Almost Autism:Recovery for Kids, Support & Community for Moms
Having a son with a developmental delay was very hard on me. He didn’t walk until he was 20 months old.
This was extremely hard for me because he didn’t walk until 3 weeks before his little brother was born, and I was having to carry him everywhere.
I suppose the bright side is that he didn’t weigh a whole lot, given that he was also a failure-to-thrive baby. [Read more…]
Some of the first red flags I had from my older son were his failure to eat solid foods, his projectile vomiting any food or breast milk he did eat, and, later, his failure to thrive.
It was so sad to watch my baby dwindle from being born at the 40th percentile for weight down to the 3rd percentile at the age of 18 months.
He crossed three percentile curves on the way down; crossing two of them constitutes “failure to thrive”, but he also fit that definition by dropping below the 5th percentile curve. 
Where were his doctors in all this? Again and again, different doctors told me, “He’s fine” and “There’s nothing to worry about”.
They said this even when I told them that he would throw up after almost every meal and even though his weight percentile was declining. They told me that because his height percentile was growing (for a few months) that there was nothing to worry about. They were wrong.
But I knew this wasn’t right. He had been projectile vomiting since he was a newborn. The doctors told me this was normal, that he was just a fussy baby with colic.
It became extremely hard for me to feed him solid foods later on when I introduced them when he was 5 months old.
It would take a good, solid hour just to get a few Cheerios and Yo-baby yogurt in him. Then he would turn right around and throw it up.
I did anything I could to distract him to get some food in him: sing, dance, have him play with toys and objects, turn on the TV or radio.
None of these really worked, but I was desperate. Many times he would outright refuse to eat, but then he would be starved for his next meal. Other times he would eat some, but then he would wake up screaming and/or wake up vomiting.
I was told by the doctor to limit the milk to 20-24 oz. per day in hopes that this would encourage him to eat more solid food. That didn’t work. He just ate less and cried even more, probably because his blood sugar was always tanked and he was starved.
I was told by the doctor that his feeding strike may be because his teeth were coming in. His teeth came in, and many times after that, he still refused to eat.
I was told by the doctor to give my son gas drops, Orajel and Tylenol because maybe he was gassy and maybe his teeth and gums hurt. This didn’t work.
The older he got, the longer his naps got. I suppose that because he wasn’t getting enough calories to remain active, it was easier for his body to just rest when he could, although many times he couldn’t rest because he would wake up cranky and/or vomiting.
I even made a spreadsheet (I used to be an analyst).
I tracked his food intake for six weeks from when he was 9 months old to when he was 11 months old. He had stopped nursing when his bottom teeth came in at 9 months of age, so I could quantify exactly how much breast milk he was drinking per day as well as his food.
He ate and drank an average of 715 calories per day; he should’ve been getting around 1,300 on average. An average of 60% of his calories came from milk, and this didn’t seem right.
I received a dismissive, condescending attitude from the doctor when I showed the spreadsheet to him. I was waved off (this was not the first time this was to have happened) as if I were just another neurotic, hypervigilant, first-time, New York City mother.
With no help from a doctor except for a list of fattening foods to give him such as butter, cheese, full-fat yogurt, maple syrup, etc., I desperately tried to up the calories in every bite.
Dairy and sugar seemed to be the best choices for calorie loading, but I wasn’t keen on giving him too much sugar.
I am hypoglycemic, and I know that sugar can only exacerbate blood sugar issues by temporarily creating a short-term blood-sugar high, only to have it come crashing down quickly afterwards with the shakes, a headache, irritability and excessive body heat.
So I gave him quiche, yogurt, cheese pizza, bagels and cream cheese, and any food I could think of that I was supposed to avoid for causing me to pack on pounds.
We moved out to the suburbs when my son was 10 months old, and, in this new town and state, his eating issues and poor weight gain were still not a concern to the new pediatrician, that is, until his 18-month checkup.
He had lost weight between his 15th and 18th month checkups, and his percentile had continued to plummet. He was now at the 3rd percentile for weight. This doctor told me to give him Pediasure and put him on a fast-food diet. That was sure to pack on the pounds, right?
I dutifully went to the store and bought packs and packs of Pediasure and immediately thereafter took my son to McDonald’s where he proceeded to… eat 4 or 5 French fries. That was it.
He wouldn’t even eat fat-laden, sugar-sweetened, chemically-altered-to-make-you-want-more-of-it fast food! He did, however, take quickly to the Pediasure, probably because of all the sugar in it. He practically lived on it.
