~ 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.

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Children’s Mental Health Awareness Day

Today is Children’s Mental Health Awareness day, in the midst of Children’s Mental Health Awareness week, which is May 1 – May 7.

Do you know the signs and symptoms of P.A.N.D.A.S. (Pediatric Auto-immune Neuropsychiatric Disorders Associated with Streptococcal Infections)?

Please view and share the following video ~ thank you!

One Step Closer, I pray…

We have received approval from our secondary insurance provider (approval from the first was received yesterday) for Faith’s IVIG infusions.

As most of you are aware, she has been having an increasingly difficult time since soon after the 3 week point post her last infusion.

The specialty pharmacy will be overnighting the medication & supplies to our home.  This formulation is a little different than the one she was receiving recently.  This will be the same one as what she received locally previously and she seemed to do better on this medication so we are hopeful we will see that continue.

The first half of this infusion will be on Friday and the second half will be administered on Monday.

Her doctor is monitoring her progress and her labs and will determine where we go from here… if any adjustments are needed and how long she will require treatment.

Our next step is to eradicate these strep throat infections… we’re working on that…

Thank you all for your prayers… God remains in control and is providing for her needs.  ♥

Facebook Awareness Ribbon page opened – please “like” us!

I have now made public my Facebook page for information about the Awareness Ribbon.  Please click the button below and “like” the newly public page to stay informed about the ribbon and how it is being utilized to raise awareness & funds for research!  Thanks!!

Healthier Easter Egg Coloring

Colored Eggs

A friend posted this on Facebook and provided the link for me to share with all of you… How to Make Your Own Homemade Easter Egg Dyes By Tony Isaacs on 03/26/2011

Coloring boiled eggs has been a longtime Easter tradition. However, many of the food dyes commonly found on grocers shelves are synthesized from petroleum derivatives and even coal tar. This year, why not provide a healthier Easter for your children by making your own safe dyed eggs and opting for healthier substitutes for most or all of the candies.

In addition, some food dyes based on natural ingredients may come from items you may not care to ingest. For example, the common red food coloring agent carminic acid comes from the dried, crushed bodies of pregnant scale insects.

Plant-based dyes for coloring Easter eggs provide a synthetic-free and bug-free alternative and their muted yet vibrant colors are far lovelier than their counterparts. Children seem to find that mashing food is also much more fun that simply dropping a tablet in a cup. As well, it is a great lesson in creativity and exploring which plant materials works in which way.

Some materials work best when they are boiled with the eggs (as noted below), and some work well made ahead and used for dipping or soaking the eggs. If you use juice, just use it undiluted. The longer you let the eggs soak, the more intense the color will be (for the boiled versions, you can remove them from the heat and allow to cool in the dye bath).

You can use your favorite egg-dying tricks here as well: Like crayons for a batik effect or rubber bands for a tie-dye effect. If you like a glossy egg, you can rub the dyed eggs with vegetable oil when they are dry.

Homemade Dyes

Red

Red-onion skins, use a lot (boil with the eggs)

Pomegranate juice

Orange

Yellow onion skins (boil with eggs)

Yellow

Lemon or orange peel (boil with the eggs)

Carrot tops (boil with the eggs)

Celery seed (boil with the eggs)

Ground cumin (boil with the eggs)

Ground turmeric (boil with the eggs)

Yellow Brown

Dill seeds (boil with the eggs)

Brown

Strong coffee

Instant coffee

Black walnut shells (boil w/eggs)

Yellow Green

Bright green apple peels (boil w/eggs)

Green

Spinach leaves (boil with the eggs)

Blue

Canned blueberries and their juice

Purple grape juice

Red cabbage leaves (boil with the eggs)

Violet Blue

Violet blossoms

Red-onion skins, less amount than you need to make red (boil with the eggs)

Lavender

Diluted purple grape juice

Violet blossoms plus squeeze of lemon (boil with the eggs)

Pink

Beets, fresh or canned

Cranberries or cranberry juice

Raspberries

Red grape juice

Other Healthy Easter Suggestions

Limit chocolates to small amounts of healthier dark chocolate. And fill your own plastic shells with healthy items such as:

  • Trail mix, mixed nuts, bagels or pretzel mix (you can also make your own trail
  • Granola or popcorn mix (choose healthier organic versions)
  • Organic cereals
  • Raisins, dried apricots or other dried fruit
  • Coins or dollar bills

You can also fill up their Easter baskets with fun non-food items that encourage their creativity.

  • Add books by children’s favorite authors, along with fun and colorful Easter-themed bookmarks.
  • Fill the basket with small stuffed animals and/or with toys your kids can use while staying active outside, such as sidewalk chalk, bubbles, balls and sporting equipment.
  • Consider stocking the basket with small gifts designed to encourage creativity in your children, such as paints, brushes, puzzles, coloring books and crayons.
  • Add various kinds of seed packets and some gardening tools so your child can plant flowers or vegetables and watch them grow. Gardening is wonderfully healthy for children and spring is the perfect time for your children to pick up gardening.

Rare Disease Day ~ PANDAS Awareness

The PANDAS/PITAND Awareness Ribbon is currently being modified.

It will be updated soon.

Please use the “CONTACT US” form or subscribe if you wish to receive notifications about this or have ideas for it’s use.

Thanks for your interest 😀

Rare Disease Day ~ PANDAS Awareness

Monday, February 28 is Rare Disease Day.  As you will see later in this post, PANDAS is much more common than most people know; however, it is believed to be grossly under-diagnosed and mis-diagnosed at this point.

