Your daughter, Rachel, is beautiful. I can completely understand why you adore her and write about her. I also have a daughter with an autism diagnosis that I adore. Megan was born in 1993, similar to Rachel, but her trajectory into autism seems much different. In 1995, Megan was diagnosed with autism but her immune system was a big part of it. Unfortunately, we had no idea at that time as her behaviors and the label “autism,” prevented further medical investigations. To this day, it is excruciatingly difficult to find doctors who will investigate kids and adults for immune issues if they are on the lower end of the spectrum, and the word, “AUTISM”, is seen on the paperwork.
Meg broke out in a full body rash after her MMR vaccine. She also was given a DPT vaccine at the same time. She lost her words. She could not eat food without suffering constipation and diarrhea. She had crazy nosebleeds. She had undigested food in her stool and we found out that she was intolerant to gluten and casein. She had severe and long-lasting infections in her gut, like Giardia and Blastocystis Hominis, as well as Candida infections which continue to try and make my daughter, their home . She had chronic ear infections. She began to have behaviors, like biting herself and others. She had tics, then OCD emerged. Seizures developed in her early teens. Aggression and psychotic-like behavior dramatically entered in her late teens. Labs were finally done that showed high antinuclear antibodies, high GAD antibodies, and high STREP antibodies. Her MMR titers continued to be 4-5 times higher than “normal” levels. Her T cells and B cells were skewed. PANDAS and PANS appeared on our radar. Her IgG levels were consistently and drastically low. Researchers are actually making connections with PANDAS/PANS and the microbiome, and also showing that the severity of autism reflects how dysfunctional the gut bacteria is . These children and adults can be helped by immune treatments.
This case sounds very much like Megan, though her viral trigger was the Measles, Mumps and Rubella vaccination. “Pediatric acute-onset neuropsychiatric syndrome (PANS) misdiagnosed as autism spectrum disorder”! This must be purchased but a brief summary is that this was a child who was 14 months old, and had a viral infection, also ear infections and other symptoms. About three weeks later, he developed behavioral issues and then tics with other symptoms resembling asd. Within less than two years, he was to be diagnosed with severe autism. I can’t say more other than he was treated with IVIG at age six, and later, subsequent treatments with his symptoms then resolving.
The autism journey for us and thousands like us, became a life of survival.
The one good thing about an epidemic increase in a disease is that there is more attention to it. Looking at just Amazon and your book, Vaccines Did Not Cause Rachel's Autism: My Journey as a Vaccine Scientist, Pediatrician, and Autism Dad , there are 17 reviews. That may be a reflection on the “Vaccines Did Not Cause” piece. The book by JB Handley, How To End The Autism Epidemic, with its focus on vaccinations https://www.amazon.com/How-Autism-Epidemic-J-B-Handley/dp/1603588248 , seems to show that common denominator. A huge response --- 374 grateful (and still growing) customer reviews -- pediatricians, researchers, and especially parents, expressing their pain, their anger, and frustration on the denial that vaccination can cause regression into autism.
There are unintended consequences. Every commercial on TV for a prescription pharmaceutical, from bipolar and depression to urinary incontinence or rheumatoid arthritis, we are told about side effects. The length of these commercials is so ridiculous because of the lengthy list of side effects. Maybe the reason we do not see commercials for the MMR or DPT vaccines, for example, is that it would take too long, due to the complications listed for some children ---- the unintended consequences or as said by the prescription announcer, ‘"Serious, sometimes fatal events."
But I think with 2019 approaching, that seems to be a dusty, old comment and an easy way to try and explain worthless research. This information really needs to be added:
Genetic and environmental factors both play roles in the pathogenesis of ASD 5. Available twin studies showed that environmental factors are more important than genetic predisposition 6. Among such factors, microbial dysbiosis is of increasing interest, with accumulating reports in animal models and human epidemiologic studies linking disruptive alterations in the gut microbiota to ASD symptomology 7,8,9,10,11,12.
Since we now know that the genes of the microbiota, the microbiome, dwarf the human genome, the impact of the gut bacteria and viruses is significant
The microbiome is being established in the first 3 years of life, a vulnerable time for regression into autism. There are factors that can disturb this process of gaining a healthy microbiome -- “Modern changes in lifestyle, including improved sanitization, cesarean sections, antibiotic usage, and immunizations are among some of the factors that can shift the microbiota, and are being studied as potential drivers of the sudden increase in immune-mediated diseases in the developed world.”
Antibiotics are often talked about as making gut bacteria, “antibiotic resistant,” but we must remember that one of the first forms of antibiotics was mercury. It’s impact on the gut bacteria may be more significant than people have thought, especially in autism.
Another comment that you offered that I think needs clarification, is this one: ….. but if there is any environmental trigger it’s happening very early on in pregnancy, around the time of conception. This is not something that’s happening after children are born. These genes involved in creating autism are causing very complex rearrangements of the anatomy of the brain.
But take a look what is happening postnatally as the microbiome shapes the brain:
-- the microbiota also modulate a range of neurotrophins and proteins involved in brain development and plasticity.48, 49, 75 ….Other pathways by which the gut microbiota could influence the development and activity of brain tissue include regulation of the release of gut peptides from enteroendocrine cells,204 which in turn affect gut–brain hormonal communication,205, 206 and, as described above, the regulation of microglia homoeostasis.
...the human gut microbiota profile is significantly associated with brain microstructure and cognitive function. These associations were observed in middle-age subjects before age-related cognitive decline. Recent data hint at microbiota as an important factor controlling glial cells in mice (32) and associated with temperament in early childhood in humans (33). How changes in gut microbiota influence cognitive decline remains to be determined, but current findings show that gut microbiota–brain microstructure relationships might play a role in human health.
Herein, we present data supporting the hypothesis that early Bifidobacterium colonization plays a role in neurodevelopment and behavioral patterning....With this experimental manipulation of postnatal bacterial colonization, we aimed to better understand how the early-life microbiome affects long-term changes in animal behavior.
Furthermore, in ASD, these alterations are implicated in increased gut permeability, or “leaky gut”, which allows bacterial metabolites to cross the gut barrier, impacting neurodevelopment during early childhood in susceptible subjects by way of gut-brain axis. In our review, we will discuss the interaction of gut microbiota and brain development in ASD and the signaling mechanisms underlying this interaction. We will also explore the potential for treatment of ASD by targeting the microbiome with probiotics.
We need more research in this area for those who are suffering with symptoms of immune dysfunction, inflammation, and pain in autism. There are dots that are being connected .
Happy Holidays to all of us with children on the autism spectrum. Dr. Hotez, I hope you will join us in helping so many, very, sick children and young adults.
Teresa Conrick is Science Editor for Age of Autism.