I am releasing this story here as a means to get this story out to as many people as possible. I am a physical therapist for 14 years, a healthcare provider; I am a husband and a Dad. I do not work in pediatric physical therapy. That particular patient population is not my clientele, and I do not plan on specializing in pediatric physical therapy in the future.
I have nothing to gain from this at all except for my colleagues in health care and the doctors who refer to me to think of me as a quack or a nut. That being said, I feel that it is my moral and ethical duty to share this story to you and anyone willing to take the time to read it. It may help them or someone that they know.
My wife’s sister’s son is autistic; I had an entire pediatric internship in pediatrics dealing with developmentally delayed children, some who were diagnosed with autism. I have a few close friends with autistic children. I KNOW what autism looks like.
Sensory and Feeding Issues
I had always noticed things that appeared to be sensory issues with my daughter. At about four months, I observed hand stimming when she became excited. When she began to stand and walk she was on her toes constantly. She was a fussy eater, eating only very small selection of foods. She hated foods or objects (soaps, playdough) with slimy textures.
All of these concerns were brought to the attention of our pediatrician who dismissed them, occasionally with a roll of the eyes and assured my me and my wife and me it’s something she’ll outgrow. Outside of these concerns, she appeared to be developing normally and interacting well with family and other children.
Recurrent Ear Infections
My daughter Mia had been given antibiotics on and off since November 2010 till April/May 2011 for frequent, reoccurring ear infections. Between April and May of 2011, she was on four different antibiotics (the last of which being Augmentin) for approximately 5-1/2 weeks straight, maybe more.
During the 5-1/2 straight time span, she began to progressively regress developmentally and her sensory issues began to worsen. She started tuning us out, not looking when we called her name, even when we shouted her name. We would position ourselves right in front of her and try speaking with her and she would look right through us.
She began to keep to herself, not playing much with her brother or children in her nursery school class. She wouldn’t allow us to change her diaper or clothing without throwing a fit or tantrum.
Mia stopped going up and down stairs, a skill that she was already performing regularly instead, she would drop to her rear and throw a tantrum until we carried her down.
Prior to this she was an excellent sleeper and would sleep the entire night through without awakening. She began awakening repeatedly in the night crying and was unable to be consoled.
On Wednesday, June 1, we went in her room to get her ready, and she was GONE – not physically – but our child, Mia, was like a robot/zombie. She would look right through us with a glassy-eyed gaze, almost lifeless.
Mia stopped responding to questions appropriately – answering us only in “pre-recorded” phrases and lines from her favorite TV shows and using phrases my wife and I had used in the past in the exact same fashion (tone, pitch, etc.)
The phrases she used were totally not appropriate to the questions asked. For example: “Good morning, how are you Mia?” Mia’s response was, “What color is the grass? The grass is green – Yes, Very good Mia”. “How are you Mia.”
She once again refused to walk down the stairs, so we carried her down stairs to the living room, where we have a small ball pit that our kids enjoy playing in. We were horrified when we observed her taking balls out of the ball pit and lining the balls up in a row – and throwing a tantrum if we moved one of the balls out of line – one of the well know signs and symptoms of autism.
She refused to walk on grass – when I put her on it, or even if she walked near it, she would drop to her rear end and throw an inconsolable tantrum. Prior to this she LOVED running on the grass and playing ball on the grass. Dina and I watched in complete horror – as she regressed day to day. We were unable to sleep for days – we knew what we were seeing happen and couldn’t stop it.
Early intervention was booked up for weeks; the earliest neurology appointment we could get was almost three months away. Days blended into nights as neither one of us were able to sleep wondering what would become of our daughter once we were dead. Would she end up in a home? Is it fair for us to expect her brother or any other family member to take care of her these are the things that occupied every moment of our lives. We went to work and existed on autopilot.
“Your Daughter Is Probably Full of Yeast”
By luck, chance, and Grace of God – through a physical therapy colleague I was put in contact with Paul Cimmins of AutismRadio. Paul has an autistic son, and has been extremely active in the autism community – he is up on all of the mainstream treatments as well as many of the not so mainstream treatments based on theoretical causes of autism.
Paul first tried to calm me down as I was totally beside myself wondering what was ahead of our family. He then asked me about the history – what had happened, etc. After hearing about her repeated antibiotic usage, especially most recently a 5-1/2 week stretch of them he said, “Your daughter is probably full of yeast”.
Paul went on to explain that one of the theories about causes of autism is that prolonged antibiotic use. The antibiotics kill the “bad” bacteria, but our gut/stomach is also home to “good” bacteria that help to break down food, clear the system of toxins, etc.
When these good bacteria are killed off, it throws everything off. Food is not digested appropriately, and yeast begins to grow wild in the body. The stomach/gut feeds the brain, and all of these harmful things go to the brain.
Paul’s recommendations: he suggested that we begin giving Mia children’s acidophilus supplement (good bacteria found in yogurt) two times a day in conjunction with a gluten- and dairy-free diet.
Out of sheer desperation, we decided to try the regimen that Paul suggested, not really believing it would make a difference. To our amazement, we saw positive changes within a few days. Paul explained to us that in a day or two Mia would run a high fever. He explained that this was called the Herxheimer effect and the body’s response to all of the yeast die off once acidophilus was introduced to her system that was loaded with yeast.
