(My daughter turned 13 on Sunday. Yep, she was born on April Fool’s Day. She asked me to call her “Trinity” for the purposes of this blog. So, Trinity, this one’s for you!)
(This post draws on data from the CDC of the United States, but that in no way implies that we are only interested in the welfare of American children. This is a global fight.)
If you’re reading this blog, you know by now that the CDC released new autism prevalence numbers last Thursday. Yesterday I attended the “Autism is 1 in 88” press conference presented by grassroots autism advocacy organizations. If you haven’t seen it, I recommend it. Each and every speaker comes across as intelligent, knowledgeable, and fed up. Therefore, the press will do its best to ignore it, and we will have to make it go viral. Mark Blaxill spoke at one point about one of my favorite under-represented topics: We Thinking Moms are not JUST fighting for the 1 in 88 currently diagnosed with an autism spectrum disorder (as if that’s not enough); we’re also fighting for the nearly 50% of American children that are chronically ill, many of them requiring daily medications. This country spends more money on health care — including all that preventative health care — per capita than any other country, and yet our kids are getting sicker and sicker. Let that fact sink in. Once you do, you have to start asking questions. Big questions.
My journey to TMR began with my son’s health issues. As a tiny baby he had tremendous difficulty sleeping for more than an hour or two at a time. His sister wasn’t much of a sleeper, so poor sleep wasn’t a shock, but this was different. I realized after a while that his nose was stuffing up and waking him up. Hour after hour, night after night. Needless to say, this was a problem in our house. (Mom gets really cranky when she doesn’t get sleep!) His doc was no help whatsoever, but on my own I figured out that he was much better if I didn’t eat any wheat or dairy. Then a cousin told me about NAET, an allergy elimination technique that knocked his allergies on their head and improved our lives enormously.
Just as we were getting the allergy stuff taken care of, he came down with his second ear infection. The ER doc prescribed a high-dose antibiotic. “Bryce” was just starting to speak. Or so I thought. A few months later, he still had only four “words” and they were different words! I was baffled: his sister, who is HIGHLY verbal, didn’t babble and didn’t say her first word (mama) till she was about 12 months old. Bryce babbled a lot and came up with dada at 9 months. I was sure he was going to blow her out of the water and kept waiting for the flood of words to begin.
At 19 months, I was still waiting. I had his hearing checked: fine. I had him evaluated for Early Intervention, but he didn’t qualify because his receptive language was fine. A couple of months of mostly fruitless speech therapy went by, and as I was semi-desperately Googling one day I came across this website dedicated to “Childhood Apraxia of Speech.” I read the description and said, “That’s him!” The prognosis did not look good. It seemed he would require intensive speech therapy and would likely always retain marks of his difficulty.
A good friend happened to ask me soon after if I’d considered apraxia. I said, “Yes! That’s what I think it is!” I couldn’t believe she’d heard of it. This friend has twins a year older than Bryce and one of them had PDD-NOS. She was plugged into this amazing network of moms who were doing some kick-ass biomedical interventions. She told me two of them had kids with apraxia, and one in particular had made great strides. A few conversations in, and I was hooked. I read The Late Talker and started high-dose fish oils right around Bryce’s second birthday (he was still nursing). Then I read Enzymes for Autism and Other Neurological Disorders and started him on enzymes and probiotics. Every time I made a change or added something we got a big jump in speech. The kid who couldn’t put two syllables together on his second birthday started using sentences a few weeks later. (Today, three and a half years later, he bears almost no trace of his previous disability.) Then I went on to Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies (affectionately called “The Four A’s Book”). That’s when I recognized my daughter, too. According to this book, she had ADHD and her case was eerily similar to the young girl in the book who had PANDAS. Turns out, similar therapies were useful for her, too. I started her on fish oils and her anxiety level dropped literally overnight. Added in some other supplements that Andy Cutler recommended for OCD and anxiety (I didn’t even know who Andy Cutler was yet), and we were suddenly operating in a different territory.
