Mother and Daughter

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The Scariest and Most Dangerous PANDAS Symptom

As most of us with a child in our lives who has PANDAS or PANS, we have learned that each bout, or exacerbation, can bring different behaviors or symptoms.  My daughter would always experience anxiety, however, it would manifest in varies ways each time.  Like a shapeshifter, PANDAS would change her behavior and thoughts, but I would still be able to see her true self deep inside.  After the first year we became familiar with how these changes would take place and plan ahead for the ones to come.

We are four years into our PANDAS fight and my daughter is now 12 years old.  Over the last year her symptoms have improved, narrowing down to a mild level of OCD to where it was not interfering with her everyday life, and her anti-strep titers were declining.  We were lucky enough to have several months where things were pretty steady, then she tested positive for strep throat.  I watched her behavior closely, expecting it to change and the increase in anxiety to hit, only wondering what form it would morph into this time.

She did begin to change, only this time there was in increase in her OCD without the added anxieties.  There was moodiness, but lets face it, we are talking about a hormonal adolescent in middle school...who wouldn't be moody?  Nothing seemed abrupt - how PANDAS is known to take over.  What I did not think to do was consider the various other neuropsychiatric symptoms known to be associated with this disorder.  Below is the list from the National Institute of Mental Health...  Do you see the scariest and most dangerous one on the list?  This was the one I missed.  I was looking (and waiting) for her "normal" PANDAS to show up.  There is nothing normal or fair about PANDAS.  Please, please, please don't make my mistake.

With respect for my daughter I promised to not share the details of her situation, and I hope some day she will find the courage to share her story with the world, however, I must share the severity of this disorder.  No child should lose their life to suicide, and no child should lose their life to PANDAS.  We must spread awareness.  Please share this information, especially with those that you know who love an adolescent or teen with PANDAS.  They are more likely to have the means if they have the thoughts.  We all know these thoughts are not in their control, they are neuropsychiatric, so we have to work together to help them survive through it.

a. Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.)

b. Generalized anxiety. which may progress to episodes of panic and a "terror-stricken look"

c. Motoric hyperactivity, abnormal movements, and a sense of restlessness

d. Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations

e. Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas

f. Increased urinary frequency and a new onset of bed-wetting

g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide.

h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms)