Not Just a River in Egypt

Juicy-FruitOne of the most unfortunate features of autism and an autism diagnosis is the time lost to denial and chasing tails in the beginning. It’s easy to do because an autism diagnosis does not come from blood work; the diagnosis is based upon a conglomeration of symptoms and missed milestones.

Despite the odd promotion in the mainstream press lately of the idea that parents are seeking autism diagnoses because it’s the cool trendy new “thing,” no one really wants an autism diagnosis. Most parents will recognize at some level that their kid isn’t hitting milestones, is not progressing, or is even regressing, but few people want to talk about it. So the issues tend to be very obvious by the time parents bring their concerns to a doctor.  Often it is easy for the doctor to  brush those concerns off, saying that its nothing.  Lots of people get the “He’s a boy, and boys develop later” party line.

I remember finding the Age of Autism website a good year before my son regressed. I spent a lot of time over at and was well versed in the concept of vaccine damage.  In hindsight, I had a little bit of precognition going on. If only I had listened to my gut. We waited until our son was two before starting shots, then did one at a time. I breastfed for 35 months. We did everything “right.” So when he got sick shortly after his third birthday and subsequently regressed, I was entirely in denial that it could be autism. After all, the autism regression was supposed to be before age three.

The pediatrician sent us for occupational therapy and speech therapy. When that had no real results, we did a sedated autditory brainstem response (ABR) hearing test and MRI. Neither of those told us anything. I insisted on a neurologist appointment, and the pediatrician sent us off for a 20-minute EEG and got us into see the neurologist about 10 months after Dominic regressed. The neurologist gave us a diagnosis of  autistic regression syndrome. We left that appointment and went home devastated. At that time, neither my husband nor I had any idea how much of a true marathon we were facing. It took a couple of months to wrap our heads around the idea and get started healing. I was really resistant to changing his diet to gluten, dairy, and soy-free, and in hindsight that makes me laugh because, of all the things we’ve done, changing his diet turned out to be the easiest and cheapest. Seven years and over a quarter of a million dollars out of pocket later – we are still working!

I can’t even go out in public these days without handing out my calling card, which has my own blog, TMR, and IonCleanse by AMD links.  Kids with rosy red cheeks, eczema, toe walking, obviously stimming . . . I give their parents my card.  Most aren’t quite ready to understand what the red flags may mean.  What makes me sadder are the parents with older kids who have clear issues (the loose floppy joints, difficulty with balance and motor skills, obvious social interaction delay) and absolutely refuse to consider things that might help their kids.  Maybe it’s because if they do something that might help, that means they are admitting that there is an issue.  It makes me pull my hair out in frustration.

Imagine how much time I could have saved if, the appointment after the flu that caused my son’s regression, the pediatrician had said to me “you are starting a regression and this is what you should do to stop it,” and handed me a packet of resources that included detoxifying, changing his diet to get toxic stuff out, and links to TMR, Age of Autism, TACA, Generation Rescue, etc.

Imagine every diagnosis coming with a flow chart of the methylation cycle and detox cycles and a list of options for places to start.

Citric_acid_cycle_noiEven better, imagine if every baby had a DNA swab at birth to checking for genetic mutations that affect the ability to detoxify or methylate.   Imagine that, in the hospital, parents were told “Your child is not a candidate for vaccination and is medically exempt from all of them because his or her genetic structure shows he or she could be damaged by them,” and provided with a medical exemption then and there.

None of those is likely to happen unless we change our culture significantly.  That means we, as Thinking Parents and members of this global village, have an obligation to let other parents know about the red flags when we notice them. It can be difficult, and you will have to tread lightly or you can send someone further into denial. But maybe, just maybe, if enough caring people raise concerns, a lot of parents and children can save a lot of time that would otherwise be lost in denial.

Please keep TMR’s red flag blog series in mind and when you see children who have several, share the articles.   If we could get parents of newly diagnosed children to skip the year of tail chasing and denial, odds are good their children will be healthier for it and may have a much easier time with recovery.

~ JuicyFruit

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8 Responses to Not Just a River in Egypt

  1. Stephenie says:

    You reference older kids who have loose floppy joints, difficulty with balance and motor skills, obvious social interaction delay… I am the parent of one of those kids. We’ve been doing biomed since he was 4 (supplements, chelation, gluten-casein-soy-corn-egg-sugar-peanut free diet, biofilm protocol, etc. for 15 years now). My son has diagnosed mito issues (muscle biopsy) and a progressive motor neuropathy in his feet and hands that causes problems with mobility, handwriting, etc. Biomed has been enormously helpful, but I am always searching for ways to help him further. My question is: In your opinion, is there an intervention/therapy/treatment that is most often helpful in addressing the issues with motor skills? Just want to be sure I haven’t missed anything……

    • ProfessorTMR says:

      Stephenie, have you heard of reflex integration? Svetlana Masgutova does a therapy that is designed to restore integrity to reflex neural circuits. According to her, the reason your son experiences these symptoms is because certain reflexes did not develop at the right time as a child (or were since damaged by some form of trauma) and her therapy takes people back to the development stages of reflexes. it’s gentle and non-invasive, but pricey. Google MNRI.

  2. NNF says:

    What is the best way to have your child tested for MTHFR defect? Also, if mom(me) has one, is child more likely to inherit.
    Also kudos to TMR, I’ve been a follower for 3 years now. You have educated me so much. My oldest son has ADHD and my middle son has possible. Both vaccinated on schedule:(

    • ProfessorTMR says:

      Hi, NNF! Thanks for the compliment. The easiest way here in the States is to go to the 23andme website and order their test kit for $99. It’s simple if your kid can spit. Then there are a number of places online that can help you interpret it. And, yes, children frequently inherit MTHFR mutations from their parents.

      • NNF says:

        Thank you! I definitely want to try that on all three of my children. I saw that before but was wondering if it was legit or not. Thanks again for all your dedication to these topics, I’m going to check out your other blogs.

  3. Donna Powers says:

    Weird…I remember as a parent in the 1980’s in the era of ADD/ADHD when the suggestion was that we were looking for the diagnosis…that having ADD/ADHD somehow made us/our kids ‘special’. Really? We wanted that for our kids? We want our kids to have problems with school and attention and we want to put them on drugs?? And now media is suggesting parents think autism is a cool trendy thing? Yikes! Thank you for bringing awareness with the Red Flag series!

    • NNF says:

      That’s insane that people are saying trendy. Dealing with any type mental disability with your child is heartbreaking. I can assure that no parent would ever want to drug their child as well as all the other issues that go along with ADHD. I can’t even imagine autism. Drives me crazy when people say ADHD comes from lack of discipline. I watched my son have high fevers for a year every 4 weeks like clockwork. I never can know for sure that that didn’t affect his brain. Just sad because you lose trust in your Dr. I now know this was probably his system trying to detox the vaccines and chronic antibiotics. Sorry to rant just upsetting. glad to know I’m not alone though.

  4. Erin says:

    And don’t forget, peditricians need more training. I am so sick and tired of hearing that doctors are always right. I am sick of the Kristin Bells of the world saying we need to listen and trust our doctors. REALLY BECAUSE WE DID! If our peditrician had known what the hell we could have started a lot sooner. I think our medical doctors need to know about Autism in a very real way, we got our diagnosis after 6 months worth of psychological visits at age 2 and then we got PDD-NOS because our child doesn’t display so many “typical autism symptoms” …but he still doesn’t talk…STILL at age freakin 5 next month. Sorry I think I am on a tangent this morning…vent over!

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