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mamaluvsyou

sleep issues after ivig?

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Our dd age 5 1/2 is two weeks post ivig. We have not been one of the people who saw an immediate improvement. In fact, we saw a big flare in PANS symptoms about 2-3 days post ivig. I'm glad that we we had heard from other parents ( not doctors) that this could happen. Based on how bad the flare was, I was terrified, but she recovered very very quickly given the severity of the symptoms. She is doing ok now, but not sleeping at all. We have had our fare share of sleep problems like most of you probably have too. Usually though the sleep problems occur in a flare and now that her day time symptoms seem very much under control, yet she's still not sleeping?!

 

I am wondering if anyone else saw a problem with sleep post ivig? Also, any other ideas to help with sleep? We use theanine, melatonin, and magnesium. As you know the sleep thing is so important, critical, and vital for these kids (and our family). Any thoughts would be welcome. Thanks!

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We have experienced this with my son when we had to give him steroids. It would last several days after his last dose of steroids. He just wouldn't sleep. His PANDAS symptoms would be completely gone - but he just didn't sleep. We no longer give steroids at all unless ABSOLUTELY necessary, but after 5 IVIG's, he doesn't even get any side effects anymore, so its not a problem.

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