On Tuesday, August 16, 2016, I read an article in the Wall Street Journal with this title: Treating Children for Sensory Processing Disorder. Since I have treated hundreds of these children, I am posting here some of the facts that I have learned. First of all let me provide some extracts from this article that is all about a diagnosis of “Sensory Processing Disorder” (SPD). The article says that SPD is believed to affect 5% to 16% of children in the United States.
I want to make it clear what we are talking about. This article describes a three-year-old child who, when accompanying his mother to the grocery store would have meltdowns. His mother was quoted as saying “he would literally bite me throughout the grocery store”. An occupational therapist determined that he had SPD: “a condition in which the body and brain have difficulty processing and responding to sensory stimuli in the environment”. The article goes on to say that “some people with SPD are hypersensitive to loud noises or different textured foods. Others may be agitated by the touch of a clothing tag”. The Director of Occupational Therapy (DOT) research at Cincinnati Children’s Hospital Medical Center was reported as saying
“occupational therapists treat dozens of SPD patients every week. It can affect just one sense, such as hearing, touch or taste, or multiple senses. Sensory processing problems can also affect the body’s vestibular system, creating difficulties with balance, or the proprioceptive system, leading to problems with clumsiness and body positioning”.
The DOT “has worked with some children with SPD who are academically gifted and don’t have autism or ADHD. It is clear from the article that the method of treatment, entitled “sensory integration”, looks upon SPD as abnormal psychological behavior. This is in spite of the fact that a professor of radiology and bioengineering at University of California, San Francisco stated that studies showed that children with SPD had less developed white matter mostly in the back of their brain, compared with typically developing children. This posterior region of the brain is where a lot of sensory processing takes place. This is a major clue as we shall see shortly.
Beyond the Bad Parenting Theory of Sensory Processing Disorder
Now I ask you dear reader, is it common sense to claim that this kind of disorder in 5% to 16% of our children is purely psychological from bad parenting, acceptably normal in a young child, or caused by genetic changes? Since the Wall Street Journal article claims that “adults can have SPD”, it is clearly not confined to children. To believe that any of these facts, or all of them together, can result in so much willful behavioral deviation is a reduction to absurdity. It is absolutely certain that Mother Nature never makes that kind of genetically determined mistake in so many individuals.
The article in the Wall Street Journal reports that “a common treatment at Cincinnati Children’s is called sensory integration, involving three sessions a week for about six weeks”. The founder of the STAR Institute for sensory processing disorder in Denver involves an intensive treatment program of some 31-hour sessions nearly every day for several weeks. The cost is about $175 per session.
When I was a consultant pediatrician at Cleveland Clinic Foundation, I saw many children who were referred because of “emotional problems”. The accepted cause at that time (and still is by many pediatricians) was lack of good parenting. In discussions with parents, I found that bad parenting was rare, but lousy diet was common, particularly because of the enormous overload of sugar, often started in infancy. In fact, sugar was used as an inducement to good behavior, not recognizing the fact that the sugar was the cause of the bad behavior in the first place. By doing a blood test on these children I repeatedly found evidence of thiamine deficiency. To me, the extension of the absurdity is that there is no mention at all in this article about the role of nutrition. I have posted a number of articles on this website concerning vitamins, particularly vitamin B1 (thiamine). I have pointed out many times that overloading the diet with empty calories, particularly from sugar, automatically induces thiamine deficiency relative to the excessive calories. The scientific evidence for this has been known since 1936. Any attempt to depict thiamine deficiency by measuring its blood level in a person eating “empty calories” will be doomed to failure. The concentration of thiamine in the blood is only normal in relation to a normal calorie content of the diet. It is the calorie/thiamine ratio that counts.
Sugar, Thiamine and SPD
By pointing out to the parents that they had to get rid of the sugar and providing the child with a supplement of thiamine and magnesium, all the symptoms of “psychological misbehavior”, no matter what pretty name was given to it, quickly resolved. For literally a few dollars and cents, this form of treatment is overwhelmingly simple and effective. The “posterior region of the brain where a lot of sensory processing takes place” is peculiarly sensitive to thiamine deficiency. It will affect balance and in its extreme form, can affect brainstem mechanisms where the control of heart rate and breathing is automatically conducted. This is why an excess of sugar is incredibly dangerous, not because the sugar is a poison in its own right, but because of the secondary effect on energy metabolism in that part of the brain that is essential to life itself.
What seems to be poorly understood is that thiamine deficiency produces the same effect in the brain as lack of oxygen and sensory perception becomes exaggerated. Pain is felt more intensely and may give rise to a phenomenon known as “hyperalgesia”(acute pain perception). Sound and light may be so much more perceived that the sufferer puts hands over his ears or closes his eyes, because the perception is offensive. Touch is grossly exaggerated and may even give rise to screaming by the child when being physically examined by a physician. Because of this poor understanding, the behavior of the child is regarded as “psychological”. Under such circumstances a mild injury to an ankle may give rise to severe pain in the leg. It used to be known as “acute sympathetic dystrophy”. The name has been changed to “acute regional pain syndrome” or “complex regional pain syndrome“. Let it be clearly understood that no matter what kind of injury, obvious inflammatory reaction or source of discomfort occurs in the body, the pain is perceived by the brain. If the mechanism of sensory perception is exaggerated, the pain will be more intense.
Conclusion
It is becoming abundantly clear that a diagnosis of sensory integration, ADD, ADHD, OCD and many other diagnostic refinements are not separate diseases at all. Like variations on a symphonic theme in music, the biochemical changes in the brain are responsible for creating the symptomatic expressions on a completely variable basis. It also explains in practical terms why many of the so-called SPD children in the Wall Street Journal article “were unusually gifted”. Like different models of cars with different horsepower, surely the more intelligent brain requires efficient energy metabolism to meet its “gifted” requirements. For those interested in further details of this concept, turn to the post on “Eosinophilic Esophagitis” on this website. There you will find that the unfortunate patient described with this disease was misdiagnosed for many years as psychosomatic. I will go further than this and say that if the symptoms that are commonly represented by changes in brain processing are neglected, and the malnutrition continues, we can expect damaging changes to take place. I would expect this to lead to a whole series of diseases that also go by different diagnostic nomenclatures, Parkinson’s disease, Alzheimer disease and various forms of dementia that represent the end point damage that has accrued over years. Are we collectively insane?
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Hi,
Has anyone tried thiamine supplementation and found success with autistic behaviour and sensory processing issues? I am curious to hear how much does of thiamine is needed for 4 yr old children and where can we buy it?
Hi Dr. Lonsdale,
I have to echo everyone else’s comment about what an amazing person you are!!
My question is if you have any direct experience with misophonia? People that suffer from this condition have an increase in activation between the auditory pathways and autonomic nervous system, so I wonder if thiamine would help since it helps for so many other conditions affecting the ANS…..It is not exactly SPD but very similar!!
Dr. Lonsdale,
I just wanted to say thank you so much for writing this article, it has truly been life changing for my 6 year old son! We adopted him and at birth he tested positive for methamphetamine, his birth mom being a heavy user. From the very beginning he was allergic to dairy and had severe reflux as an infant and had failure to thrive at one point early on. It’s kind of been one thing after another ever since. Severely tongue and lip tied, to the point of almost choking to death until having surgery and occupational therapy, constipation since birth, hyperactivity, very oppositional behavior, sensory processing disorder (hearing and touch most affected), and overall bad moods for no reason. Despite all this, he is truly gifted even teaching himself multiplication at age 4 and reading at age 3. We noticed early in he had a problem with sugar and really try to limit it and I had already been giving him a probiotic and magnesium, but after reading your article I added a b complex and finally found a b1 melt that dissolves on his tongue until he can swallow pills. We only started 6 weeks ago and have only built up to 15 mg on the b1, but in the words of my husband “It’s a miracle he’s a different kid!”. The first thing we noticed is mood has been greatly improved, then he started to be able to feel hot and cold more normally, he also started asking us to hold his hand for the first time in his life and just noticed this week he is now making eye contact with us, no more hyperactivity and defiant behavior. We took him for an outing to the zoo and trampoline park this week and I can honestly say I almost cried being able to enjoy him and feeling like a “normal” parent for the first time in his life. My mom said it’s so nice to see him happy now instead of being in a bad mood and not knowing why. I have spent years researching and trying different things to help him and stumbling upon this article was the best thing that ever happened to us! God bless you and your life’s work, you are a true healer and I just wanted you to know how much we appreciate you and the knowledge you are still sharing with the world!
