Off all antibiotics temporarily

As most of you know, Faith has been on antibiotics most of the past 15 months to try to eradicate the resistant strep throat infections she has, that lead, in her case, to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).  She’s has not attended school since mid-December & soon after a hospitalization for several days at Christmas, she started Homebound Education to keep up with her studies.  She’s worked very hard on her school work and her grades are good; I anticipate she will make honor roll and I am so proud of her!

However, the strep infections continue to resist treatment.  Thus, our pediatrician is pulling her off all antibiotics temporarily to allow them to get out of her system so that we can do a C & S (culture & sensitivity), in hopes that this will, once and for all, give us the information we need to choose the correct antibiotic(s) to eradicate this incredibly virulent Group A beta-hemolytic strep infection.

She took the last dose of her antibiotics yesterday morning.  Just as I was learning about a social situation she struggled in while at school today and we were discussing it, she declined into an episode.  This one included severe separation anxiety where she was unable to detach from me (literally and physically), unless there was a locked door between us so I could use the restroom, at which point, she became panicked (had a panic attack), tried to get through the door (in her panic to get to me) and became mute… she was able to write what she wanted to say (although with barely legible handwriting… see handwriting examples below), but could not speak for a while, and then, not clearly enough to be understood.

It lasted probably about 1/2 hour for the worst of it.  Poor child… my heart breaks for what she goes through when the antibodies attack her brain like this.  All I can do is imagine what it must be like to endure this medical condition.

Prayers for her (and the results of the strep culture that will be done this week) are especially appreciated these next few days as she is without any antibacterial support as we seek to determine our next step for that medication to eradicate these seemingly never-ending strep throat infections.  Also, she is trying to attend this final week of school (last day is Thursday, this week), making it more of a challenge for her than being home.  Hopefully, this difficult week will pay off with great results if we can gain valuable information from the C & S.

Please see below for more insight into this condition with handwriting samples of hers over the years, both when she is not afflicted with this condition and when she is.  As always, if you should have questions at any time, please feel free to comment or use the Contact Us page to email us.  Thanks for following our story; God is with us on this journey!

Second grade, spring 2008

Homework in 6th grade, Spring 2011 (taking antibiotics, but strep not yet clear)

May 8, 2011 for sample on right on card (uncertain of date for left sample on paper) Sample on right -> taking antibiotics, but not yet clear of strep infections... 2 days post IVIG infusion @ higher dosage

June 13, 2011, evening -> middle - end of episode (typical sample when episodic)

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3 Comments (+add yours?)

  1. angel Thompson
    Jun 14, 2011 @ 20:56:54

    My friend. Our son was dx with PANDAS 17 months ago. He also has Autism. Brilliant outgoing young man, but when he got Scarlet Fever…it went downhill.

    As I read your post my heart truly is with you. Our daughter’s name is Faith and she has been such a trooper with her big brother who is now paranoid, impulsive, cannot be without me, sad…he knows he has PANDAS and asks God daily to take it away.

    Please know as I pray for my son….I will also lift up your daughter and your family.

    The Thompson’s
    Matt, Angel, Joshua and Faith

    Reply

    • PANDAS - PITAND ~ Mom to My Hero
      Jun 14, 2011 @ 21:47:47

      Thank you so much, Angel… she is having a tough week and we deeply appreciate prayer. It is indeed a challenging road our children travel; knowing God holds us up in so many ways… connecting those who understand is only one of those.
      Lifting your family in prayer as well,
      Denise ♥
      P.S. Happy birthday! ;~)

      Reply

  2. Trackback: End of the school year … « ~♥~ Faith's Updates ~♥~

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