a miscarriage two months before getting pregnant with her ASD son. The one whose miscarried pregnancy was completely not right in every way from the very start. The pregnancy that was likely miscarried for some sort of immune dysfunction.

The bad pregnancy that probably affected the pregnancy immediately following it two months later.

Whatever happened to my immune system happened to him. He was born with those immune problems and spent the first three years of his like always sick. Vaccines (especially the Hep B) played such a large role in keeping him sick and making him sicker. Each shot make him slip further away.

I find myself having many of the same issues but I’m older, I’m not developing and learning and becoming a person. I already know how to behave appropriately so when these issues arise in me, I already know how to handle them, or at least control them. I already know it’s not normal.

He was an infant with no prior knowledge. He was a brand new being and all these things were imprinting in his brain as being normal.

And now his immune system is shot and his viral titers are crazy. He will not likely ever be able to stop taking antivirals and antifungals. It’s just an unfortunate reality. His recovery is completely reliant upon them. Without them, his ASD symptoms return. It’s been proven over and over in him. Take antivirals and symptoms disappear. Remove antivirals and symptoms return. We’ve replicated this scenario every year.

I’m not sure how much more proof anyone could need. You don’t even have to believe that he has immune dysfunction. All you need to do is believe that antivirals clearly improve his ASD status. He goes from mostly recovered while on it to not at all recovered when off. We can do this over and over and over and over. There’s obviously some kind of correlation that should give any doctor pause.

And yet I can’t get many western medical professionals to “get it” and understand autism is more than a set of psychological symptoms. We’re fortunate that we’ve got a wonderful ped and a wonderful DAN doctor. But it took us a long time to find a doctor that looked at the results instead of towing the party line.

Medicine should be progressive. We should be open to learning, not pressured by organizations and companies with an agenda.

These are the types of studies we need more doctors to read. We need more doctors that will employ critical thinking skills instead of looking up the same tired answers in a medical book or rehashing the same biased information from what has been proven many times over to be biased journals.

Maternal (possibly even paternal) immune dysregulation should matter. Immune dysregulation as a subtype of ASD should matter.

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Brain cell creation may lead to Alzheimer’s and autism cures

Brain cell creation may lead to Alzheimer’s and autism cures | Science updates | NewJerseyNewsroom.com — Your State. Your News.

I’ve always found this kind of thing fascinating. While I’m not at all impressed with the never-ending quest for genes (c’mon, there have now been over 40 genes identified; how many genes do we need to identify before we wonder if it’s really genes?) This is the best we’ll get out of the whole gene theory–which just brings it all back to being triggered by the environment, I might add. Gasp! Whodathunk it?

Regeneration, on the other hand, that’s another ball of wax altogether and brings out my Whovian fangirl. This is what science is about. This is what medicine should be about. Real research that produces real results. These are the things that bring us closer to understanding at least the one thing we do know about autism – many of those with ASD have structurally different brains.

Get scientists studying the right things. Metabolism, immune system and brains. Get out of the genes because it’s a dead-end.

 

Should we even try to recover our kids?

I know, I promised a post on recovery and what it means but I got sidetracked and offer you this instead, which is sorta-kinda the same thing. But not. I still plan to post one on recovery, though. Pinky promise.

In response to Jim C. Hines’ review of The Speed of Dark, I’m posting this here because what I have to say really isn’t appropriate for his blog comments. I also thought that maybe some of my readers have read the book and might have something to add and would want to go to his blog to comment. I haven’t actually read the book so this is really in response to the question he poses:should we “cure” those with autism? There was a little more to it, and I’m not even going to touch the high vs. low functioning topic today, but that’s the basic question.

As someone that has a son that is mostly recovered from autism, it’s not something that I can understand as being something that changes one’s life to the degree that this kind of moral question asks. The book may be showing a “cure” in a different angle than real life, but in reality, there is already help. Not enough help, but some.

In real life, recovery is not a cure because autism is not a mental disorder that needs curing (something the NDers and biomed parents can all agree upon, but that’s as far as the agreement goes). It’s a bunch of biological inconsistencies and malfunctions that end up creating neurological symptoms. In some people, these symptoms can’t be corrected because the underlying condition can’t be corrected or found. I would venture to add that it’s not for lack of trying. Each child is unique in their issues. There are no two children with autism that present exactly the same way. But with thousands of kids recovering from autism every year, it’s hard to imagine that western medicine is right. A lot of people can be helped, and without the use of antipsychotics or antidepressants.

The real question is: what’s really going on with our kids? Why does the diet work for some and not for others? Why is it that treatments for other chronic illnesses, like CFS or Lyme or any of the other many things biomed parents and practitioners generally discuss, work on our kids, too? Has anyone ever noticed that even some people with depression seem to recover through biomed? Why has no one in traditional western medicine noticed the pattern? Or maybe they have and just refuse to acknowledge or explore it? Okay, so that’s way more than one question. You get my drift.

Not all kids can be treated the same. What works for one doesn’t necessarily work for another. It boils down to this: different biological issues for different children (and adults). But they all produce neurological symptoms.

Is it fair to expect that a child that has nothing but diarrhea doesn’t have something wrong with his/her bowels? They call it “normal” in autism instead of asking why. Prevacid is what you get. This is only one of may examples of what plagues these children. Sensitivity to sound. Why is it that when you treat a child for PANDAS, this sensitivity goes away? The OCD goes away? Why is it that when another child is treated for lyme, that child becomes completely and totally recovered?

Because there are really still very few cases of autism. It’s still as rare as it’s ever been, if it’s ever been at all.

Recovery doesn’t change who a person is. It gives them the chance to live life the way they want. Being able to not live life with an aching stomach doesn’t change the core of a person. It just means their stomach doesn’t hurt. Which in the case of developing children, many times means they can sleep better, eat better and focus better. Which amazingly enough, means they function better. Whoda thunk?

So is the question really about changing the core of a person with autism or is it about healing the medical problems they have? A person who thinks in pictures is still going to think in pictures. Having a healthy body isn’t going to change that. A savant isn’t going to suddenly stop being a savant because their vitamin deficiency was treated and they stopped scripting Thomas the Tank Engine.

My son went from moderate/severe autism to pretty much typical (I always say “pretty much” or “mostly” because he still has raging ADD – we’re working on it) and not once did it change him as a person – except when I gave him antidepressants but that’s another post. He is still the same lovable, caring and funny little boy he always has been. He’s thrived and become so much more. And he’s able to tell me exactly how what few issues he has left bothers him and makes him hate himself and frustrates him. I’m not going to lay down and allow him to grow up hating himself and then deciding he has to accept that this is him and he doesn’t need to change, all the while silently hating every minute of his life – nor will I let someone else convince him of that.

No matter what, he’ll be happy with who he is and I’ll encourage him and love him and teach him to love himself, but that doesn’t mean I won’t strive to help him become who he wants to become.

There’s a reason why autistic adults have a high suicide rate. If it’s hard for neurotypical people to watch and be around, if it’s hard for a mother to watch her son struggle, it’s 100 times harder to be the autistic person. Everyone wants to be happy and comfortable with who they are, including those with ASD.

Now, this whole argument is probably geared more toward the management of symptoms with antipsychotics, antidepressants and the like and I’ve kind of hijacked it for biomed. But that’s what happens when the argument is so vague. Could mean traditional medicine, could mean biomed. I dunno. And maybe those drugs do change a person. Like I said earlier, when I gave my son antidepressants, they definitely changed him. He was, quite literally, psychotic. At best, they are only meant to manage symptoms, and they do a very poor job of it. Still, some people do very well on them. I can’t argue with that.

But the recovery I’m talking about, the recovery us “crazy moms” are talking about, doesn’t change a person. It doesn’t change the way a person thinks or views life.

Wait. I’m wrong. It does change people. It makes them feel normal. Or maybe a better way to say it is not that they feel normal, for what is normal anyway, but that they no longer feel abnormal. It takes away the pain they aren’t supposed to have. Being in pain (physically or emotionally) doesn’t make a person special or unique. It just makes them in pain. To go through life needing to bang your head against a wall long after the bleeding started, is that really something you want to keep?

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