This is merely my account of our journey with it. Your journey may differ. PANDAS can appear in the form of a sudden unexplained behavior and it seems to come with strep, but can also come with Lyme or ticks. There are many families who have encountered this with children who have autism or other immune challenges.

BY LAURA GEORGE

I still remember that sound from that day several years ago. I heard it as I put my hand on the classroom doorknob that was next to my classroom. I never knew that such a simple sound would evoke a memory, a story and an unwanted journey to prayerfully overcome years later. It is this sound that causes one to hauntingly remember confusing experiences, an unwanted diagnosis and a deep desire to wish that with strength it could be overcome.

My daughter was your typical, average kid. She was incredibly bright and had an amazing ability to grab details where they were never expected to be seen; like the time she caught a street misspelled three different ways. Her memory was amazing and she was full of life always approaching it with zest. She was entering her tween years; doing well in school and teaching herself drawing skills at an advanced adult level.

This sound, "Thwack!", would forever change her and me. For days prior she had been aggressive, losing her memory and moodier than a child at age ten should be. I had been sharing with other parents my frustration at her behavior and myself for not being a better parent. I continued to twist the handle on the door hearing that sound again, followed by immense sobbing. "Laura, I just don't know what to do with your daughter! She is refusing to follow instructions, claiming that she doesn't understand, and has thrown both her shoes across the room! Doesn't she understand that this behavior is inappropriate at school?" I looked at my daughter who was sitting on the floor in a manner reminding me of a two-year-old's temper tantrum.

The following day I took her to our family doctor. I asked him what was I doing wrong. After all, this was my first child and I am a young widow. Of course, I'm going to make mistakes but I did not think I was doing that badly. After all, she was a child with good grades! She is my courteous, well-behaved child; I was still trying to tell myself. Our family had been going to this doctor for a long time, long enough for him to remember seeing my daughter in diapers. Maybe he could tell me what I was doing wrong and I could fix it. Instead, "Thwack!", he said something else. "Your daughter needs to be tested for strep!" I was surprised! She has no fever, sore throat, runny nose; nothing that suggests she is sick. The next thing I knew he came in with a cotton balled stick to take a throat sample. My daughter bucked, screamed, cried, and threw a fit to the point that the entire front lobby of his small office could hear her. After the test, she said, "Mom, why did they take that? My throat was fine!"

After a period of time, the doctor came back into the room. "Mrs. George, your daughter has strep. In fact, I went through my records and discovered that she was also diagnosed with it in my office exactly one year ago at the exact same appointment time." Thwack! I am now suddenly speechless, silent and very confused. He then follows with, "Your daughter I suspect has pandas. Not the animal, but instead P.A.N.D.A.S. which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus infection."

In the next 300 days, she was formally diagnosed with strep no less than eight times and on antibiotics each time. My education on the topic would be acquired from the medical community, along with online research and support groups (see below). The strep toxin goes go down to the kidney and comes back up residing in the brain and swelling it. Think of it as a headache to be manually placed inside the brain except that it can play in any room freely. This happy, cheerful child would mentally deteriorate rapidly in front of me and sometimes with frightening clarity. Her above average grades in school would drop so deeply that I often wondered if she would graduate to the next grade. Logic and the ability to focus, putting ideas together, turned into frustrating, scattered and incoherent concepts. Sitting down to work on homework was a strain and sleeping the day away was preferred.

Her once-simple life changed into one filled with doctor appointments. Some would simply dismiss her with a written prescription. One such event was a doctor who simply decided that even though her diagnosis was an autoimmune disorder messing with her brain, she obviously could not sit still and thus put her on a medication that had color dye in it—something we mentioned many times she was allergic to. The medication made her nightmarishly aggressive incoherent episodes even worse. At one point we said to the doctor, "How is it that a medication that is supposed to make one feel better, make both the patient and family so incredibly awful? We both want her off of it now!" He decided to decrease her medication. Yet our actual life preserver would come in the form of a school request that noted that children on that medication were not doing well. My child promptly took herself off the medication and a few days later her symptoms were reduced.

There were many different types of symptoms that she endured. Loss of appetite, picky eating, aggression, circular conversations that there was no ability to stop, memory loss, inability to take supplements or medication, fear of sleeping alone, lack of organization and the list goes on. Her aggression usually came out during her hallucinations and one time I got hit in the back of my head, "Thwack!" with a book. In the beginning, they were only for a few moments, sometimes they would last for an hour. The most frustrating thing for me is that I usually did not realize they were occurring until after I saw that her behavior was not making sense. Some hallucinations were that she was somewhere else; some were that she saw things in the air; others made her think that she was in a time or place different to reality. The worst hallucination that I remember her having was at bedtime one night when she thought that she was locked up in a hospital ward. She did not know who I was. She kept asking to be returned home to her Daddy, Mommy and two dogs in Chicago. We live in Georgia and my husband passed away several years ago. That was heartbreaking.

As if all the above was not hard enough to endure, she was also subjected to societal misconceptions. One school told her that she would not be accommodated in the fall because  of her autoimmune disorder. Another moment was a ten o'clock night visit by the police and Department of Family and Children Services who were conducting an investigation based on a complaint. The complaint was that I was taking her to too many doctors and not taking her to the doctors for treatment. (Yes, that is the truth!) It was later proven with assistance from a politician's office that the complaint was false, unfounded and, subsequently, both my child and I were cleared of any wrongdoing. For two months the entire event sent her emotional state plummeting even further and made me all the more concerned for her overall well-being. 

In retrospect, my former caregiving experiences with my husband proved to be the greatest source of strength. Though my child saw many doctors, took many tests, and gave up a lot of blood, we managed to narrow them down to a concentrated team. As mentioned previously, there was her family doctor (who initially diagnosed her), her pediatrician who has lot of experience with PANDAS, her chiropractor who has a background in neurology and nutrition, and her social worker. I never but asked, instead informed them that we would all work as a team, each supporting  the other's recommendations or need for information. It is a recommendation I would make to anyone walking down the PANDAS path. For my daughter, it ultimately was the smartest decision I could make. Family and friends were added to the team. Often, I called them when I needed support, sanity or a laugh when I only felt like crying.

There was also an additional special team member. It was a brand-new dog that we obtained from the county dog rescue program. After having him in our home for one month with no training, he started alerting that she was having seizures. Immediately we placed him into training classes. We decided his purpose would be to eventually accompany her in public for seizure alerting. For the short term though he would be the team member who would comfort her as she came out of her hallucinations and wake her up when she fell into her deep periods of sleep. He was my first assistant and still serves in that capacity.

Other therapies included dietary, educational and reward-based planning. Making changes to her diet proved very helpful in helping her to regain her focus and she was placed on a diet-free of chemicals, decreased sugar intake and a more natural diet. It is really hard to follow when the child is a picky eater and focuses solely on one type of food to eat. At one of her schools, we were lucky to have the assistance of a teacher who was also an intervention specialist. She constantly and creatively worked around my child's abilities or lack of abilities to her complete her work. Rewards at home would consist sometimes of small things such as food items, or movies and be motivators for completing one day's worth of homework on time, waking up on time, taking supplements or other daily living tasks.

Less than one year ago, she had her tonsils and adenoids removed, which is an additional popularly recommended therapy. The idea is that the two are germ catchers and if they are removed then it will slow down or possibly stop the repetitive reinfection of strep. Our experience has been that at this point in time she has not caught it again. She has not endured hallucinations in over a month. Her appetite has picked up and her grades are starting to return to normal levels prior to her getting this disorder. Even the discussions of going to be with her peers have returned. However, we clearly understand that for the time being PANDAS is a life- long diagnosis.

Like a bug, my daughter and I collectively say, "Thwack! Be gone PANDAS! You are not welcome in our home! You are not welcome anywhere at any time! Quick, someone go get the fly swatter!" •

Author's note: There are many facets to PANDAS. This is merely my account of our journey with it. Your journey may differ. PANDAS can appear in the form of a sudden unexplained behavior and it seems to come with strep, but can also come with Lyme or ticks. There are many families who have encountered this with children who have autism or other immune challenges. It is my strong recommendation that if you suspect your child has this, get both the stick and blood strep tests completed followed by a conversation with your doctor. Then find a support group to associate yourself with to get additional medical and community resources. — Writing the last words on this, I just learned that she has strep again; number ten in two-and-a-half years!

ABOUT THE AUTHOR: Laura George is an Emergency Management Disability Liaison and sits on the National Center for Independent Living Emergency Preparedness Committee as well as other national, state, and local committees. She has spent the last 13 years volunteering her time, consulting, presenting and writing on the idea that emergency design needs to include everyone. She is also the author of "Emergency Preparedness Plan: A Workbook for Caregivers, People with Disabilities, the Elderly and Others." In her spare time, she shares smiles with her daughter and dog (assistant), Turkey.