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young PANDAs patient, IVIG and scared


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Hi,

My 2.5 year-old daughter had an acute onset of OCD/personality changes after a recent bout with strep in early September. It was like she woke up a different child. She was 100% typically developing before this episode, and I now feel like everything has fallen off a cliff. Over the course of that Sept week she developed, tics, a stutter, aphasia, extreme mood swings, and behavioral regression. My pediatrician (god bless her) said we should swab for strep. Lo and behold, my daughter was positive.

My daughter stoped sliding downhill on augmention (she's still on it..going on week 6) and stopped stuttering, tics reduced but the inattention/personality changes have been more difficult to shake.

The whole epidose abated completely with 5 days of steroids in early October, but as soon as she was off the steroids, some of the ocd started to come back.

We are seeing Dr. Latimer in DC. Our daughter's positive response to steroids made her a good IVIG candidate, and we completed a round of high dose IVIG just this last wednesday and thursday.

Our poor babe spent Friday with an awful headache, and is still withdrawn, obsessive and inattentive, though her language is okay. How long does it typically take to see results with IVIG? This is her first strep episode that I know of. Is there any chance we can reverse this beast entirely at this early stage? How long will it be to see results? Is a bit of a flare typical after IVIG or not really? How will we know if and when we should repeat IVIG?

My older son has ASD, and frankly that is the neuropsych challenge I'd been preparing to deal with over all these years. I have been caught totally off guard by this disease's sudden kidnapping of my brilliant loving daughter. Feeling really alone. Does anyone have any advice about what to expect now?

 

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