How is she doing?

I’ve received a lot of questions about how Faith is doing, especially since her hospitalization at Christmas and our recent trip to see her out of state doctor.

Faith has CVID (Common Variable Immune Deficiency) and her doctor told us that children with PANDAS who have CVID also, require IVIG to get better.  He *hopes* (asked us not to hold him to it as each case is different) to see her at 90% in about 1-2 months and back in school.  We are praying that all goes well and his estimate is accurate!

Faith had high dose IVIG infusion inpatient at Christmas.

 

IVIG in the hospital Christmas Eve & day before

She woke the next morning and told me that she felt better than she had felt in a long time.  I asked her how long and she said that she didn’t remember, but she felt ‘like myself’ again.  We saw dramatic reduction in her symptoms.  It’s important to note; however, that she was severely ill and in crisis just prior to that admission, so yes, a huge improvement, but still a long way to go.

We noticed her declining again with an increase in symptoms about 1-2 weeks before we traveled.

While we were out of town, our return flight was canceled due to the snowstorm in the area; however, this turned out to be a blessing as our doctor and staff were able to obtain approval for the high dose IVIG infusions she needs until August 2011.  She received one before we left.

IVIG in CT – Jan 27, 2011

Initially, she was exhausted from the travel and lack of sleep, as well as the infusion.  Since she’s gotten some rest, we are seeing improvements again; however, she contiues to sleep a great deal (12-14 hours at night as well as 3-5 hours during the day) and is still episodic with symptoms much of the day…. still a long way to go, but she is clearly making some progress!

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