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Different symptoms getting better & worse at the same time?


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A while back I wrote about my younger son, wondering if he could have PANDAS too. Things have continued to devolve since then and I’m driving him to Dr. Rao (PANDAS specialist immunologist) for a full work-up next week.

 

I have two questions for the crew today:

 

1) Have you ever noticed that some symptoms get better while others get worse at the same time?

 

BETTER: One of my 5 year old's biggest symptoms was that he was not consistently dry. Today, after a round of strep—and antibiotics for strep—he is almost always dry day & night.

 

WORSE: He’s developed full-blown OCD--hand washing 50x a day, fear of contamination, constantly asking about what can kill him, it this poison—it’s very, very distressing. He’s also even picker about food than before and over-sensitive to smells. He’s just in a state of high alert all the time. Apparently he functions well at school, he just falls apart at home.

 

2) What do you recommend to help calm a child who doesn't have an antibiotics prescription and who won’t swallow pills? He’s already taking chewable fish oils, vitamin d3, vitamin C and a probiotic. And sometimes ibuprophen.

 

In case it’s not clear, we still do not have an official PANDAS or PANS diagnosis as his titers are not high and there’s no clear connection to strep (or not clear enough for my nice but not PANDAS-knowledgeable pediatrician).

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I hope you will get abx after your meeting.

otherwise, in addition to what you are doing already, you can do ibuprofen 3x a day, see if you can get a steroid burst, change diet to reduce inflammation. the latter may mean gluten and dairy and nightshades and sugar free, if you are not doing that already.

our kids were cycling through symptoms. those that go have only rarely come back. to my mind, this cycling is among the signs that what these children have is an autoimmune reaction not OCD.

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