Written by Robyn Charron (bio below)
At 6 months old, after 3 months of constantly pushing our pediatrician for answers as to why our infant son, Rory was covered in eczema and contact rashes, a food allergy blood test revealed that he had a deadly peanut allergy. Ten months later a skin test showed a dozen more allergies, several of them very serious and possibly anaphylactic. We began carrying an EpiPen Jr. everywhere we went and made sure to tell friends, family, waiters and preschool staff about his peanut and tree nut allergies. It wasn’t until Rory was 3 ½ years old that I slipped up— I allowed him to eat a cookie without reading the ingredients on the box – not only did the cookie contain a tree nut, but it was manufactured on shared equipment with another product containing peanuts. Within 40 minutes my son was in full-blown anaphylaxis: coughing, gagging, swollen eyes and hives. We were in a panic, but the EpiPen Jr. saved his life. Rory was taken to the ER by ambulance and discharged in the morning. 17 hours after the first episode, he relapsed when the epinephrine wore off. That time the allergy symptoms were different: confusion, euphoria, speaking nonsense, swollen tongue. His school director recognized the signs and was quick to use epinephrine again and he was admitted overnight to the Children’s Hospital.
Fast forward 8 months, when the post-traumatic stress syndrome was finally wearing off, Rory came home with a red blotchy face multiple times in a two-week period. One day, the director called and said his face was very red around the eyes, but more worrisome was that he seemed to be in a downward spiral of some kind. He was suddenly very tired, preferring to sit than stand. Were these allergy symptoms? After the director called, I was on my way to get him when I called her back to tell her to use the EpiPen because he was likely having an allergic reaction to food. By the time I got her on the phone she had already saved his life, again, and an ambulance was on its way. He’d stopped speaking to her and his breathing was down to 10 respirations per minute. It turns out that somehow peanut butter had contaminated some of the toys Rory had been playing with at his peanut-free school. He then rubbed his eyes and it was enough to spark another serious reaction.
The Search for Answers
That last episode launched me into an offensive mode—I could no longer only live defensively and allow these allergic reactions to food occur. I began looking for known causes of allergies, hoping to find a peanut allergy cure and a random thought led me to Traditional Chinese Medicine. I’d been on an autism site reading about figwort tincture as an alternative to tonsillectomy when I popped into a Facebook group with thousands of parents of kids with food allergies and posted the question: Does anyone know if there is an herbal treatment for peanut allergies? Within an hour someone guided me to the Facebook group for patients of Dr. Xiu-Min Li, an integrative pediatric allergist from China, and our journey to healing Rory began.
Dr. Li theorized that a 2,000 year-old Traditional Chinese Medicine formula for parasitic infection, combined with a specific type of mushroom, might one day be the answer to the peanut allergy. She has been publishing research on her success with the formula in blocking anaphylactic reactions in mice for the past 14 years, and a newer, more streamlined version of the formula is currently in human clinical trials.
The Journey to Healing
In the late winter of 2014 I contacted Dr. Li’s office at Mount Sinai and scheduled a June 2014 appointment for Rory, giving myself plenty of time to back out if I changed my mind. I read everything I could get my hands on about her and continued to talk to the parents in the Facebook group almost daily. Finally, in May, I committed to the appointment, and bought our flights and hotel to see Dr. Li in New York City at her private TCM clinic in Midtown Manhattan. I scheduled a blood draw to test Rory’s kidney and liver function, specific IgE antibodies for his food allergies, and an overall IgE score. Rory was at 45 on an Immunocap test for peanut, with a total IgE of 495. For those who don’t know, a normal peanut test should be under 0.1 and a normal IgE is under 30. I sent the records to Dr. Li’s office a few days before we arrived.
When we met in person she had me go through the painful details of each episode of anaphylaxis, despite how teary it made me, writing it all down. Although Rory had dealt with extreme eczema since the age of 4 months old, his skin had mostly healed by the time he turned 4 years old, which was 9 months before his appointment. I have no doubt that a large part of his healing had to do with moving out of the pollen-soaked air of Texas the year prior. Dr. Li was impressed with my routine of giving Rory vitamin D3 drops, probiotics, and adding vitamin C powder to his bath water to neutralize the chlorine. “Ah,” she said. “You are already good with the alternative medicine.”
Dr. Li looked at Rory’s tonsils, a hemangioma on his stomach, and the remaining eczema on his hands and wrists. She wrote down a custom treatment plan for Rory consisting of tiny herbal pills reserved for her smallest patients, two body creams, a digestive tea, and herbs for his nightly bath. Then she performed a 5-minute acupressure session that he giggled all the way through.
Many parents want to know how much Dr. Li’s program costs, but the answer is that it depends. Our treatment plan is probably on the low-end the spectrum at less than $5.50 per day. If a child has eczema or other health issues they might undergo a more intense program.
Much of what it means to be a patient of Dr. Li’s private practice is done on the honor system. Not only are you expected to administer all of her herbs and creams at home, but you must book your own phone calls to speak with her each month, you are expected to appear in person with your child every six months, and you are trusted to pay your bill when your supplies arrive with each order. Her regimen is not for parents who need constant reminders to comply because you will get none of that from her office. It is all on you.
Have I been the perfect caretaker for my child on Dr. Li’s program? No, I have not. I have failed to give Rory his morning pills too many days to count, though I do consistently remember his evening dose. Likewise, I forget to apply his skin cream in the mornings, but typically send him to bed slathered in it. Some days he insists on a shower so he doesn’t get an herbal bath 100% of the time. I was good about the herbal tea in the beginning, but was gently reprimanded by Dr. Li for falling off the tea wagon, as she thinks it is important for healing Rory’s digestive tract and putting an end to his teeth grinding.
Aside from walking out the door in the morning with a slight blue tinge to his skin, Rory has experienced no side effects from Dr. Li’s program. What we have seen is that his remaining eczema cleared within days of beginning the program and his skin is baby soft once again. We have not had any trips to the ER for an allergic reaction to food or reasons to use epinephrine in our time with her. We also feel that he has begun to weather typical illness better, when in the past a virus might land him in the ER with the croup or at the very least he’d have needed a midnight session with his nebulizer.
In the last days of November our local allergist ordered a new food allergy blood test for Rory’s Christmas appointment with Dr. Li. The office called to share the news before sending his records by email—Rory’s peanut score fell by 9 points and his overall IgE came down a whopping 252 points after only five months of TCM. I was overjoyed and immediately notified everyone I have ever met in my entire life. Although IgE doesn’t tell the whole story of an allergy—there is IgG as well as other factors— right now IgE is as good of a test as we’ve got. We are full of hope.
In our hearts we know that total avoidance of peanuts while remaining in Dr. Li’s care is going to be the cure for our son, but Dr. Li will not use the word “cure” right now. Her program is between two and four years in length, depending on the patient, and I expect that we will be with her for the full four years. So right now it’s just too early to think about a peanut allergy cure. But regardless, we feel starting the treatment plan with Dr. Li was the best decision we’ve ever made.
Written by Robyn Charron.
Prior to attending law school, Robyn earned a Bachelor of Science in Biology and worked for two years in laboratories researching genetic disease. When her first child suffered an injury from vaccines at two months old, her conventional parenting went out the window, and she ushered in a world of organic food, supplements, and non-toxic living. She currently lives in Denver where she advocates for allergy awareness and parents’ rights to make medical decisions for their children without government intervention.
For more resources about Dr. Li’s research, please visit these links: