There’s a lot that people don’t understand about PANDAS and PANS in general, but there are complexities around parenting these kids (and others with similar and overlapping qualities/disorders/illnesses) that others just don’t quite understand.
There is an inability to be carefree, to let your hair down and be present. There is an everlasting shadow over the family as the primary caregiver has to spend their time predicting the next episode, the next appointment, the next co-pay. They are never completely there in the moment. We are tense, anxious, and high strung.
Our standards are low. Our kids are fighting and struggling every day. They just want to be normal. Most days, OCD prevents a dishwasher being loaded and the tics start up at homework time. We are not working with fully functioning children, so we can only expect as much from them as they have to give which varies by day.
We can’t keep commitments. We just can’t. Things change at the drop of the hat in most p/p homes; but we want to come, so please keep inviting us.
We are avoiding illness like the plague. Covid shutdowns were nothing. We were already used to most of that experience.
We are fighting against something that many doctors don’t believe is real; actively use to report medical abuse; or refuse to provide proper testing and treatment for. There is always a new reason to be worried. We never know when or if our child will be better, when they will flare again, or if we will ever meet the person they were supposed to be before they got sick. We watch them lose their childhood slowly day by day.
Being a PANDAS/PANS caregiver builds a person who becomes unable to relate to the average parent. We are trying.
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