Update on Faith and new Labs

As many of you know, Faith has been having a difficult several weeks/months and declining again with PANDAS (now called PANS) symptoms.

After being on home-bound education for most of last school year, she did return to school briefly with a late start and a modified schedule.  Although she was exhausted at the end of every school day, she had a confidence I had not seen in years.  She was probably about 80-85% in remission at that point and while still episodic, had been on a positive trajectory of healing.


It didn’t last long.  By mid-October, she tested positive for Streptococcus Pyogenes (Group A strep – causes strep throat) again.  If she cleared that one, the PANDAS symptoms didn’t really decrease very well.

She was hospitalized by the end of the month for a few days due to severe migraines.  She was discharged end of October, only to be re-admitted 2 days later for migraines that would not respond to the plethora of medications they were giving her.  More tests and labs… nothing.  We learned that a cousin of hers has Celiac Disease and mentioned this to her Neuro-immunologist.  Faith was negative for CD; however, her doctor suggested we try a gluten free diet for three months to see if it helped.  As the migraines continued, we started that one week prior to Thanksgiving. Her smile seemed forced and didn’t reach her eyes…


At three weeks to the day, the migraines decreased and stopped.  She has had only one since early-mid December that did not respond to medication, but she was uneasy about an upcoming MRI at the time and it vanished soon after the scan…. which was normal.

On home-bound education again, she started pressing through her coursework, catching up on what she missed; however, as the weeks passed, she was clearly declining with a return of PANDAS symptoms.  Christmas came and went… growing into a lovely pre-teen… still, there was something about her smile and eyes that probably every PANDAS parent knows is a warning sign…

  
By late January, she was getting sicker.  She stated she felt certain she had strep throat, but it hurt too much to get a good swab.  Our Pediatrician indicated we should start the antibiotics.  We traveled back to see our Neurologist and PANDAS specialist recently for discussion about her return of symptoms.

She left the antibiotic our Pediatrician ordered in place for 2 weeks and ordered another one to follow it for another 2 weeks.  She also ordered labs to check for known infectious triggers as well as check her Immunology labs (which you may recall, were found to be deficient in October 2010).  Faith had six high dosage IVIG infusions last winter and spring before taking a break over the summer.  When we checked her labs 2 months later, her Immunology labs were in the normal range for Immunoglobulin G (the one that fights infection), although her IgA levels remained somewhat low – thankfully, this has never been so low that she can’t receive IVIg.

We just received the results of the new labs.  These labs show her IgG levels lower than they were in October 2010 and she’s been having a significant return of symptoms.  At this point, she’s unable to complete any schoolwork or meet her homebound teacher for even 30 minutes most days.  The separation anxiety is severe, at times, intense, she’s tired and although she is an honor roll student, her grades have been falling recently as she is not processing well…. and there are many other symptoms.  I have calls in to her medical team to discuss and from what I am hearing so far, it sounds as if we are heading back to the high dose IVIG infusions… at least, temporarily.  We’ll have to see what the rest of her doctors think and how she does on these.  I would estimate she’s about 60-65% remission now, but she estimates about 45-50% and says she is working very hard to hold it together and seem ‘ok’.

We appreciate prayers for her remission… and for us too as we work to help her.  The following video is from a news report in which Faith’s doctor appears, as well as two families also on this journey.  Her doctor states, “These kids are acutely aware something is wrong with their brain… These kids are very, very sick.”

Could Strep Throat Cause OCD?

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4 Comments (+add yours?)

  1. PJ
    Feb 09, 2012 @ 22:20:34

    Hi – What antibiotics has Faith been taking? I hope she gets well soon.

    Reply

  2. PJ
    Feb 09, 2012 @ 22:56:30

    Also- does she have a skin rash? My child takes Cephalexin bid and needed Bactroban ointment for her skin rash. The skin rash also gave her Sydenham’s Chroea symptoms. It’s hard to sort out PANDAS and SC sometimes……at least for me.

    Reply

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