We found out this week, in a clinical way, just how brave MiraMae is and has been over the course of this PANS fight.  She's a giant in her own right.....a pint sized hero who has faced the most insurmountable foe - and she has won the first battles in this war with PANS.

The war is not over.....but she has cleared the first hilltops on her march to complete healing. 

Of course she has not accomplished this on her own or by herself - God in His mercy and love has surrounded this little girl with an amazing team of people with specialized skills, knowledge and experience to beat  back this devil of PANS.

1.  She was given the proper diagnosis by a doctor who knew how to treat her to save her brain from deeper damage.  Dr. Vinay Puri (The Lion of Louisville) has fought a hard battle himself - to get MiraMae the kind of aggressive treatment that PANS requires to protect the brain and give children their best chance of real recovery.

2.  Her parents built a team around her and advocated in every way they could for her to get the care and the support she needed to return to school this year.  It took her neurologist, internist, therapist, chiropractor and others to keep her on track physically and emotionally - but they did it and so did MiraMae!

3.  Her teacher, Mrs. Melhorn, has learned right along with Becca and implemented support inside the classroom that has enabled MiraMae to remain in school - a major, major victory in every way.

4.  Christian Academy of Louisville (her school) has implemented tutoring, therapy and numerous cooperative supports to help MiraMae feel like a regular kid all the while communicating important observations and concerns so targeted treatment could progress on the clinical and mental health side of the fight. 

5.  Kylie James, OT and functional nutritionist has now joined this team and is really helping Becca apply "food as medicine" so that MiraMae's brain gets the targeted nutrition needed to heal and stabilize.  Brain healing does not happen without sustained nutrition and cellular support.  Fact.

6.  Dr. Eboni Cornish and her team at the Amen Clinic is keeping a sharp eye on MiraMae's physical health, implementing gut and immune system protocols that cool the inflammation throughout her body and support her liver and lymph so she has a fighting chance, at the cell level, of gaining strength and sustained health that supports her brain to heal.  

7.  All of you have been so faithful in prayer and support through these longs months.  We know that God answers prayer - and MiraMae has had an army of praying believers alongside her in this fight.  All thanks to God for each of you!

CLINICAL UPDATE:

This week we received the SPEC scan report from Dr. Sood of Amen Clinic, New York City.  Dr. Sood is double-board certified in Pediatric Psychiatry and Adult Psychiatry and excited to treat MiraMae moving forward on the mental health side of her battle. 

Dr. Sood explained this week that MiraMae's brain is a classic PANS picture.  Her Basal Ganglia, Temporal Lobes, Limbic and Cerebellum are all "lit."  The phrase he used was, "brain on fire."  The scans just prove it in an undeniable clinical construct.  Her brain is experiencing significant neuro inflammation due to her neuro immune response. 

If it is this "lit" now - can not imagine what it looked like even 6 months ago.  Her struggle with crushing anxiety is real - the scan reveals the clinical truth.  And the level of anxiety her brain is experiencing causes all kinds of other cascading disturbances.  Anxiety literally can make a person physically ill.  This is the kind of anxiety her brain is experiencing every day and has been for well over  a year.

The IVIG and steroids and Plasmapheresis Dr. Puri treated her with all through 2021- WOW.  These went a long, long way to knocking down the original fire that consumed her every thought, her every action, her very being!  Thank God for Dr. Puri!! 

Significantly, in the past few weeks, as Becca has implemented a brain healing nutritional protocol and supplements to knock back anxiety and inflammation - MiraMae has begun to emerge from the prison of PANS!  Like literally - the chains have begun to clink and fall away a bit - and WE CAN SEE her beautiful spirit and love for life returning to her!  All thanks to God! 

One day last week she came home from school - and was able to read.  Wham.  Just like that.  She had been on the cusp of reading at age 5 when PANS struck.  The past year and a half she has struggled to read, to write, sometimes sadly - to draw (her favorite thing in the whole world).  Then, as Becca shared - she just came home one day and started reading a chapter book without looking back.  We know this girl had no intellectual ceiling before PANS - may God continue to renew her mind day by day and give her the JOY of learning and knowledge she once immersed herself in!  LORD let it be so!!!

THE GOOD NEWS:  She does not appear to have tissue damage from toxic agents like mold, Lyme's or chemical exposures.  This is very hopeful in that, her brain CAN heal - but not on its own.  She will always be subject (short of a miraculous healing) to Lyme's rearing its ugly head.  

Brain healing for MiraMae must have a sustained, targeted treatment with meds, nutrition, hydration, cognitive behavioral therapy, and close oversight of infections and other pathogens she comes in contact with.  When she comes in contact with things like COVID, Strep, mold, flu, colds, even losing her teeth - she may experience immune flares that again light her brain up and compromise her mental and physical health.  

The war is not over - but by God's grace we have identified the enemy and all the sub-contractors involved.

NOW this team of amazing people..... can use the right tools and treatments at the right times  - and do so with knowledge and confidence that the neuro immune system can be significantly supported and MiraMae can keep winning battles as she grows and heals.  

(These pictures were taken on the night of the Daddy-Daughter Dance at her school last month.  That night was the first time we saw MiraMae in her "full-shine" since before PANS . 

On this night - she felt like herself.  She went to the dance with Paul  (these two have serious soft-spots for each other LOL) - and danced with her dad AND her friends.  Something she hasn't experienced in a long while - just having fun with her girlfriends. 

It was a night to remember for everyone - a night to thank God for all His works in MiraMae's life. )

"I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds."

                                                                                                                                                                                          (Psalm 9:1)