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JessL

During a flare, do you use childcare?

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As in a family member or otherwise? 

I have had family offer to take my daughter when she's sick so I can go to work etc, but most of the time she doesn't want to go anywhere. If made to she holds it in and her flare is 10x worse the second she gets home and through the next days, also giving them the impression she's being 'naughty' or manipulating me. 

Providing a 'safe place' with me or 'giving in' to her demands.  My gut says I'm providing a safe place for her very overwhelmed brain but I'm getting a few other comments from family which have me second guessing.  

How are you guys dealing with this? On a wait list for our neurologist..

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I spent a couple of months trying to push my teen to school because the experts Dx'd "school avoidance due to anxiety".  They provided extra supports, but pushed me to take him even when he had a mild infection and a flare due to that.  Worst idea anyone had.  It was torture for him, torture for me. Not only did it cause his brain to be even more in fight and flight, it made him (understandably) less trusting that I'm "on his side".   

If she's worse the days following a stressor, even if she "held it in", it means that she had to borrow emotional energy from the future when she was scraping bottom, at ruthless "payday lender" rates.  (My son thinks of it as 2:1 or 3:1 conversion when borrowing from tomorrow,;4:1 or even more if he has to dig even deeper and borrow from the succeeding days).  So he wound up going to school for a part day one day, and then was absolutely wiped out for 2-3 days after.  

Trust your gut.  I didn't initially -- thanks to well-meaning extended family, teachers and misguided psychiatrist.   

But think about it this way:

Do you think any kid likes being anxious, irritable, out of control, with folks not understanding you? 
With others coaxing, commanding, maybe making fun of you? Or threatening "consequences"?  

If she could be resilient and her normal self, she absolutely would be. 

Try to remember when you have the "sickness behaviors" of influenza or mono -- malaise, irritability, fatigue, being non-sociable, low mood, no motivation. Are you being manipulative then?  These "sickness behaviors" are hard-wired.  You're miserable due to inflammatory cytokines from a primitive immune reaction in your body and brain, designed to get you to stay in bed, do nothing, so your body can heal.   

What I had to learn with my kid is that the severity of his flare had no relationship to how severe the cold symptoms were!  In fact I remember remarking that soon after his onset, the colds were shorter, more minor than before.  My understanding is that the immune response had gotten derailed -- so instead of making the type of inflammatory cytokines that cause a runny nose, his body was busy making the ones that crossed into his brain and made his brain flare.  

You are providing an absolutely necessary haven in the storm. 
She doesn't want to be in the storm.  And certainly not in a relative's home while she's in the storm.

Tell your friends if they want to help, you'd love their help -- but in ways that don't add stress to her brain.
Examples:

  • could you send them your grocery list? 
  • a list of herbal supplements to track down and get,
  • send a link to a recipe that would make some (frozen) comfort meals for your family, for a bad day.
  • Having a friend come do your laundry, or help fold laundry with you, or garden or whaterver, could be wonderful -- as long as you (and your daughter) knew they wouldn't judge your daughter -- or your parenting.  

(BTW, I now have a friend like that living with me, and it's so freeing, so wonderful for all of us. 
How does she know not to judge?  Well, she grew up with similar judgment, from family and then husband.   She never had any clue what was wrong but "laziness, anxiety", and MDs chalked up all symptoms to anxiety/depression (so easy). She learned to hide it super well due to all this awful judgment -- it's only after she moved in with me that I realized she had these waves of fatigue, brain fog, sweating, hard breathing -- and that they could start suddenly, after bending or reaching, or gluten.  She never remembered what triggered it -- due to the wave of brain fog, anxiety and embarrassment (duh).  Now we're a good support for one another, together figuring out her illness and my son's.)  

Good luck!  You can always find understanding folks here!

PS.  BTW, for my kid, steroids, IVIG is what helped my kid most -- and then treatment for MCAS. Had we had good treatment early, good antibiotics against strep or sinus infections treatment might have been enough. Or, getting him away from mold  within our home (sigh).  But he never created antibodies against strep, and the mold was within our walls, and I was the only one who ever smelled it. 

PPS.  At least in NZ you don't have to worry about COVID-19, unlike our Trump-forsaken-country, now at even higher COVID-19 rates than in spring.

PPPS. Neurologists often don't get AE/PANS; there are a few influential neurologists who for the last 20 years really resented this intrusion into "their turf" of Tourette's.  So if you're told that it's just tics, OCD, or manipulation, don't be discouraged -- simply don't believe them.  
 

Edited by wisdom_seeker

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Thank you again for your response!  Such a great way to describe the situation and get the point across and I will make note of the lending terms when I explain this to family. 

We are very fortunate to have pediatric neurologists who have studied with Dr Russell Dale in Australia that now work at our childrens hospital and have a particular interest in PANDAS/PANS, our gp has specifically requested us to see them.  I have another appointment with our gp tomorrow so hopefully he can speed things up.  Making note of the tourettes turf!
IVIG has been suggested for us in the past and I am hesitant, I guess it's confirming this is a real thing and that hits hard :(

 

 

 

 

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