Our Journey with PANS: Could this be a Possibility for You?

BY HOWIE’S MOM

Our journey with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) started on May 2, 2014. My healthy 9-year-old son, Howie, came home with a sudden head-jerking movement. I asked what was wrong and he said he didn’t know. I was obviously concerned and took him to his pediatrician. She informed me that this could be a tic that would go away with age, but she could refer me to a neurologist who could prescribe a drug to help. The pediatrician said if the symptoms continued for a year, he might be diagnosed with Tourette syndrome.

Obviously, this was upsetting news and I stayed in fear for the next week, wanting to hide in bed under the covers. I did a lot of thinking and praying, and realized that if I wanted to help Howie, I needed to get out of my fear and dig deep.

I realized that my instincts were telling me that the approach of the doctor was not right; there must be something that my son’s body was trying to communicate. Something was surely wrong inside his body, and giving him a drug would not be the answer to fix the root of the problem. In fact, my online research later showed me that typical drugs for tics could indeed make his problem worse!

I took him to a functional medicine doctor who began by with testing for various underlying problems including food allergies, genetic testing through the company 23 and Me, environmental allergies, gut function, neurotransmitter imbalances, Lyme disease, vitamin deficiencies, and underlying infections including Strep Anti-DNAaseB and ASO titres (antistreptolysin O).

After reviewing the results, we determined that he had a few vitamin deficiencies, a dairy intolerance, dust mite allergies, a gene mutation called MTHFR C677T, as well as high strep titres (805 for strep ASO; normal is 0-200).

We started vitamin supplements and eliminated dairy (and gluten for good measure) and waited . . .

At first, the neck tic worsened to a point where he was repeatedly jerking his head, six times in a row. He tested positive for strep throat via a throat swab twice during that time. An antibiotic was prescribed for 10 days. Things started improving with the head tic, but a few other tics emerged.

Several months went by and then I dove into Sheila Roger’s book, Natural Treatments for Tics and Tourette’s: A Patient and Family Guide. I started making some of the recommended changes around the house for his allergies including eliminating toxic cleaning supplies. I purchased an excellent air purifier, continued with vitamin supplements, and made dietary changes.

The head tic continued but I realized things could take time. For many health conditions it takes time for the body to reach a point where the healing taking place inside shows up on the outside. I tried to keep my own anxiety level about the situation under control, which wasn’t easy. I tried to live life as normally as possible.

I should point out that Howie did not show signs of an abrupt onset of obsessive compulsive disorder (OCD), but looking back he had some subtle behavior changes including a desire to stay home and isolate, some motor hyperactivity, and increased emotional lability (mood swings). It’s unclear to me how much of this was due to him having to deal with his tic, or was part of his neurological condition.

HOWIE IS DIAGNOSED WITH PANS

During this time, my best friend of 25 years went to an event where she met a woman who had been on a journey of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection) with her daughter and had become an advocate and educator for a PANDAS organization. My friend remembered our conversation about my son’s strep numbers and suggested I speak with this woman. Wow, what luck that was! I hadn’t even heard of PANDAS!

After several conversations with this woman, I realized that I needed more information and help. I was referred to a PANDAS specialist who ordered additional blood work. After reviewing the test results, it was determined that in addition to high strep titres, my son also had high mycoplasma numbers. He was diagnosed with PANS.

This doctor prescribed amoxicillin (Augmentin) 875mg twice a day and suggested we remove the tonsils and adenoids. We began the antibiotic in February, 2015 (8 months ago). We also continued the vitamin supplements including a vitamin B complex (with methylcobalamin—not in the form of synthetic folic acid), vitamin C, omega-3 fatty acids, vitamin D, zinc, probiotics, activated charcoal/clay for detox, and an herbal formula to support immune function.

We continued with the dietary and environmental changes I had started previously, and I gained a spiritual outlet that guided me through. And we waited.

I must admit I questioned a diagnosis of PANDAS or PANS and wavered as to whether I was doing the right thing. It is scary to do something that most mainstream doctors don’t understand. Even the Tourette Syndrome Association seemed skeptical of PANS/PANDAS.

Within three months my son was getting better. We had been on this journey for one year. The head tic was gone and a few subtle, less noticeable tics had emerged. I almost questioned if I should get the tonsils removed because I felt things had improved so much. But, three months later (August 14, 2015) we went forward with the tonsillectomy. My understanding was that strep could hide out in the tonsils in areas where antibiotics can’t reach.

At that time, he went off the Augmentin 875 for 10 days before and 10 days after surgery. Instead he was prescribed the antibiotic clindamycin (300mg capsules) before and after surgery, as well as Rifampin Capsules 300mg afterwards. It was amazing to see that while on this combination of clindamycin and Rifampin the tics were 100% gone! Apparently, following surgery the bugs from the tonsils can get dumped into the system so this very strong course of antibiotics was prescribed. I continued to give my son 4 – 6 capsules daily of Custom Probiotics with 60 billion cfu’s of combination probiotic strains.

We are now into October 2015 and Howie is a happy, athletic, smart fifth grader. He has a few tics on occasion that I believe only I notice. We recently had more blood work done and have a followup scheduled to see where his numbers are now.

He is presently on augmentin 875mg once per day for prevention until further notice, and we will continue the nutritional supplements, environmental changes, and probiotics. I will follow-up with the PANDAS specialist in the next few weeks to see where we go from here.

My suggestions to anyone going through a similar situation would be:

• Fear can jeopardize your effectiveness in finding your solutions. Take care of your own health physically, emotionally, and spiritually so you will be more able to find the answers you need;
• Do your own research; don’t believe everything doctors tell you. Sort it out in your own head and do the best you can while you keep looking for answers;
• Be prepared to take a comprehensive approach rather than rely on a single solution;
• Be willing to consider that your child might have an underlying infection such as strep, mycoplamsa, or Lyme that is affecting immune function. Consider that you or your child might not have test results with high strep titres but could still have PANDAS. (This is confusing, I know);
• Consider the possibility that just because your child only has tics, that this doesn’t mean it is Tourette syndrome as it is classically defined in the medical literature. Although the PANDAS/PANS diagnosis is often boxed into the concept of “sudden onset of tics and OCD,” that doesn’t make it true! The actual definition includes “OCD and/or tics”. My son’s experience did not include OCD;
• Consider removal of the tonsils and adenoids when warranted— they could be the possible source of an identified infection;
• Listen to your own gut instincts. You are the parent! And be patient. Things like this take time, and the body needs time to heal.

Name is withheld at the family’s request