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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Benefits of Antidepressants in Autism Overstated?

Benefits of Antidepressants in Autism Overstated?.

It’s not often I post something from WebMD. But here it is, ya’ll! Publication bias. Something us ASD families have been talking about for a very long time.

It’s funny because this is a big part of our argument and we get told over and over that it’s simply not true. There is no bias and that if a study is done well, it should be accepted by journal gatekeepers and will find a home in journal. We’re told that the studies we cite were simply poorly done and not up to proper standards.

Yet here it is – they even have a word for it: publication bias.

Having gone the route of SSRIs in our early days, I know this is true. I know that the benefits of antidepressants are severely overstated and the overprescription of such drugs to 3 and 4 year olds is flat out dangerous.

Trust your doctor at your own risk. Healthy living isn’t rocket science. It’s not hard to read the material and learn and decide for yourself if something makes sense to you. There are risks with any medicine and we all take them. We know that some cause liver failure and some cause strokes and so on. But we also know that we take that risk ourselves as adults.

These are our children. They deserve more than lip service. They deserve every parent’s full knowledge of the risks and weighing of the evidence. Decide for yourself if the results are worse than the possible cures.

They turned my son into a psychopath. That was not worth the risk and it took a full 2 months to get him out of that mess and another month to get him back to normal. There is a black box label on these things for a reason.

Is your child so bad off that you need to try? For some, the answer to that question is an emphatic yes. And they’d probably find help there. At least, I hope so.

But for most, the answer is probably no. There are much safer options out there with a better track record.

Whatever you do, DO YOUR RESEARCH.

Do not be a parent that doesn’t have the answers to your own questions. Find them. You don’t need to be a doctor to find out what the pros and cons are of a medication. You don’t need to be a doctor to go to PubMed, to read the research  or even read the insert. Ask questions. Find the answers. Discuss with your doctor, don’t let your doctor simply tell you what to do. Have a real conversation with real questions, real answers and don’t be afraid to tell your doctor no or ask for time to think about it. Understand that doctors are people and they don’t actually know everything. Some doctors prescribe a medication simply because that’s what you’re supposed to do and they really don’t know anything about it. I had one doctor argue with me when I told her I was on oral hydrocortisone simply because she’d never heard of it. She was adamant that no such thing existed. Clearly I’m too stupid to 1.) know my own medication that I’d been taking for a year and 2.) read the damn label.

Don’t be bullied into choices you aren’t ready to make.

BBC News – MMR doctor wins High Court appeal

BBC News – MMR doctor wins High Court appeal.

Chief executive Niall Dickson added: “Today’s ruling does not however reopen the debate about the MMR vaccine and autism.

“As Mr Justice Mitting observed in his judgement, ‘There is now no respectable body of opinion which supports (Dr Wakefield’s) hypothesis, that MMR vaccine and autism/enterocolitis are causally linked’.

Interesting comment considering that by virtue of the ruling just said you’re all a bunch of frakking idiots for revoking his license for something you were never able to prove in the first place.

Good luck with that.

Time to let it go. The poster case against vaccines being ONE possible cause of autism is unraveling pretty damn fast. But it certainly has shown the GMC’s ass to everyone.

Yeah, clearly there’s no agenda here and everyone is just sooooo worried about the dangers of not vaccinating. *rolls eyes* I sincerely hope this makes people wake up and question just what the medical community is trying to hide.

Congratulations, John Walker-Smith. Your career was stained and ruined by a bunch of power-hungry nimrods but at least someone finally listened, even if it did have to be so many years later.

For more information, AoA has some of the details here from JABS.

Allen Frances: DSM 5 Freezes Out Its Stakeholders

Allen Frances: DSM 5 Freezes Out Its Stakeholders.

Is anyone really surprised?

Watch this.

Such a beautiful video from a father.

I don’t know his feelings on biomed. I don’t really care, either. He’s a parent of a child with autism; we’re in the same club.

I feel like his blog is important because there aren’t a lot of places for fathers to go. Men handle this differently with very little support or outlets. If you’re a father looking for a little help outside, maybe this is a good place to start. You could certainly do worse.

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.

 

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