Help at Last: We Learned What Was Causing Tourettes and OCD in our Child
Our family lives in a small town in Kentucky. I guess you could say we’re pretty typical. A hard-working dad, a sweet daughter, and me—a mom willing to do anything in her power to help her child.
Our girl Bethany was a sickly baby. She had allergies, with tubes put in her ears at age one. After we finished one antibiotic we’d have to try another, and she had upper respiratory infections almost constantly.
Bethany received a diagnosis of Tourette syndrome when she was five, but symptoms had started a couple of years before. We went to our local doctors for answers:
- Why was our daughter clearing her throat over and over?
- Why was she jerking her head and body?
- Why had she started “organizing” things?
- Why was she having temper tantrums if I wanted her to touch something she didn’t want to touch, or when things weren’t orderly enough for her?
- Why did she have so many stomachaches?
Getting a diagnosis of Tourette’s, ADHD and OCD, but no treatment for symptoms
We couldn’t find doctors with with helpful answers. In fact, one suggested she was just trying to get attention. We did our best to cope but felt so helpless. Finally we had a referral to a medical center at Vanderbilt in Nashville. There, the diagnosis of Tourette syndrome was made along with a diagnosis of ADHD and mild obsessive compulsive disorder (OCD).
The doctor told us that the medications had so many side-effects, that it would be better not to treat her with them at this point. No other suggestions were given on how we could help her.
When first grade came, the tics got much worse. Children starting teasing and mimicking her, and the teacher called to tell me her tics had become a distraction in the classroom. The school staff didn’t understand her condition and this added to Bethany’s stress and heartache. Tics flared even more.
I phoned the doctor at Vanderbilt and asked what we should do now. He said all he could offer was to try her on different medications and see if they worked, because there was no way to know which one(s) might help. Having read about the side-effects of these drugs, I felt I had to say no rather than experiment with my little girl’s health. She was so young for those strong drugs. I was determined that these medications would be a last resort.
You can read about the side-effects of one of the drugs being considered, Orap, here. What kind of an option is that—what’s a mom to do?
By this time I had ordered material from the Tourette Syndrome Association to learn everything I could. I now realized other children had similar problems, but it didn’t help me know what I could do to actually help her symptoms.
For a long time I would put Bethany to bed at night and cry myself to sleep.
Finding a new direction through late night searches on the Internet
I often prayed in desperation, asking God to help her and guide me in the right direction. It was 2 a.m. one night when I was up searching for help on the computer. I came across information on Dr. Albert Robbins (now retired) in south Florida. He was an environmental physician who collaborated with Sheila Rogers and the Association for Comprehensive NeuroTherapy (ACN/Latitudes). Something clicked as I read about allergies and Tourette syndrome, and I thought this could be the answer for Bethany. I remember waking my husband up and telling him excitedly that I thought God was going to help us. Mike promptly rolled over and went back to sleep, but this was the start of her amazing recovery.
By now, Bethany was 9. The first thing I did was call Dr. Robbins’ office for a phone consultation. He suggested we do some lab work before visiting him. Her local doctor was not convinced it would help, but cooperated with ordering the tests. When the results came back, Dr. Robbins told us they showed Bethany had severe food allergies and some nutritional deficiencies. He started her on a nutritional plan. In the meantime, she had her tonsils and adenoids removed, which was of some help to her.
It was a few months until we could get to Dr. Robbins. Over spring break we headed to Florida, and Bethany received intradermal skin testing. It took almost three days. A very diluted amount of an allergen would be injected under her skin, the bump it made was measured, and after 10 minutes it would be measured again to see if it had increased or decreased in size. This was repeated with different dilutions until the “just right” solution was found for each allergen. It was no fun for Bethany, but she was a trooper. She was motivated to get through it because, she said, she was “so tired of feeling sick and being made fun of.”
It turned out she was very allergic, not only to foods but to dust, pollens, and molds, and overly sensitive to chemicals. I watched the testing carefully, firsthand.
Starting treatment with allergy therapy and lifestyle changes
We left to go back to Kentucky with vials for allergy therapy and with new hope. I felt a burden had been lifted. In fact, I get emotional when I re-live that day because I’m so very grateful. Only God knows what we went throughs.
We were given instructions by Dr. Robbins on how to make our home less allergenic and non-toxic. It felt wonderful to be able to actually do something to help her! We cleaned out her room and removed the stuffed animals that had gathered dust. We changed washing powders to unscented and gentle products. No more commercial air fresheners or scented candles! No standard kitchen or bathroom cleansers. We went all natural.
Every few days Bethany received allergy therapy injections that are different from traditional allergy shots. Her dad gave her the injections. Tics and her other symptoms quickly began improving.
We started rotating our food groups, because we had learned from Dr. Robbins that Bethany was highly allergic to the foods she loved most: milk, eggs, chicken (especially!), and corn. We discovered certain foods were causing the stomachaches, and when she ate those foods her tics would get worse. For example, once we started observing reactions, we saw that macaroni and cheese would really set her off! It all started to make sense to us.
For us it was clear that Bethany’s tics didn’t just come and go, or “wax and wane,” out of the blue. Something was making them happen, and to a great extent we could control it.
My daughter also has environmental allergies that include chemical sensitivities to smoke and perfumes. I always wondered why she would feel sick when around any amount of smoke—she would get headaches and complain of nausea. In department stores where there was perfume or hair spray, she would hold her nose, telling me it “hurt” to smell those things. Now I understood, and we made sure to avoid these exposures.
Enjoying her life for the first time!
Today Bethany is happier than she has ever been. She rarely needs to see a local doctor, maybe once a year she gets a cold. During the seasonal changes she may get a little congested, so we started a vaporizer at night and she’s been fine. She takes over-the-counter allergy medication and vitamins that help her.
We changed schools to the county next to us, to get away from the kids who were so cruel and the teachers who never understood. Bethany has made a lot of new friends, makes straight As, and loves to drag race, like her dad. She started karate and plays basketball.
I remember that during the first year of her successful allergy therapy, sometimes I would just stop what I was doing and pause to listen—listen to her laughter, and marvel at what a beautiful sound that was.
We were eventually able to reduce the allergy therapy, but we continue with her diet efforts, vitamins, and keeping our home a safe-zone. Bethany occasionally has a flare up with something she may eat. We were told that for some people, using Alka Seltzer Gold could help reduce food reactions that are happening, so she takes that when she’s gone off her diet and it takes care of her symptoms. She occasionally has tics and a few mild signs of OCD, but our nightmare is behind us, thank God.
There are others in our small community who have tics. I tell their families about what we learned with Dr. Robbins and about Sheila Rogers’ book, Natural Treatments for Tics and Tourettes. Then I leave it up to them to decide what they want to do.
My hope is that others will learn of environmental medicine and understand that what we eat, breathe, and come in contact with affects us and can affect our nervous system.
Update by Mom in 2014: The was written when Bethany is was 15. She will be 18 in May and is doing very well! She has always loved drag racing and recently won first place in the American Drag Racing League for her division. Here’s her championship photo!
What does the allergy therapy consist of?
Dr.Robbins mostly used serial end point titration to determine what went into Bethany’s allergy vials. We also had sublingual drops for allergy symptoms.
Fortunately our insurance covered most of it. Of course, part of the therapy included avoiding things she was allergic or sensitive to. We worked very hard on that. I hope this helps.
Did you travel to Florida to see an environmental allergist? Our daughter is 8 and has had her tics for over 2 years now. Initially they came on so strong we thought she was having seizures. We have had an MRI, catscan, ruled out PANDAS and had allergy testing done. We have seen a homeopathic and a chiropractor and still no improvement. She is allergic to gluten, wheat, dairy and casein. We follow a very strict diet as a family to be supportive. It has been a very long year, just waiting to see some improvements but she still has the tics.. her tics do the so called waxing and waning and we are never free from this. Our 4 year old son has also started to develop some tics this year. An environmental allergist is our next step.