Most children have strep throat infections at some point during their childhood.  For most, a prescription of antibiotics will resolve the infection and prevent complications. This is not the case for all children.  Some develop complications, one of which is PANDAS:  Pediatric Auto-immune Neuropsychiatric Disorder Associated with Streptococcus.  For more information, see my “About and Links” section by clicking it at the top of any page.

Statistics on PANDAS children:

  • Statistically speaking, Dr. Sue Swedo (Senior Investigator, NIMH) estimates 5% of the pediatric population develop PANDAS.
  • Given that there are approximately 75.6 million children in the United States alone, this represents 3,780,000 children with PANDAS in the United States alone!
  • Given a world population estimated in recent years of 2.2 billion, this number represents 110,000,000 children with PANDAS in the world!

Unfortunately, it is extremely under-diagnosed or mis-diagnosed as many of the psychiatric presentations are confused with psychiatric conditions and children are medicated with psych drugs, rather than receiving the treatment they require to eradicate the infections and help the immune system to heal by de-activating the gene that was initially activated, starting the cascade of events in the auto-immune process.

For these children, its not “just strep”.  Children’s lives are turned completely upside down… and families as well, as a result.  My child became someone whose personality I did not recognize… literally overnight!

Know the signs ~ taken from one of our doctors office cards:

You DON’T need to have a diagnosed Strep infection to have PANDAS.

  • Obsessions/preoccupations/fixed ideas/unwanted feelings/Anxiety
  • Compulsions
  • Choreiform movements
  • Emotional Lability/Rages/Fight or Flight behavior
  • Personality changes
  • Bedtime fears/rituals
  • Separation anxiety
  • Oppositional Defiant Disorder
  • Tactile/sensory defensiveness
  • ADHD
  • Motor and/or vocal tics
  • Marked deterioration in handwriting and/or math skills
  • Daytime urinary frequency
  • Anorexia/fear of choking/being poisoned/contamination fears/fear of throwing up

If you have a child or know anyone who has a child with these symptoms (and who has been exposed to or might have a history of Strep Throat, Mycoplasma or Lyme Disease, please see a doctor who is able to treat the child and restore wellness – remember, you do NOT have to have a diagnosed Strep infection to have PANDAS.  Also, feel free to provide them with the link to this blog as I am happy to do whatever I can to help children and families with this condition!

For those who want to help, please see my How Can I Help? post. Thanks so much for your support in increasing awareness of this devastating disease!

Hopeful Parents

Someone shared this link with a group of PANDAS parents.  It resonated for most of us.  While it was written about ASD (Autism Spectrum Disorder), one can easily substitute PANDAS for every instance of ASD.

If you are the parents of a child with PANDAS or any other special needs condition, and are experiencing several symptoms on the list mentioned, know this.

  • You are NOT a bad parent.
  • This is NOT your fault; your child has a medical autoimmune condition.
  • You are NOT alone.
  • You are NOT weak.  (As the post mentions, you are a reasonable person, who has been dealing with an unreasonable situation, for an unreasonable amount of time, without reasonable support.)
  • There IS hope!  Contact your physician and/or counselor.  Make an appointment.  Bring the list of PTSD symptoms with you, marking the ones that are applicable to you.
    • I know all too well that you are reluctant to do so, given the history of being ignored, judged, dismissed, etc. with your child’s condition.
    • Go and discuss it anyway.  You need to be as healthy as possible to get through this journey.

Hopeful Parents – ASD & PTSD

Good evening tonight & upcoming labs…

After antibiotic increase starting Friday, Faith came home tonight saying she felt a little better and did not have to work so hard to hold it together at her dad’s this weekend and thus, she said she was not as tired as she usually is when she gets home from visitation. NO episode tonight, Praise God!!! :~)) A short lived phase of OCD and needed some hugs, but nothing major. She seemed happy and calm this evening; went to sleep easier at bedtime too.
Praying she has a good week.
She’ll have another battery of labs run this week… some are the LFT and porphyrins they have been watching since they’ve been elevated at her Christmas admission, most others are for co-infections often seen in kids with PANDAS /PITAND : Mycoplasma (often causes childhood pneumonia… she had @ pre-school age), strep titers, Lyme IGeneX panel and her Immune globulin levels to prep for next IVIG.

Antibiotic increase for recent increase in symptoms

Her pediatrician increased her antibiotic and she will be on it long term per our specialist. I’m hopeful that this will decrease her recent increase in symptoms.

I hope you dance…

Faith and I have been involved in a wonderful worship dance ministry for the last several years. Unfortunately, due to her PANDAS medical condition, she has been unable to participate in several months. Classes began last night for spring semester and although I initially had decided not to participate until she improves, some schedule changes made it possible for me to re-consider.

The hip-hop class she most recently attended was meeting immediately after and she wanted to stay for it.

Worship Dance Hip Hop lineup, Spring 2010

Worship Dance Hip Hop in action, Spring 2010

Sigh…what to do?  I admit I was worried, but decided to trust God was in control.

The other dancers were so happy to see her and several of them hugged her, including the instructor. She enjoyed class so much, did well with the choreography and … did not have a major episode that evening!! Praise God!!! I can’t say the evening went perfectly, but nothing like the major episodes we’ve seen so many times. It was so good for her to be back at worship dance. As for future classes, we’ll have to see how she does health-wise, but for today, while she rests, I am so thankful that she was able to attend that one class! :~)) ♥ … and in her future… I hope she will dance with joy at God’s healing touch! ♥

Denise & Faith - Worship Dance Recital, Spring 2009

Worship Dance Hip Hop team, Spring 2010

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