I asked the pediatrician if maybe my son had acid reflux because doesn’t that cause a lot of throwing up? He dismissed me and said, no, it was just a weak gag reflex and he would grow out of it.
By this time, I was a few months away from giving birth to our second son. Although my son continued to throw up at least half of his meals and Pediasure, he did slowly gain weight, as the pediatrician had also given him a prescription for Periactin, which is an anti-histamine that is also used as an appetite stimulant.
He wasn’t walking yet, which was another huge red flag for me. I kept wondering and researching to find out if these two major issues were related, but I couldn’t find anything that said that they were.
The pediatrician seemed to think that they weren’t, but at least he did make a referral for my son to be evaluated by our state’s Birth-to-Three program. Of course, between the time it took for the initial evaluation and the physical therapist’s first visit, he began walking. He was 20 months old, and my second son was 3 weeks away from being born.
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Gut dysbiosis — this topic is the motherlode. It’s one of the two core (in my opinion) reasons for the explosion of chronic childhood illnesses we see today.
First, let’s discuss the numbers behind this epidemic: How many kids did you know when you were growing up that had autism, ADHD, acid reflux, allergies, asthma, developmental delays and/or mental health issues? [Read more…]
My older son with sensory processing disorder (SPD) benefited greatly from going to a land-based occupational therapist (OT) for six months. I asked her what we should do about him learning to swim, given that he had such a bad experience with it when he was 2 years old.
You might remember that he was so overwhelmed by the lights, sounds, the way the water felt, and his gravitational insecurity in the water that one day after class he came home and wiped down half the kitchen to relieve his stress. That’s a pretty strong reaction from a toddler. [Read more…]
WARNING: I am a huge, biased fan of Cindy Freedman and Ailene Tisser of Angelfish Therapy aquatic therapy.
Angelfish Therapy is aquatic occupational therapy for children with developmental delays, gross motor delays and sensory issues, especially those concerning water. This can include kids with sensory processing disorder, learning disabilities, ADHD, autism, PDD-NOS, speech delays, apraxia and dyspraxia.
I began taking my older son to aquatic therapy at Angelfish 4 years ago; Cindy Freedman worked with him for 1-1/2 years.
It was there, sitting on the side of the pool during weekly therapy sessions, that I learned about about retained reflexes. Retained reflexes are ones that a child has kept rather than integrating as a normal part of development. They are typically seen in the types of children listed above.
Cindy told me that my son had a retained Moro reflex, which was the reason for his constant state of “fight or flight”, which for him, meant a lot of anxiety and being upset at the drop of a hat, which made swimming difficult for him.
Before my son had any kind of OT at all, I used to take him for Mommy & Me baby swimming classes at the local YMCA. He would get so upset at being in the water that he wouldn’t be able to learn much at all. One time he got so upset that he came home and wiped down half the cabinets in the kitchen for half an hour just to soothe himself.
Now that I had learned about his retained Moro reflex, his reactions began making more sense to me.
Cindy also told me that he had a retained Symmetrical Tonic Neck Reflex (STNR), which, if it’s not integrated, according to Rhythmic Movement Training International, can lead to:
A lot (75%!) of kids with a retained STNR have ADHD, writes Sally Goddard, author of “Reflexes, Learning & Behavior: A Window into the Child’s Mind: A Non-Invasive Approach to Solving Learning & Behavior Problems.”
And a lot of times, a retained STNR can look like ADHD simply because of the retained reflex. In addition, many times Sensory Processing Disorder can look like ADHD. So don’t put your kids on Ritalin just yet!
The STNR separates the body’s movements from the top half to the bottom half. It’s used to help a baby push off the floor learning to cross crawl. If it’s integrated, a baby will uncouple the head’s movement from the movement of the arms and legs.
Sounds like just a minor point, but it’s not. Many kids, like my son, with a retained STNR never cross-crawled or did so for just a short period of time. My son slithered backwards for a couple of months when he first started to move, then he army crawled from 8 to 18 months. He cross-crawled for about a month and only began to walk at 20 months, which is REALLY late.
Cross-crawling helps wire the brain’s visual processing, which in turn affects learning ability. Think about it: A cross-crawling baby who can bend his neck to look down at the floor then up at his mom mimics the same motion that a child in school does who bends his neck to look at his schoolwork then up to the blackboard.
Teachers: How many “ADHD” kids that you see in your classroom have poor posture and lack the ability to sit up straight and focus? Could it be they have a retained STNR?
Because my son had a retained STNR, swimming was difficult for him because kids (and it seems to be mostly boys) with it can’t uncouple their head movements from the rest of their bodies, so they swim with their heads back and can’t put them down into the water without the back half of their bodies falling down.
So not only does aquatic therapy help with overcoming developmental delays, but it also helps with learning, and, most importantly, helps with water safety for these children. Do you know that drowning is the leading cause of death for autistic children?
If you’re not fortunate enough to live in Fairfield County, CT, the New York City area, the Boston area, or Asheville, NC, you can purchase their videos for your own education. If you’re a PT, OT, etc., you can attend their workshops and get certified as an Angelfish instructor.
In closing, you can see Ailene working with a boy to help correct his balance in this YouTube video:
P.S. My son actually swims now!
When my older son was 3-1/2, I finally learned that he had sensory processing disorder (SPD); this realization let me recognize the signs later on that my younger son had it as well.
My older son began seeing an occupational therapist (OT) when he was 3-1/2 years old. Before his first visit, she had me fill out two questionnaires: a sensory profile caregiver questionnaire and a foundational listening skills assessment sensory checklist. [Read more…]
Here’s how I finally got help for Sensory Processing Disorder.
For my older son, I had a litany of signs for 3-1/2 years that told me something was wrong, despite reassurances to the contrary of his doctors.
It all hit the fan when our nanny left to have her own baby shortly after my oldest son turned 3. Yes, I was extremely fortunate to be a stay-at-home mom with a nanny; but, looking back, I really needed the help.
My older son had been used to having either me or the nanny completely to himself. All of a sudden when she left, he was forced to share me with his baby brother. So what did he do?
He cried. And cried. And cried. And cried. And cried. Over EVERY little thing. [Read more…]
Believe it or not, acid reflux medication dangers are real, and these medications do major harm to your body. Shocking, right?
It’s true. All of those medications (Prevacid, Nexium, Zantac, Prilosec, omeprazole, even Tums) reduce stomach acid, which is what they are designed to do.
The problem is that acid reflux is actually caused by TOO LITTLE stomach acid, not too much. Counter-intuitive, right? So what happens when you have too little stomach acid? For starters, you can’t properly digest food, leading to nutritional deficiencies, particularly magnesium, calcium and vitamin B12.
A magnesium deficiency is linked to:
A calcium deficiency is linked to:
A vitamin B12 deficiency is linked to multiple neurological disorders, including
Not only do acid reducers cause nutritional deficiencies, but they also take away an important component of our immune system. Stomach acid is used to kill nasty bugs, viruses, parasites and bacteria. Without enough stomach acid, guess what happens? That’s right – infection.
By prescribing proton-pump inhibitors (PPIs), doctors are putting their patients at a higher risk for infections like pneumonia and gastroenteritis, as well as getting more colds and stomach bugs.
In addition, by taking acid-reflux drugs, you’re more likely to get sick more often because your immune system can’t fight off these offenders. It also makes the rest of the gastrointestinal tract susceptible to bacterial overgrowth.
Is it worth taking acid-reflux medication? I don’t think so, and I can tell you that, as a mom, I was furious at the doctors who prescribed them to my boys for their acid reflux after I found out how truly dangerous these drugs are.
Because of my son’s failure to thrive, our pediatrician sent us to see Vicki Kobliner, a holistic nutritionist, who’s also on the board of Epidemic Answers with me.
Given that Crane Man has constant fatigue and stomach pain, poor growth, mild sensory issues and developmental delays, Vicki suggested having preliminary tests for mitochondrial dysfunction done. [Read more…]
A few months ago, my then-6-year-old son had a definite change in his typically sweet personality for the worst.
Given that he already been recovered from sensory processing disorder, I was confused.
This time, instead of crying at loud sounds, bright lights, fast motions, etc., he was ANGRY. In fact, every time I would ask him to do something, he would yell back at me and say that I hated him and that I was yelling, when in fact I wasn’t yelling at all.
Almost every day he would look at me with total hatred and anger, stomp out the front door and tell me he was running away from home.
I was really confused because these are supposed to be the “golden” years of childhood when there’s not so much hands-on work to do with children this age and they are happy to be with their family.
I kept thinking “If he’s like this as a child, what the heck is he going to be like as a teenager?”
This went on for a few months until I remembered about Lyme disease; this blog is about Lyme disease symptoms in children.. Lyme disease can cause sudden changes in behavior, and we live in tick-ridden Connecticut, so this wasn’t a far-out hypothesis.
