There I was, sitting in Disney’s Hollywood Studios parking lot, tears streaming down my face on the phone with the hotel that I was cancelling a stay with. Clearly, we needed to go home which was a minimal 16 hour drive. The gal on the other end of the line, “Sure, we can cancel your reservation, I’m so sorry that you had to go to the emergency room.” I could barely get the words, thank you, out.
I hung up the phone, and glanced back at my son and daughter. My son (Jesse) just stared out the window, moving his head back and forth for stimulation while my daughter (Grace) stared at me with wide eyes. She softly said to me, “Mom, I don’t like to see you cry”
I started the car and sat there for a minute thinking, how did I, how did “we” get here?
Jesse was diagnosed with Severe Infantile Autism at the age of 18 months. We did the normal traditional therapies with little success. When he was almost 4 we found a program called RDI . When we started using some of the strategies, we saw progress that we had not seen with anything else we tried. It was exciting to watch as my son’s engagement increased. While addressing his neurological development, there was always a piece of the puzzle medical related. We gave him Enzymes for digestion, probiotics for his gut, vitamins and minerals, and amino acids. Everything had its place in helping. In addition to RDI as his main therapy, we did movement and reflex work with various therapies.
Fast forward 6 years, and the progress was remarkable. We had meaningful conversations together and he would share with me his thoughts. We would laugh at jokes together and as a family, our lives were no longer impacted by Autism. One thing that nagged at me was, he never got sick. Literally up until the age 11 he had 2 colds…that lasted a day. One of them he had a fever. He had never thrown up, had the stomach virus, etc. I mean, yes I walked around saying look how healthy he is, he never gets anything.
When Jesse was 7 I decided to get trained and certified in Relationship Development Intervention…the program we used with him. I wanted to help other families, help their children when the word Autism enters the house and parks itself within the family dynamics. My training took 18 months and I was on my way to starting a career in a field that I had been thrown into because of my own journey. This is what I wanted….to be able to pass on what I have learned.
All was running smoothly, and I adore each and every family that became my “clients”. To this day, their kids are “my” kids too, as we try and unravel together the complexities of their obstacles. When I started with a family, and got to know them and their child or children, I would think to myself, Oh yes I remember this!!
Little did I know that “this” was not a distant memory…but that Jesse was about to take me into another journey kicking and screaming.
I don’t remember the day, but I remember thinking to myself in the fall of 2011, something is different. Jesse seemed out of focus, not himself. A few days later, my daughter complained of a sore throat. That sore throat would not go away so I took her to the doctor where it was confirmed she had strep throat. Jesse was with us so they tested him too. Negative for him.
The second day of antibiotics for Grace and Jesse started making this gurgling noise within his throat. I would glance over at him and he would be looking through the side of his eyes, something I literally had not seen in years! He was not really sharing communication with me any longer, mostly just for me to get him something. What happened to my boy? The next day or two, to the best of my memory, in the morning, he started barking, like a dog occasionally. I looked at him when he did it and would ask “What are you doing?” with this confused look on my face, to which his reply was, “what am I doing?” We would get into this discussion about him barking and he just stared at me in this confused state. The “barking” got worse. Within a week, he was barking every few minutes, and seemingly had no idea he was doing it. I raised my voice at him, tried to talk to him about stopping this phase he was going through, etc. It was only when a friend and colleague commented that it sounded like PANDAS did I realize this was not something to take lightly.
What is PANDAS?
Authors: Evelyn Stewart, MD, University of British Columbia, Vancouver, Canada
Tanya Murphy, MD, University of South Florida, St Petersburg, FL
Copyright © 2010 International OCD Foundation (IOCDF), PO Box 961029, Boston, MA 02196, 617.973.5801 http://www.ocfoundation.org
• The term ‘PANDAS’ is short for ‘Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus’ (The word streptococcus is often shortened to ‘strep’).
• A child can be diagnosed with PANDAS when: o Obsessive Compulsive Disorder (OCD) or tic symptoms suddenly appear for the first time, OR o The symptoms suddenly get much worse, AND o The symptoms occur during or after a strep infection in the child.
• PANDAS is caused by the body’s immune reaction to strep, not the infection itself (Swedo & Grant, 2005). When an infection happens, the body’s immune system makes a variety of proteins to help fight the bacteria. Some of these proteins are called antibodies and can be clinically measured. The exact way that causes the neuropsychiatric symptoms (OCD, tics, etc.) is not known.
• Other immune triggers have been also reported to worsen OCD and tics (like Lyme’s disease, influenza, mycoplasma, etc.) and because the connection of the immune system to the neuropsychiatric symptoms is not fully understood, little is known about the best treatments (which may be different from other kinds of OCD treatment.) Currently, there are no scientifically approved evaluation and treatment protocols leaving clinicians and parents guessing at the best options for having these children assessed.
1. Children with PANDAS are initially diagnosed with Obsessive Compulsive disorder or a tic disorder. OCD and tic symptoms in PANDAS are similar to those in the classic forms of childhood OCD and tic disorders (Murphy, Kurlan, & Leckman, 2010).
2. PANDAS first appears in childhood from age 3 to puberty. In addition to OCD or tics, these children may have some or all of the following symptoms:
• Sudden unexplainable rages (also called emotional lability)
• Personality changes • ADHD (Attention Deficit Hyperactivity Disorder) that is new or dramatically worse.
• Anorexia (often because of a fear of choking, or fear of throwing-up)
• Nervous system disorders such as tics or other rapid, jerky movements
• Age inappropriate behaviors (such as bedtime fears/rituals, loss of impulse control)
• Separation anxiety
• Defensiveness caused from hyperactive senses (such as sensitivity to clothing, noise, light, taste, etc.) • Noticeable decrease in handwriting or math skills
• Frequent urination (especially when the child has an active infection)
3. Diagnosis of PANDAS should be discussed after symptoms first suddenly appear or severely worsen. Usually this change is severe and dramatic. Many parents can pinpoint a day or a week when behaviors changed.
4. In PANDAS children, a strep infection occurs before or at the time the OCD symptoms ramp up. Assuming the infection is adequately treated, the first symptoms generally improve within 4-6 weeks. The next OCD episode may last longer and may be triggered by a variety of immunological challenges such as another strep infection, or by other bacterial or viral infections (ear infections, sinusitis, pneumonia, meningitis, impetigo) making a diagnosis more difficult.
5. Lab Tests: • A throat swab (rapid and culture) to test for strep can be done when symptoms first appear.
Kathy Darrow is a certified RDI consultant . She travels the country helping families adopt the RDI lifestyle both as a consultant and a speaker. She lives in New Jersey with her 4 children , 2 of which have autism. You can find her on Facebook at Mastering Milestones in Autism or on her blog,What is RDI?