Two and a half days after initiating this regimen, Mia had a fever of 105.6, which broke in 12 hours, returning to a normal body temperature. We saw clumps of white in her stools, and even touches of white within her tears, which Paul informed us was the yeast that had died-off.
Her attentiveness increased. We would speak to her, and she would understand and respond appropriately. She began to negotiate stairs again, she stopped fighting us during changing time, her eye contact has drastically increased, she slowly began to stand on grass, and then to run on the grass barefoot! (huge sensory gain), and her robotic speaking and echolalia completely stopped. She stopped lining toys and objects up. She began sleeping through the entire night without awakening.
We set up speech therapy, occupational therapy and ABA therapy and worked with her every opportunity we had. We virtually eliminated TV when she was awake in order to encourage interaction with us and her brother Nicholas. One and a half years later, Mia is a completely different child than on June 1.
These progressive and amazing changes have been noticed by her teachers at nursery school, and her therapists and family. She is extremely social and affectionate, loves engaging in pretend play loves hugs, kisses, and teasing her brother. Toe walking has decreased to only about 5% of the time. Many of her sensory issues have diminished significantly or completely resolved.
In hindsight, her hand stimming all began when grain cereal was added to her diet and from that point on, she began to progressively regress especially after the long period that she was taking antibiotics on and off.
After doing an exhausting amount of research since our journey with Mia started, our feeling and hypothesis is that my daughter was beginning to spiral downward into autism, and because the diet and supplementation was implemented at the early stages, we were able to reverse the process.
By the grace of God, I was put in contact with Paul Cimmins, not a doctor, but a caring and knowledgeable father of an autistic child who was not afraid to look and think “outside the box” for potential causes of autism. His dietary recommendations and the incredible work of her therapists has saved our daughter from a life of autism. Our family going gluten-free also yielded some other incredible and unexpected results.
Mia’s older brother Nicholas was beginning to have very frequent tantrums and melt downs. He had a rash that would just not go away on his cheeks, on his bottom and on his belly. When our entire family went gluten free, his rash disappeared, and his “bad” behavior significantly decreased.
After going gluten-free, we began to observe that Nicky’s tantrums and behavior problems decreased but still existed but only on Friday nights, Saturdays and into Sunday. It was not apparent at first, but we finally figured it out. We were all eating gluten-free as a family, BUT we didn’t suspect that gluten intolerance was an issue with Nicky. We finally figured out what was happening!
Because we did not want him to feel left out or excluded at school, we allowed him to have pizza on “Pizza Day” which was every Friday at his school. We also realized that Nicky’s rash would come back if he played with Playdough at school which contains gluten. We finally found a local pizza place that had gluten-free pizza, brought the kids gluten-free pizza on “Pizza Fridays” and Nicky’s rash and behavior issues resolved.
Dina had very non-specific knee pain in both legs that no doctor was able to find a cause for. As a child, the pain was chalked up to being growing pains, as she grew into her 20’s, 30’s and now at 40 years old, these so called growing pains persisted. Once going gluten-free, these symptoms drastically decreased.
Dina would also get a random patchy rash on her stomach that, like her knee pains could not be explained or cured by any doctor since childhood. Once going gluten-free, this rash also resolved.
Dina always had GI symptoms which she just accepted as part of her life. These symptoms drastically improved since going gluten-free. On and off throughout our relationship, Dina would seem to slip into phases where she would become deeply depressed, and although everything in our life seemed great and very stable on all levels (family, finances, etc.), she would enter this deep depression and not be able to answer why. At times, I often feared for our marriage as she genuinely seemed unhappy with our life together.
When Mia’s issues started, although I knew we would do whatever was necessary to help our daughter, I feared for the impact this added stress/situation would have on our marriage. I honestly expected her depression to become worse and her episodes of irritability and unhappiness to become more severe and more frequent. To my surprise, these episodes disappeared.
I couldn’t believe it, but with the added stress, worry and uncertainty of this situation, Dina’s depression and irritability disappeared in the absence of gluten!
Myself (Chris Ford)
For years I struggled with diet and the quest to look better as I worked in the professional wrestling industry. I would do the gold standard body building work out: high protein, lower fat and carbs and all the carbs HAD TO BE whole wheat, whole grain, multi grain, etc.
I would diet the pounds off but had to really work hard to do it. I cut calories drastically, far below my resting metabolic rate, and in spite of this, it seemed as if I had to do what I thought seemed like an unusually excessive amount of cardio to take off small amounts of body fat. Since going gluten-free, my belly fat seemed to literally melt off of me.
I am able to eat significantly way more carbs then I ever have (just no wheat) – shocking my friends and family who were previously used to watching me eat very little carbs ever! I am never hungry. I never feel deprived, and I am keeping the weight off and staying lean with a normal / minimal amount of cardio exercise along with my weight training.
A Gluten-Free, Healthier Family
At first we were unaware and unsure of the incredible effect a gluten-free diet would have on us and why. While we were strict with the children’s diets we would occasionally cheat, trying a slice or two (maybe a whole pie between the both of us) of our favorite neighborhood pizza. These cheat sessions resulted in the return with a vengeance of Dina’s GI issues, knee pains, random rash patches and a resurfacing of depression and irritability.
The good part was we were able to recognize what was causing this, and now we avoid cheating at all costs. It really is amazing what diet can do. This experience with gluten free has prompted the Ford family to drastically limit dairy intake, and we buy and eat organic whenever possible.
– Chris Ford (Chris can be reached at [email protected])