So, wait a minute . . . I was getting advice on treating my kids’ speech disorder and ADHD from moms and doctors who were dealing with autism. But my kids didn’t have autism. Not even close. And yet . . . they responded to the same treatments and had similar health histories (except that I stopped vaccinating when my daughter was 15 months old). Was it possible that their issues came from the same mechanism as autism, only in a less extreme form?
I began viewing the “autism spectrum” differently. Suddenly it seemed there was an “invisible” band on the “less affected” end of the spectrum, just as infrared light adjoins ROY G BIV on the electromagnetic spectrum. Infrared light has all the same properties as visible light, except that it does not excite the rods and cones in your eyes. That band may be invisible, but it’s also huge! It’s filled with kids who have food allergies, get recurrent ear infections, have multiple rounds of antibiotics before they’re two, and can’t sleep, breathe, eat, or learn without difficulty or medications. It’s filled with older kids with learning disabilities, ADHD, and sensory processing disorders.
I’ve seen some version of this progression over and over again. Child first presents with some kind of food allergy or intolerance. Often it begins before the child is on solid food. Then child gets one or more ear infections and is treated with antibiotics which kill any good gut bacteria child might still have had. After the antibiotics, the child has either chronic constipation or diarrhea. Perhaps the child has sensory processing issues making certain types of activity excruciating for all concerned. Perhaps the child has trouble settling down, inviting thoughts of hyperactivity or ADD. At some point in this scenario, the child receives a number of vaccinations on a day when the child is not feeling up to par, perhaps even on antibiotics. Child has fever and seizures, and screams incessantly. Parents call pediatrician in a panic and they’re told it’s not a problem. Just give Tylenol and everything will be fine. If that doesn’t do it, child receives another round of vaccines a few months later. Child suddenly loses previously acquired skills and no longer pays attention to people and objects he/she previously loved. Other allergies (and asthma) show up. Seizures become more common. Mitochondrial damage becomes apparent. OCD and anxiety cannot be shaken.
How many children do you know who have one or more of the health issues mentioned in the last paragraph? Personally, I can’t think of more than a handful that DON’T have any. Asthma, life-threatening food allergies, ADHD, sensory processing disorders, OCD, anxiety, learning disabilities, and chronic gut issues run rampant in children these days. “Autism awareness” takes on a whole new meaning when you realize there’s an invisible band to the spectrum that is MUCH larger than the visible band.
As Louise Kuo Habakus said in the press conference yesterday, “You think this is not your problem? This IS your problem.” It is everyone’s problem. No country can afford chronic illness in half of its citizens.
~ Professor
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I have been following TMR for a couple of months now but have never commented because my son doesn’t have autism. He has apraxia. I’ve known for a few months but I finally got the “experts” on board this week. Ive been thinking this whole time, I’m wondering if any of these autism approaches would help him and then the post today links me to your post! I have him on fish oil but that’s it so far. I’ve also ordered nutriveda but haven’t received it yet. Where do I even start? I’m so on board with everything you ladies talk about. I vaccinated him on a slower schedule – only one or two – and stopped once I noticed his delay in speech. So he has no mmr or chickenpox and I’m currently fighting to reject those. He starts preschool in February because he needs services. Any advice or a direction to start in would be greatly appreciated! Thanks!
Okay, you’ve got the fish oils going… Have you checked out cherab.org? It’s run by the authors of The Late Talker and they talk about a particular formulation that has been known to be helpful for apraxia. Their site is not really easy to navigate, but this is where you can check out the one they got the best results with: http://www.shop-in-service.com/proefa.htm Keep in mind, too, that if you’re only doing a little fish oils, you might want to increase the dosage. Be aware that fish oils can thin the blood a bit, though.
The next IMPORTANT thing to work on is gut healing. You can get a huge headstart on that with digestive enzymes (I recommend reading Enzymes for Autism and Other Neurological Conditions), and probiotics. Strep is a funky thing in our house, so I avoid probiotics with s. thermophilus, which is a form of strep. You may want to do some kind of test to determine what gut bugs your son may have and then find specific killers for that. There are a number of them that can be worthwhile.
You might want to research what’s known as “Andy Cutler chelation.” I haven’t done that yet, but I might be more interested if my son had been vaccinated at all.
Another thing you might want to consider is finding a good homeopath. There are a number of approaches to this sort of healing in homeopathy. One of them is called CEASE (described in a book by Tinus Smits), and another is classical homeopathy. I recommend The Impossible Cure, by Amy Lansky, to get an idea of the kind of power you can get from homeopathy.
Check in again and let me know how you’re doing.
Is it appropriate or permissible to put this entire article on my Autism is Reversible Blog?
I was going to reference it, but it’s so well written and the message so important that I want it just the way it is.
Rebecca,
Thank you so much for your interest. I have to say that I’m really flattered! And delighted to say that it is both appropriate and permissible. Our only requirement is that you include a link back to the TMR blog.
Professor
Thank you, I will be sure to create the link back.
I have linked my blog to yours also as if this is representative of the stellar writing on your blog, I want my readers to benefit also.
Thanks for taking the time to write this article.
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Love this Post! Thank you for explaining it in such an easy to understand way that this former chemist loved (geeky I know) !
I just linked to it on my facebook as part of my AUTISM AWARE posts a day… trying to shed light on Autism as a viewed from the trenches- from the moms and dads who live it and breath it every day…
thank you for sharing….
Hey, Baby(food)Steps! Delighted to make your acquaintance. I loved chemistry in college and if I’d figured that out earlier, might have majored in it. Glad to hear I connected with you. 🙂
Excellent post! Dr. Theo really sees a need for subcategories for medical issues. I’d love to see that happen so children are treated for individualized medical conditions. We have IEPs why not medical?
I’m thinking that more and more, Julie. No one follows the progression I listed in the post exactly. They all have variations depending upon what exposures they have, the particular mix of gut bacteria they start with, the timing of the exposures, etc. It’s really, really individual. No one treatment works for everyone. No one exposure is involved in the etiology for everyone. There are kids with autism who have never had a vaccine. Some kids with autism don’t seem to have gut issues. The more we know, the more we know that each child needs individualized treatment.
Totally love your visual for this Prof! Spot on!
Thanks! I was trying to get one that focused more on the visible spectrum and the infrared (and really the infrared would be best on the left) rather than the WHOLE spectrum, but this is the best I could come up with.
Dr. Natasha Campbell McBride connects ALL THE DOTS in The Gut and Psychology Syndrome. A MUST-READ for every mother (every person) now alive imo. She explains in detail how the gut dysbiosis happens, how it gets passed to the next generation, usually worse every time, and HOW TO HEAL IT. I cannot recommend this enough. Lots of info also at gapsdiet.com for starters.
Yep. That’s a great book. The only beef I have with her is her insistence on mucho meat. The Body Ecology diet accomplishes much the same thing without that emphasis. Possibly the best thing about Dr. Campbell-McBride’s book for me was her rundown on how to vaccinate safely. And I believe she mentions that when there are autoimmune conditions in the parents there IS no vaccinating safely. That’s the only place I’ve seen that stated that strongly and it stuck with me. The more I’ve learned, the more I think she’s right and as I have SEVERAL autoimmune issues, I’m REALLY glad I listened to the people who were telling me to research.
Thank you for posting I have never made connections like that. My oldest 8 had a speech delay and OCD One of my twin girls 7 has dyspraxia and dyslexia. i have been fighting with doctors and school systems to give my twin the help she needs. Have left one doctor for another when I asked to slow down the shots for my youngest, son 4. I have also found a wonderful neurologist for my twin girl. I’ve been doing this now for 6 years! Fighting for my kids and will keep it up! Thanks for the blog it is a new resource for me
We’re glad to have you, Dawn! The more you know, the more you can do for your kids. Nobody ever talks about the effect of all the school board fighting on people’s lives and marriages and nerves. I think that’s one of the big causes of stress for the parents of children with chronic conditions.
Awesome, Katherine! So glad to have you aboard. We love it when people solve the puzzles and their kids get better. Which is not to say that we don’t love people who haven’t solved the puzzles yet, because part of this is spreading the word to HELP people solve the puzzles.
Homeopathy was really good for my son, too. First remedy helped him with a whole bunch of sounds that were eluding him.
Wow I had no idea about all this I just started doing research on vaccines and health issues. If any one knows more website’s and books to read please let me know I have been reading for a few weeks and am shocked to find all this out. Thanks for the post.
Jeanie, Vaccine Epidemic, Evidence of Harm, and The Vaccine Guide are all worthwhile books. If you want to get started the National Vaccine Information Center is a great website to get you started: NVIC.org.
This describes my son exactly. From the moment he got the Hep B shot (on his 2nd day of life!) he did not stop crying or sleep. I was told he was a colicky baby. He had a horrible rash around his anus with blisters that looked like open sores. His rash was so severe that the doctor had to call in a perscription diaper rash cream that was only available through his hospital. My son never slept as infant and with his chronic gagging, we had to put him to sleep in his car seat every night in the middle of our bedroom for fear that he might choke. When it was time to introduce solid foods, he developed chronic diarrhea with everything that he eat. It came down to only five foods that he could tolerate without getting sick. He cried ALL THE TIME. We saw so many doctors who were of no help. Finally at 6 months we took him to see a Naturopath and stopped vaccinating. When we started biomedical with Tristan, his doctor ran a food sensitivity panel and he was sensitive to 70 foods!! Depending on the day you met my son and depending on what he had eaten, he could appear anywhere from autistic to having “autistic features”, mixed expressive and receptive language disorder, ADHD, Global Developmental Delay, Sensory Processing Disorder, to Nuerotypical. Our DAN doctor told us that my son was not autistic but had food sensitivities and told me to get the book Is This Your Child? by Doris Rapp and Brain Allergies by William Philpott. These books blew my mind but finally explained my son and his “jekyl and hyde” behaviors. It has been a long road since he was first diagnosed at 20 months with autism. He is 5 years old now and has lost the autism diagnosis but still struggles with his communication disorder and some sensory issues. His sensitivites are becoming less and less with Homeopathy and I anticipate he will grow up to be just fine 🙂
Our son was born in 1992. You have perfectly described his descent into Autism. Shots, shots, shots. Sick,sick,sick. 22 rounds of antibiotics in the first 2 1/2 years of his life.Asthma, nebulizers, allergy testing. Loss of all skill and language. Autism. We had no computer! No connection to others! A sickening amount of untested pharmaceuticals…and I mean sickening, that we were told by “them” would remediate the Autism. We are extremely lucky that the connection to the world, through the internet came along when it did. I can’t help but wonder if we had only known sooner, how much less damaged his precious brain would be. How much more we could have recovered him from that damage to his brain. We have to keep beating the drum. We have to affect change on this world,for the sake of all the children to come.
Yep, KFuller. As Tex put it so eloquently, “Facebook is important!” Our ability to network has been a gamechanger, and it’s the ONLY way this situation is going to turn around.
I am sitting here reading this and crying. You are describing my 5 year old son. He had Salmonella at 16 months and was hospitalized for 5 days and put on a high dose antibiotic, He developed gluten, dairy, soy and egg intolerances. He has megacolon and is still in diapers. He has speech delay but not enough to qualify for help. He doesn’t have autism but when I read Jenny McCarthy’s books on her sons autism, they spoke to me because my son had so many of the same issues and I started following autism groups on facebook to learn what the amazing mother warriors were doing to save their children. I am determined to save my son and to spread the word to other mothers who are trying to save their children. Thank you for the amazing work you, and the Thinking Mom’s Revolution, are doing.
So glad to have you here, Wendy. Have you found a good gastroenterologist? That seems to the be the tricky thing for so many. GIs don’t take these issues in kids seriously enough. I have a three-year-old niece with chronic constipation and a constantly bloated tummy (in addition to severe allergies and asthma, btw) and her doctors keep prescribing metamucil or the equivalent. How is that addressing the problem?
I want to scream from the rooftops: This lady will help you!!!! She has reversed autism, food allergies, stomach issues, yeast problems…http://www.drmteitelbaum.com/ If you don’t live in NJ, fly there! She has reversed my MS. Be open minded.
I appreciate this post. It is all connected. My child has severe food allergies and intolerances, SPD, hyperlexia, a speech disorder, and struggles with yeast overgrowth and occasional eczema. We don’t belong to the autism community because he doesn’t meet the criteria for autism, but he has many of the same symptoms. We are on no meds now, just great food and supplements and we are doing well. But it has been a long road, and I know parents whose children have 1 or 2 of the issues my son has, yet have no idea why or even that such things are not a normal part of childhood. Why is it just acceptable now for our children to be sick and suffering?
Yes! Yes! Yes! Why are so many people willing to just accept that “that’s the way it is”? Children CAN be well. Why are we content to have so many that are so sick?
THIS IS MY SON!! Honestly, I never connected ALL of the dots until I read this post. Clicking along great until about 11 months old, then almost a year of chronic ear infections ending in a bout of pneumonia. This landed us in the hospital for 3 days just after Aidan turned 2. Behaviors and impulsivity increased slowly during that year, but EVERYTHING changed for the worst after the hospital stay. We struggled for months with school, with family, just trying to cope with our out-of-control two year old. And I was pregnant again and miserable. Our mainstream pediatrician finally referred us to a pediatric neurologist, who met us at the door with her prescription pad in hand. THREE daily meds for LIFE was her recommendation for Aidan, who was two months shy of his third birthday. We said HELL NO and got out of there. We left our pediatrician soon after – I questioned vaccines and he told me NO doc in the practice would see me if I chose ANY schedule other than the AAP recommended one. We found our current doc and Blaze, and began our slow and steady climb up recovery mountain. Brain Balance is the program that finally (after 3 1/2 years of biomed) gave me my Aidan back. Keep fighting, Thinking Moms and Dads. Your stories ARE being heard and parents ARE paying attention. Recovery IS possible. Much love and respect to all of you.
Grrr…phone did it again! Sorry! This is Allie
http://www.brainbalanceaidan.blogspot.com
Thanks for your comments, Allie! You are exactly the sort of person this post was written for. I’m glad you found Blaze a ways back. And I’m glad you were not ready to accept three meds for life for your not-quite-three-year-old!
I know this is going to sound truly crazy – but – I am kind of wondering the opposite. When I was little around 3 (now in my 40’s) I screamed constantly (for no known reason) and could not talk. I came down with meningitis and was hospitalized with high doses of antibiotics and a month later I talked (around 3 1/2). My daughter screamed all the time (for no known reason) and could not talk when she was 3 1/2. She came down with something that resembled flu but the docs thought it also might be Kawasaki’s disease where your blood vessels are infected (something like that) anyway, they gave her a high dose of Rocephin and within a couple of weeks she began to talk. My youngest daughter has NEVER been sick, is now 5 and still cannot talk. Crazy as this sounds I am wondering if there is some blood infection or something that we (my family) are born with that is blocking speech development. I know it sounds CRAZY but having two people only being able to speak after intense dosages of antibiotics and the third with no antibiotics and not speaking – you wonder.
Actually, Heidi that doesn’t sound crazy. One of the things I left out (aside from a brief mention of PANDAS) is that many, many of the kids we’re talking about are also dealing with chronic bacterial infections, frequently strep. The strep causes a constant stream of antibodies to be formed which puts a tremendous stress on the body in the first place, but then turns into an autoimmunity. Often, the treatment for PANDAS in the medical community involves long-term antibiotics, which bring down the level of antibodies and that in turn brings down the level of inflammation in the brain allowing it to work again. More recently, the medical community have begun to recognize there are other infectious agents in addition to strep that can be causing similar syndromes. They all involve an autoimmunity of some sort. There is a tug-of-war going on in the hearts and minds of people who don’t want to use antibiotics (knowing the downside), but who know that they have to reduce inflammation in their children’s brains. Sounds to me like all your kids might get some benefit from some anti-inflammatory supplements. Good luck!