Lymedisease.org lists the following common symptoms of children with Lyme:
Here a few other symptoms in children:
It was the uncharacteristic behavior, outbursts and mood swings that really made me suspect that it might be Lyme.
I did more research on it, especially about Dr. Charles Ray Jones, a Lyme pediatric specialist who practices near my town. I had heard him speak before at Dietrich Klinghardt’s Klinghardt Academy in New York City a few months prior; Dr. Klinghardt also specializes in difficult-to-treat disorders, like Lyme, autism and autoimmune diseases.
I had brought a friend who suffers from possible Lyme disease with me to the Academy’s workshops, and she knew of Dr. Jones and his amazing work.
Dr. Jones is fairly famous in the Lyme disease community for recovering children from what is thought to be autism, ADHD, SPD, OCD, ODD and other neurodevelopmental disorders. It turns out that in MANY of these cases, these children actually had Lyme disease.
Dr. Jones has recovered over 10,000 children from these disorders. He prescribes various antibiotics for a course of many years, whereas if you were to go to a typical doctor for treatment of Lyme, he or she would prescribe antibiotics for a few weeks or months.
Personally, I wouldn’t want to subject myself or my children to antibiotics for any amount of time these days, knowing what I know about how they destroy the immune system. But, hey, the man gets results, and the results show that many of these disorders are, in fact, from Lyme infections.
In his presentation, he gave a few examples of children. One of them was a young boy who at a very young age (5 or 6) had already been in and out of juvenile detention for things like harming animals, which is a known sign of a child or person on the road to becoming a hardened criminal. After a few months of treatment from Dr. Jones, this same boy had become the sweetest, most likeable child.
Dr. Jones typically suspects Lyme if the child has any of the following conditions:
What’s interesting is that 50% of Dr. Jones’ patients have no known history of being bitten by a deer tick and fewer than 10% have a history the classic Lyme bull’s-eye rash (erythema migrans). In fact, many times the mother unknowingly passes the infection on to the child during pregnancy or childbirth.
Lyme disease isn’t just infection from the Lyme spirochete bacterium. There are also co-infections (bartanella, babesia and erlichia) that typically occur at the same time. Or someone could just get one of the co-infections without having any of the other co-infections of Lyme.
Lyme disease and its co-infections are difficult to test for. One reason is due to the corkscrew shape of the bacteria, which allows them to burrow in without being easily detected.
Spirochetes (see the word “spiral” in there?) are one of the most ancient forms of life on this Earth, and they know to survive and adapt to rapidly changing environments.
Lyme can masquerade not only as autism and development delays but also as rheumatoid arthritis (RA), fibromyalgia, multiple sclerosis and neurological damage. In my mind, it should be one of the first things tested for when an autoimmune disease or neurological dysfunction has a sudden onset. It’s becoming a hidden epidemic, as not a lot of doctors know to test for it.
There’s an excellent documentary about Lyme called, “Under Our Skin”. I specifically remember a beautiful woman documented in the film who became increasingly contorted. She gradually lost control of many of her muscles, and doctors, of course, thought she had multiple sclerosis (MS).
The reason that we know it wasn’t MS is that she regained her strength and control after a very long course of antibiotics, so it was obviously an infection. How many people that have MS, RA, fibromyalgia, autism or developmental delays simply have Lyme? It’s a real shame they’re not getting proper treatment.
Lyme is not just limited to the Northeastern U.S. anymore; it’s now spreading west to places where you wouldn’t think deer ticks are. Deer ticks are not the only means of transmission: mosquitoes, fleas and ticks can also carry the infection.
Given that there is an increasing number of people with gut dysbiosis and toxicity, and thus, a compromised immune system, it’s not surprising that their weakened state allows for such an infection.
Most doctors will run a Western blot test, but it’s not always accurate. An IgG test would show elevated levels when fighting an infection for a long time, and an IgM test shows if an illness has been reactivated.
Given the confusion surrounding the issue of detecting Lyme, I asked our naturopath to test my son for Lyme with his ASYRA (yes, it’s a little “woo woo”). Sure enough, my son was infected with bartonella, also known as cat-scratch fever.
Rather than going the antibiotic route, our naturopath prescribed a super-strong herbal remedy. Ever since treatment began a couple of months, my son hasn’t been hateful or hurtful and is now the super-sweet boy I remember. His favorite words now are, “I’m so happy I could cry.” Me, too!
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