A LETTER FROM JESSICA’S MOM
Even as a former special education teacher for ten years, I was not prepared for what I witnessed happen to my daughter. I have since learned so much about gut health and how there is a strong gut/brain connection. In addition, dietary changes and supplements are key components in affecting behavior, the nervous system, and general cognitive functioning.
Although Jessica was shy and anxious in new situations and when meeting new people, she was otherwise a very happy, calm and well-liked child. She thrived in preschool, made many friends and developed her love for the arts, fashion, and dance. Around the age of 3, after a move from a relatively new condo to a newly renovated old house, we noticed that Jessica started coughing. It was for the most part mild, but lasted for a long time, about two years. During those two years we brought her to a few pediatricians several times, but they kept dismissing the cough as a possible allergy or dryness from the renovated house that would soon go away. Strep tests were done at each visit and turned up negative. Various mold, air quality, and asbestos testing were also done on our house but no red flags were found.
The summer before beginning kindergarten (Jessica was just about 5 years old), various motor tics appeared. Jessica displayed shoulder-shrugging and would lift one of her legs. We were highly concerned and brought her to a psychologist who specializes in Tourette’s.
The psychologist told us that Jessica had some tics and to just ignore them and hope she would grow out of them. Medication was not recommended due to Jessica’s young age and mild symptoms. We consulted two other neurologists who said pretty much the same thing. So, we did what the “experts” advised us to do and tried to ignore them—but this was the worst advice.
We feel that if we had addressed the tics earlier, they would not have spread to other parts of her body. Because, in the next several months, the tics steadily increased and changed. We saw a lot more coughing and shoulder shrugging, and although the leg lifts stopped, Jessica started showing frequent eye blinking, head-nodding and pauses as she walked. Obsessive compulsive tendencies such as counting and organizing things were also observed although these died down on their own with minimal interventions (we simply told her it was a waste of time to count things and explained that we only count during math class etc.).
Tics every few seconds
We were very concerned, as the tics had now become very frequent—about every few seconds. Jessica was also feeling the brunt of it, crying and asking us why she couldn’t stop blinking, and concerned that her teacher and friends would ask her to stop (they never did) but she knew she couldn’t. It was extremely heartbreaking as parents, to feel helpless while our daughter suffered.
Jessica had been doing well in school, and the tics apparently were not impacting her schoolwork. However, we continued to be devastated by what we saw and our family members, who didn’t really notice the tics too much before, also became concerned. We then decided that we could not just sit back and wait for our daughter to outgrow this condition, so we tried reaching out to psychiatrists to consider medication. But no one at their offices answered our calls…we realize now that this was a blessing in disguise!
We started researching natural remedies and stumbled upon Sheila Roger DeMare’s book and Latitudes.org. We read the book in three days, scoured the website in two weeks and implemented immediate changes. We switched to a gluten, dairy, corn, soy, and preservative and artificial coloring free diet. About an 80% improvement was noted within three days. We knew we were onto something. We started Jessica on a few magnesium supplements recommended by some members on Latitudes.org, which included: Natural Vitality’s CALM drink, magnesium lotion at night and a magnesium threonate supplement. We saw a definite additional improvement with these supplements; however, we later learned with the help of a nutritionist, that the CALM drink and magnesium threonate we were using contained flavoring and were high in salicylates, so we eventually stopped giving them.
All household products (hand soap, laundry detergent, dish soap, toothpaste) were also changed to all natural products that were Feingold approved.
In the meantime, we sought the help of an environmental physician, Dr. Morton Teich, in New York City. He did food and environmental allergy testing and Jessica came out intolerant to bananas, casein and oatmeal and had elevated reactions to ragweed, certain trees and dust. Dr. Teich started our daughter on sublingual drops for the inhalant allergies and advised us to have her refrain from eating bananas, casein-containing foods, and oatmeal as well as incorporate his specifically designed yeast and allergy diet into our already restrictive diet. It was difficult but well worth the outcome.
The candida connection
In addition, we had suspected Jessica had an overgrowth of candida because she had experienced rectal itching, redness, and frequent stomachaches for two years, right around the time the coughing started. Although the pediatricians kept dismissing these symptoms as preschoolers not knowing how to wipe (we assumed she had a urinary tract infection), we were concerned because Jessica would cry and complain that her butt burned at times. There was also a strong odor with her bowel movements. Dr. Teich immediately started her on Nystatin oral suspension (this contains only stevia, sterile water and Nystatin powder; be aware that some liquid forms contain artificial coloring) and within three weeks, her tics improved to what I would estimate as 90% improved.
Meanwhile, we had stopped all other supplements when we started the Nystatin, so we were confident that the Nystatin and dietary changes were the key factors to her big improvement. Jessica got a little better every week and we eventually only saw tics when she read or watched TV.
In order to tackle the remaining 10%, Dr. Teich recommended that we also give Jessica Nystatin as a rectal suppository. His rationale was that the Nystatin oral suspension would not be able to “get to the bottom” of her system. With this supplement, we saw even more improvement.
We considered seeing an Irlen specialist to reduce visual sensitivity, as the tics now occurred mainly when she read and watched TV; however, since our daughter was making so much progress with dietary changes and Nystatin, we decided to wait on Irlen and attempt the Failsafe diet, derived from Australia. We reached out to a Failsafe nutritionist in Australia, and she recommended a few more dietary changes to reduce exposure to amines, glutamates and salicylates. In addition, she recommended reintroducing quality probiotics (without additives and artificial flavoring) and MagneZinc supplements for five months.
It’s been only about one week since we started these new supplements, three months since we began the dietary changes, and two months since we started Nystatin and Jessica is about 95% better! We are hopeful that by continuing to treat her candida, avoiding toxins/scented products, and improving her gut health (there is a definite gut/brain connection), she will make a full recovery.
We know that Jessica’s improvement was not due to her growing out of it or the mysterious “waxing and waning” (term typically used to describe tic increase/decrease). One time she had a non-dairy product that caused an immediate reaction; I later learned it contained several off-diet items.
Eating certain fruits high in sugar or salicylates also led to the tics showing up, but only for a brief period of time (if it was at night, she was fine the next morning). I keep a detailed log to help me keep track.
The books that have been the most helpful for us include: Sheila Rogers DeMare’s Natural Treatment for Tics and Tourette’s, Dr. Semon’s Feast Without Yeast and Sue Dengate’s Fed Up: Understanding How Foods Affect Your Child and What You Can Do About It.
Sheila, you are truly an advocate for your child and for all children and adults who are suffering from tics. There is hope that one can eliminate and/or reduce tic symptoms drastically with the information that is shared on your website and in your book. I’m looking forward to reading your new book on tic triggers to see if there is anything we might have missed. Thank you so much for spreading this pivotal information.
According to Dr. Teich, “never trust what anyone tells you, always question it.” We are glad we did.
Editor: Name is withheld to protect Jessica’s identity.