P.S. My mom and I also started the regime and this is the first time in my life I have been able to get deep breaths whenever I want to. (I’ve had activity induced asthma since childhood.)
Hi HH,
I’d love to know which dissolvable B1 you found for your child, I want to try the same as my child presents with a lot of what you’re describing. You’re giving me hope:-) We’ve also been trying everything over the years.. everything except thiamine. So happy for your amazing success story!!
Dr. Lonsdale,
I am so grateful I found your article. My Grandson, who turned one on the onset of the covid , was a great eater and had no issues. Being the only child during that whole year and a half, with no park, friends, and worldwide shutdown, he missed over a year and a half of typical learning across the board. During that time, he got strep twice and took antibiotics. He now has issues with sound. Having a brother now, he cries/screams when brother cries, cries at noises from gardeners, sirens etc. And is speaking ,but repetitive words, etc. Doctors just say he is behind from covid, so did nothing about it. I am going to try this thiamine. Because his diet, although he used to eat quinoa, avocados, blackberries, you name it. Now , he wont, and in fact will make a gagging motion when he see’s certain food? So he will only eat french toast, cookies ,or quesadilla. Im going to try the thiamine. Prayers it works. And for so many docs chocking up these issues to covid, you are a godsend for so many seeking help for those who have these issues. Bless you. Any tips would be greatly appreciated.
Yes, go slow to begin. Then gradually increase dose until it is ideal. There is no toxicity
Dr Lonsdale and Dr Marrs
I am 31 yrs old male. I have had following issues since childhood:
Allergies/Asthma
Cold and sweaty palms/feet
Adrenal issues, otherwise fit guy but never lose fat around waist and sleep onset issues from late teens till now.
Often fatigued. Muscle weakness and cramps.
Periodic sound hypersensitivity from sharp sounds
Had periods of cock-eyedness but got better on it own
And importantly, on top of this a period of intense stress in 20s gave me OCD by age 24-25.
Do you believe a lot of this can be explained by Thiamine deficiency? And i will likely benefit by megadosing TTFD?
I believe i have a possible undermethylation issue which excarberated led to OCD, or this Undermethylation is due to lopsidedness caused by Thiamine deficiency?
Thiamine stimulates energy production (the engine). Transmethylation consumes it (the transmission). They have to balance.
Your reply is much appreciated. I will tell my brother to continue with the 100mg. Interesting that my nephew was improving steadily on the 100mg till he got Covid and that obviously cost a lot of energy to fight off. Your articles here on Covid are very interesting. A nutritionist advised my brother to give him Methylcobalamin sublingually and it made everything 10 times worse with dreadful hyperactivity and meltdowns. I read with interest how you describe how high B12 in blood ( the young boy with swollen glands) could be related to low Thiamin in the brain ( if I understood that correctly). Thank you Dr Lonsdale for dedicating your life and retirement to helping people. As Einstein said ‘Only a life lived for others is a life worthwhile’. You dedication is much appreciated. God bless you
Hi Dr. Lonsdale,
Thank you so much for this article and your dedication.
My son exhibits the behaviors that you describe for SPD and this gives us hope. They ruled out autism, and we are starting occupational therapy soon. However, he is 2 years and half, weighs 30.4 lbs pounds and measures 37 in (BMI: 15.6). Could you please specify what would be an appropriate dosage of B1 and magnesium considering this?
Dear Dr Lonsdale,
Your incredible book is one of which you should be so proud. I have given it to our family doctor. You have undoubtedly helped thousands of long suffering people. My nephew, 7, has Asd and sensory processing problems. I advised my brother to try Thiamin Hcl with Magnesium and already my nephew has lost the aversion to fabric ( he would only wear one particular jumper). He is still undersensitive to movement i.e. literally never stops jumping and is obsessed with things being in a certain order. He is also very stressed at times and having tantrums. He only has a few words. My brother can’t get him to take the Ttfd tablets and he can taste them if they are crushed in food. The Thiamin Hcl is, on the other hand, easy to dissolve in his drinks. My question today, if I may, is how much more Thiamine Hcl should he get in the hope of helping his other issues? He takes 100 mg Thiamin Hcl and 75 mg Magnesium.
