Thank you so much for your detailed story... much of it is similar to ours with DD(10). I too, dismissed PANDAS almost two years ago (late-night searches on anxiety in children) as she was not presenting with tics, or "obvious" OCD (she has irrational fears, mostly surrounding our house catching fire and other threats to me, her mom, and we were already 1.5 years in from what I believe was onset when she admitted to a therapist she was having this). I also could not name the date it started, though I sensed it was fall of 2014, but my husband had just lost his younger sister, DD had a very strict teacher and she later admitted to being bullied on the bus... so the diagnosis of anxiety we first got that October made sense... too bad they failed to note the strep diagnosis three days following (she was complaining of stomach aches when we went in for the anxiety diagnosis... she does not get the classic sore throat, so I feel certain she already HAD the strep.)
We see our first specialist in two days... my question now is, how do you hold the school district (and your spouse) at bay when she has been pulled from school and they all expect her to just go along willingly with the assigned four hours a week of tutoring? She was exhausted after the first session (2 hours straight) and has had MAJOR meltdowns each morning we've tried since, necessitating the session to be canceled... though I believe she is simply not capable of the work right now, I am certain everyone thinks she's "playing" us... her dad even thinks it is "calculated." I'm hoping a diagnosis on Tuesday will help, but I still don't know what to tell the school... how long was it before your son could do schoolwork, and did he have to repeat a grade? Not the end of the world, but she's isolated enough already between missing school and the age regression, which has deterred her from playing with some of her friends (she's leaning toward the kids who play a bit younger)... I'd hate to see her miss out on returning to her current classmates.
Regarding your daughter who is refusing to see the tutor - my son who is now 13 had this same issue two years ago. He would cry and hide when the tutor came to the house, and she was a friend of the family's that he knew well. Your daughter is not playing you - she probably finds it very hard to concentrate for that long. The kids' concentration is severely affected by the brain inflammation PANDAS causes. Consider trying what we did while you wait for treatment from the specialist - we removed our son from his brick and mortar school and put him in online school for a year. Check to see if your school district has an online option as some do. If not, there are both private and public online options you can try. We used Laurel Spings Academy - which is private (so you do have an extra cost involved) - but the good thing about it was since Laurel Springs has a revolving enrollment there is not a solid start and end for completing the grade. Thus, your child has ultimate flexibility. If they are having a bad day (or week) - you can lighten their load. If they feel better - see if they can handle a little more to catch up with work. My son had a very bad year that year and there was a whole month (after he rejected his tutors) that he couldn't get any work done at all. But once he started to respond to treatment, he started working again. He had to work into the summer to finish 5th grade (I think just until the end of June), but it was worth it to have that flexibility and to not worry about the school and tutors breathing down our necks.
My son w PANDAS is much better – what we did
in PANS / PANDAS (Lyme included)
Posted
Regarding your daughter who is refusing to see the tutor - my son who is now 13 had this same issue two years ago. He would cry and hide when the tutor came to the house, and she was a friend of the family's that he knew well. Your daughter is not playing you - she probably finds it very hard to concentrate for that long. The kids' concentration is severely affected by the brain inflammation PANDAS causes. Consider trying what we did while you wait for treatment from the specialist - we removed our son from his brick and mortar school and put him in online school for a year. Check to see if your school district has an online option as some do. If not, there are both private and public online options you can try. We used Laurel Spings Academy - which is private (so you do have an extra cost involved) - but the good thing about it was since Laurel Springs has a revolving enrollment there is not a solid start and end for completing the grade. Thus, your child has ultimate flexibility. If they are having a bad day (or week) - you can lighten their load. If they feel better - see if they can handle a little more to catch up with work. My son had a very bad year that year and there was a whole month (after he rejected his tutors) that he couldn't get any work done at all. But once he started to respond to treatment, he started working again. He had to work into the summer to finish 5th grade (I think just until the end of June), but it was worth it to have that flexibility and to not worry about the school and tutors breathing down our necks.