Snips, Snails and Puppy Dog Tails.

Our PANDAS testimony...We recently learned that our sweet boy is not suffering strictly from anxiety, OCD, tics and ADHD, but a more medically based issue called PANDAS.  Our adventure with PANDAS began in August 2016.  Jackson started school at Taft and after a week, he moved to a new classroom due to personnel changes.   One day in August 2016,  he became terrified to go to school, cried for an entire day, tried to run away from school, refused to sleep in his room, became belligerent and angry at home, started having urine accidents and encopresis at home and at school.  We noticed a significant change in his personality, but behaviors were attributed to his ADHD and changes including grief after the loss of his grandfather several months before.  His psychologist recommended medication.  We made frequent trips our family doctor to tweak his medication because it would work for a month or so and then intense behaviors would return for a time.  This happened for several months.  We also noted that he complained of lots of headaches and “problems with his brain”.  He would state that he couldn’t make his brain do what he wanted.  He was evaluated for glasses but refuses to wear them most of the time.  He has lost (or thrown away) two pairs.   During August/ Sept 2016, he started counseling at school and Jackson was placed on an IEP for OHI. In the fall, his reading declined and during Christmas break, 150 incomplete papers hidden in his room. More symptoms surfaced including vocal tics, OCD behaviors, severe paranoia and separation anxiety, increased aggression and major sensory sensitives.  During this period, he was unable to recover quickly from an anger outburst, was wearing earplugs during church services and having problems with clothing.  A decrease in reading skills was noted as in March, the teacher said she thought his testing would be at expected benchmark, but that was not the case after testing.  I sought out help from a psychiatrist in Edmond and we had some success with new medication for the first several months.  In April 2017, Jackson had a significant change in behavior. His aggressive behaviors and negative thinking increased. Concerns about him hurting himself or others were present.  We continued to follow up with the doctor and tweaked medication, started weekly Occupational Therapy in Edmond over the summer of 2017.  Over the summer months, he seemed to be having more success- behavior control, handwriting and reading improvement.  However, the OCD and tics were still present, but controlled while his ADHD meds were active.  Beginning school in August 2017, I have noticed inconsistent patterns of ability—some weeks seem more successful and cooperative than others do.  In November, Amy took a new job to have more consistent hours, but had to stop occupational therapy.  In Feb. 2018, I made an appointment with the psychiatrist due to increase in his tics, OCD and sensory sensitives.  Our previous provider was no longer at the clinic, so we were moved to a new provider who listened to my concerns and ordered some blood work to confirm his suspicion about a PANDAS diagnosis.  Bloodwork confirmed his diagnosis in late Feb. 2018 with significant increase in strep titers and DNase.  The first course of treatment included 10 days of antibiotics and steroids to reduce inflammation and calm down the immune system.