He is 7 years old, 44 pounds and his diet is sugar free. Sincere thanks for giving hope to people like us. God bless you always.
I think that the dose is OK. You need to be patient but you can easily double the dose because there is no toxicity. He didn’t get sick overnight. It started in your pregnancy.
Thank you once again Dr Lonsdale. I look forward to reading your book and will recommend it to others ( doctors included). I don’t know how you find the time to answer so many questions but you give hope to countless people and their families. I just wish you could be cloned and we’d have at least one of you in every country- the world would be better for it. Thanks again and best wishes from Ireland
Dear Dr Lonsdale,
You already answered a question from me this week and I am very grateful for that. I have ordered your book and am looking forward to reading it. May I ask another question relating to your article on sensory processing? My 5 year old nephew fits exactly into that picture. He is a late -talker which runs in his Dad’s family. ( His sister, my niece, only spoke in full sentences at age 6 and is now top of her class in English reading and comprehension). He gets frustrated at times and dislikes certain types of clothing. His diet is sugar-free. You write that you helped lots of these children with Thiamine and Magnesium. Could you recommend a dose and type of Thiamine for him? I really must commend you on helping people for free online whilst other therapists charge so much for “sensory sessions”. I think the world has gone mad. You are a shining light and I thank God for you and your work. Best wishes always
Well, thiamine does nothing except stimulate the synthesis of energy. My research and clinical experience have suggested that all disease is due to energy loss in brain. So the derivative of thiamine known as thiamine tetrahydrofurfuryl disulfide (TTFD) appears to be the elixir of life and may be capable of treating anything. Lipothiamine and Allithiamine are both TTFD sold by Cardiovascular Research in California
Hi We have a 6 yr old nonverbal boy but makes a lot of noise. He is toilet trained and his balance is amazing , Tho always climbing. Used t cover his ears when younger not now tho. But sensory issues r taking clothes off in the house and no shoes in garden.whereas his diet was good when younger he is now very fussy. I’ve read how effective magnesium threonate is for sensory issues and brain function. Can u recommend anything for the speech please . Anything else we could try for him. I’ve also been looking at ANRC essential vitamins plus by prof Adams . There’s thiamin in there too. Thankyou
Hi Dr. Lonsdale, I just saw this article today. We believe our son has SPD. We don’t eat a lot of sugar, but perhaps there are genetic susceptibilities, as my wife has misophonia and I have chronic GERD. And my son does eat a pretty high (100% whole grain) carb diet. But my question is: we are interested in trying to supplement some thiamine, but I don’t know what to get? Seems like most thiamine supplements available are 100mg, which seems like way too much. And most children’s multivitamin gummies that have thiamine have a bunch of sugar in them. Where does one get a smaller dose of thiamine supplement, preferably one that can be mixed with food or drink?
No, you have to use thiamine in large doses as a drug. It is not simple vitamin replacement so go ahead with the 100 mg and i might still be insufficient
After enduring loud motorcycle noise as I ate along a roadside cafe, then loud overhead music at my produce store, as I arrived to shop at Trader Joe’s I found myself struggling to mentally focus on my shopping. I knew then the culpret was the excessive noise over the previous hour. My SPD tolerance & health status were actually better today than most days, where just a few minutes of loud noise would do me in. As I arrived home, I thought to again Google sensory processing disorder (perhaps for the hundredth time in recent years). I’ve lived with it for 20 plus years as a result of hydrocephalus, and have undergone 12 shunt revisions. I became a neuroscientist out of these challenges 20 yrs ago, where in 2002 I conducted my own sensory study. I became involved in drum circles where I’ve developed some of my own therapeutic methods. I write some pretty interesting blogs on my work & research. Your blog caught my attention today in that you dared to call out one of the leading stories. And many of the Google images so called experts I read today were equally misinformed. Sadly SPD has become politicized in the wrong way with few effective treatments, and essentially no protections. I bet less than 1 in 10 knows what SPD is, and what accommodations are needed. Yet 9 in 10 would likely know what a transgender bathroom is. This lack of public awareness needs to be changed. Then we’ll be better prepared to address its science. Thank you for your efforts.