Update of last few months and request for prayer…

Faith was probably about 80-85% in remission at the end of the summer as school began.  This was such a huge improvement over where she was last winter – so very ill and we were very concerned.

She started back to school with a late start and modified schedule.  I noticed a renewed confidence in her that I’d not seen in longer than I could remember – years.  Grades were excellent, she looked much healthier.  While I knew she still had a long way to go (her PANDAS specialist estimates two years for her brain to completely heal), I was starting to feel oh, so relieved!

On October 14, she was diagnosed with another strep infection.  She had 2 weeks of antibiotics and it seems to have cleared.  However, she started having severe migraines that we could not break with medications and wound up hospitalized twice – once in October and again in early November.  They remained severe and she missed a great deal of school and fell behind in classes again.

Autumn 2011 hospitalization for severe migraines

Autumn 2011 hospitalization for severe migraines

We learned of a family member who has Celiac Disease and since removing gluten, has noted dramatic improvement in migraines.  Although she tested – for CD, on the advice of her Neuro-Immunologist, we decided on a 3 month trial of a gluten free diet for her – I’m doing the same as my migraines are also severe and frequent.  Additionally, many PANDAS kids are gluten free as it seems to help with autoimmune diseases.

At about three weeks into the GF diet, the migraines finally calmed – praise the Lord!  She does still get them occasionally, but with the exception of one of them (2-3 days pre-MRI – she was very nervous about the MRI and it calmed afterward), they are responding to first line medication now.  We’ve been doing this for about 2 months and it certainly does seem to be helping.  We’ve had several storms now in which we’ve walked out of the house and been surprised to learn it is raining – this is huge for us as we are so triggered by weather that we are more reliable than the weatherman at predicting rain within 1-2 days.  At least, we were before going GF.

Faith missed almost all social activities during the autumn as her health declined.  She signed up for Junior Cotillion this winter and we hope she’ll be able to attend all 6 events – it would be so good for her to have some fun in her life.  I was able to snap a rare photo of her as she headed to her first one when she looked the healthiest she has in a very long time.

January 14, 2012 - Hollywood Night

Junior Cotillion - Hollywood Night

Lovely, yes?  🙂  Unfortunately, this was a rare moment and she’s exhibited a rather steady decline in recent weeks.  While an episodic course is to be expected with PANDAS, she’s taken a more negative trajectory in the last several weeks and I’d estimate she’s about 65% healed at this point – wrong direction.

We’re working with our Ped and we see her specialist this week… please keep praying for wisdom for all of us and clear treatment solutions that will get her back on track to 100% remission.  Thanks so much for your prayerful support; it means more than we can articulate!

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