Update & prayer request

Here are our highlights:

  • Faith had another MRI today (with and without contrast), as well as an MRV.  These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain.  Her headache pain is currently rated at a 6 on a 1-10 scale.
  • Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.
  • She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others.  We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.
    • She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one.  Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.
    • Did I mention that we went Gluten Free in November… a week before Thanksgiving?  Ha!  It’s actually going quite well and we’ve had a lot of fun trying new things!  I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well.  Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden).  While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!!  Praise the Lord for this blessing!!

Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.

I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired.  I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis.  I don’t tend to excel in that area.

Please keep us all in your prayers; thank you.

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?

~ 10 years ~

To the victims, heroes and families... we will never forget. ♥

10 years ago this morning, I was rushing… I had overslept and was running late to exercise before my then-toddler woke for the day.  As I hurried to put on my sneakers in the family room before starting the exercise DVD, I flipped on the news… Tower One of the WTC was on fire.  As I watched in disbelief, a second plane hit Tower Two of WTC and in that instant, Dan Rather articulated what we all knew:  this was war on our own soil.  America was under attack.  In the events that followed, I watched as we all did, in a combination of shock and horror, not knowing what might happen next…. or where.

Arriving at the hospital later that evening, I was briefed on the confidential security measures being taken and that each of us could be called in to help at any time and would have to respond.  I thought of my 27 month old daughter and wondered if I’d be able to leave her in the event of a local emergency.  I thought of the countless heroes who were in New York, Arlington and Pennsylvania, who were doing exactly that.

In the days that followed, I contacted family and friends… my step-sister worked (and still works) about a block away from the twin towers.  One good friend was traveling from the DC area to California that week on business and I could not remember the date… or reach him, initially.  Another friend was a volunteer fire-fighter and went to help in the week following the attack.  Thankfully, each of them are safe… forever changed, but safe!  So many others were not…. freedom comes at a very high price.

 

10 years.  So much has changed.

With renewed fervor, I sought to save my first marriage that had endured things I will not write about here out of consideration for my child… I still believed in marriage and wanted to work through the issues; but, most of them were not up to me and I eventually came to realize that God was watching over us through this process.  My divorce became final and we worked out property settlement, custody and visitation issues.

I finished nursing school, graduating at the top of my class, passed the NCLEX for licensure & started a graduate program to become an MSN as I worked full time in Orthopedics, then Hemo-Dialysis.

I was one of the leaders of the single’s ministry at our church and blessed with good friends.

My toddler continued to grow and started school, placing in the gifted classes for Math & Reading.  I remember how proud of her I was… how content I was with my life.

I met and later married my husband, Dan and became a step-mom to his daughter.

We bought our first home together.

Our girls became fast friends… could we be any more blessed?

Life was good and even though we thought of ourselves as thankful for our blessings, we took so much for granted… and everything was about to change.

We immediately faced one crisis after another… my husband endured changes at work that led to a health crisis of Major Depression for him that lasted two years as doctors sought to adjust medication.  Months before that one ended, we faced another for me – Dysautonomia, the worst of which lasted about 3 years and had me bedridden in weakness with alarmingly low blood pressures hovering around 60’s/40’s.

Many months before that ended… one day changed everything in our lives as we faced yet another and perhaps the biggest fight so far as strep pyogenes (strep throat) caused an auto-immune attack (PANDAS: Pediatric Auto-immune Neuropsychiatric Disorder Associated with Streptococcal Infections) of my child’s brain in ways I could never have imagined.  In literally one day, I had a completely different child.  The process of grief, shock, horror, terror… is not something I can articulate – words and lists of symptoms are inadequate to capture the sudden intensity of the nightmare that becomes daily life for families with PANDAS.  I imagine those close to the events of 9-11 know what I mean.

We were one of the fortunate ones; our pediatrician diagnosed her barely a month into her first severe exacerbation and has been a tireless advocate with specialists.  She has a severe case, compounded by an immune deficiency and a great susceptibility to strep infections.

I helped my best friend recover from cancer surgery.  Thankfully, she is doing well now.

I faced one critic after another who wanted to label these changes a behavior problem and discipline her more and more stringently.  While I can see how this mistake is made given the brain involvement, discipline will not correct PANDAS any more than it will Influenza or Chicken Pox… or yes, even Strep Throat or Scarlet Fever!   This is not to suggest that we sit by and do nothing.  We must address the underlying infection and auto-immune process and I believe, support recovery through counseling that includes Exposure Response Prevention to provide our children with tools to better manage exacerbations.

I had to stop working and withdraw from school … first, to focus on my husband, then to recover my own health, then to care for her.  I started to wonder why I returned to school to become a nurse for such a short lived career!

She had to stop attending school last year… by God’s grace, she recovered enough to complete her core classes and finish the year on the honor roll.  Given where she was last Christmas, this is nothing short of a miracle!

 

10 years… so much changed.

I stopped planning my life.  I started living day to day, moment to moment, in my own terror of losing my precious child, fighting with everything in me to learn about her poorly understood condition and save her.  I spent more time researching on Medline in just those early weeks than I did in my entire time in Nursing school.

We had to travel to get help for her as medical specialists are few and far between for this condition… the expenses have been great and cover a broad category of losses.

The rewards… greater still as I watch her recover in endless gratitude!  We’re working to send her back to school this year on a modified schedule with a late start…. the brain takes a very long time to heal.  I watch our nation recover and rebuild and am filled with pride… I see her returning to the personality I knew before PANDAS came to live in our home and I am filled with thanks… and frankly, sometimes think I might break down from the sheer intensity of emotion born of this crisis.

10 years.  So much has happened & so much has changed.

My daughter is in middle school now and thankfully, recovering.  My step-daughter is half way through graduate school and student teaching a class at the college she graduated from only a little over a year ago.  Both girls are good students and wonderful daughters.  My husband is happier in his work now…. and me?

I hope I have given myself up to whatever God leads me to do, rather than my own planning… but, have I become unintentional in my life?  Do I no longer plan enough?  My focus has changed from my educational and career goals that were once so important to me, to reaching out to other families struggling with PANDAS.  I designed a PANDAS-PITAND Awareness Ribbon and founded an organization to support research:  PANDAS-PITAND Awareness & Research Support.  PITAND is Pediatric Infection Triggered Auto-immune Neuropsychiatric Disorders… it’s not only strep that can cause this relentless auto-immune attack.  I co-admin a support group on Facebook for Parents of Kids with PANDAS-PITAND (PANS).  PANS is Pediatric Acute Neurological Syndrome… the new name for these conditions.  Mostly, it has become my life’s work to advocate for my daughter.

 

As we remember those lost on 9-11, it’s hard not to see the parallels in my own life.  I can’t turn off the memories of what this day, 10 years ago held, any more than I can turn off what has taken place during the last 10 years in my own life.  I am unable to ignore the irony of how things can be so completely calm and peaceful… and suddenly, everything changes.  Nothing is certain anymore.  An intensely painful and challenging time, no question.

 

Yet… there is hope.

Children of 9-11 are growing up… they will never forget, but they are moving forward and they will be positive forces in our world.  Lower Manhattan is healing and rebuilding.

My husband, I and my daughter are all healing and our health is improving… we will never forget, but we are moving forward and I pray God will use us also, to be positive forces in the world.

Yet, there is so much more to be done.  On a global and national level, there is peace to be made with our history surrounding this day.  On a personal level, there are many goals I have that are not yet complete.

10 years…. what will we do with the next 10 years?  It all begins in much the same way as 10 years ago… with one day.  As I seek God, I ask for guidance in how to spend the gift of it.

Enter your email address to subscribe to this blog and receive notifications (instant, daily, weekly or never) of new posts by email.

Join 70 other followers

Blog Stats

  • 31,895 hits
%d bloggers like this: