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Posted
Great idea mom md, I do that because it keeps my MS symptoms from flairing. I always thought if my dd has hormonal changes and it makes her pandas symptoms worse I would put her on the pill continously too. I have always felt estrogen is immune modulating and maybe it strengthens the BBB. Funny how people with MS seem to do better while pregnant, when the immune system is calm. But I have also read where Sydenhams Chorea can flair again during pregnancy. So, this interests me with the hormonal thing, and I am concerned because my daughter is about 1 year off from puberty. Mom md, any ideas why sc would flair during pregnancy?

 

All this hormone stuff is especially interesting to me, since my son's latest exacerbation -- after 5 relatively quiet, calm years -- seems to have come with his entrance to puberty! But, obviously, birth control pills are not an option for him! Any other ideas along these lines? Anyone else with PANDAS boys recognize the same exacerbation timing?

Posted
Let me admit I have no experience with PANDAS and gynecology but being that I have a son with PANDAS and I am a gynecologist...has anyone even seen what the birth control pill would do. We use it to "shut down " the ovaries and take the stress of hormonal changes out of the picture with some diseases. Day five of her cycle her hormone levels are really low and her body is dealing with the stress of losing blood...maybe if a child was placed on a continuous pill which prevented the cycle. Just a thought.

 

 

thanks for your thoughts. I have no idea about this but will run it by the doctor when we go. We are seeing Dr. Trifiletti on Wednesday.

Angela

Posted
What is the dosage for the Advil you've given?

 

Right how we're giving her 200mg twice per day. It was working for a while. She's having a hard time right now but I don't dare stop the Advil for fear things will get worse. 1 200mg dose brings her about 22 hours of relief. Two a day makes it so we don't have the lag before the next dose. Half an hour after dosing, things begin to calm back down again if I go longer than about 22 or 23 hours.

 

Angela

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