Food Fun!

Food Fun!

Please feel free to share these food pics, as long as you credit and link back to my blog page where you found the food pic.

Thanks & enjoy!

😀

Hollow bell of Trombone cake
with removable large and small mouthpieces at far, right end
Hollow bell of trombone cake
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Trombone cake 2012
Front view of husband's 2012 birthday cake
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Strawberry Cake
Hope & Faith - celebrating birthdays together
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Easter Cross Cake 2011
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Creamy Parmesan Shrimp and Okra
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Orange Cream pastry, sliced open
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Chocolate “Lasagna” Cake
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Wedding Reception cake
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Easter Cross Cake 2010
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Side view of iPod Birthday cake 2010
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Steelhead Trout
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Corned Beef Brisket, Cabbage & Carrots
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Glazed Roasted Duck a l’Orange
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Coconut Macaroons
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Lemon Ginger Shrimp & Scallops over Wilted Spinach
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~ Thankful at Thanksgiving ~

I realize I’ve been remiss posting here in the last few months.  It’s certainly not for lack of things happening!  We’ve been very busy with many crises the last several months and I would like to share some perspective on where we’ve been, where we are and where we are going.  If you’d like to enjoy some related music while reading this post, please click play to hear the song in the video below:

Since we married six years ago,

New family at wedding reception, summer 2005

New family at wedding reception, summer 2005

  • my husband’s younger brother passed away unexpectedly.
  • my husband was laid off from his job.
  • I had several bouts of illness & hypo-tension and had to withdraw from my Master’s program.
  • Over Christmas break in 2008, my then 9 year old daughter, Faith, told me she had a headache, sore throat and nausea. She had recently been treated for a strep throat infection. By the next day, my loving daughter changed dramatically into a child I did not recognize, literally overnight. The most obvious changes seemed behavioral (separation anxiety so severe that my child who had always loved school now refused to attend in extreme ways and closely followed me literally everywhere, contamination fears, extreme meltdowns & personality changes); but there were other changes, such as uncontrollable jerking of her head and limbs, sleep difficulties, throat clearing & blinking tics, academic decline, handwriting changes, hallucinations and at times, she was unable to speak.

We prayed over her, the elders of our church prayed over her, I asked for a brain scan, I stayed up countless nights researching, desperate to help her.

We are fortunate that our Pediatrician told us what he suspected only about a month into this trial: PANDAS: Pediatric Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal Infections. It’s a condition in which, for some children, following a strep throat or other infection, their immune system has a cascade of events that lead to an auto-immune process in which the antibodies attack their brain, causing inflammation and a wide array of dramatic symptoms.

It was a 9 month fight to eradicate that strep infection that involved surgery. At God’s nudging, I founded an organization to raise awareness & support research. Faith’s brain started to heal… until she caught strep again a few months later.

During her most recent severe exacerbation, her symptoms intensified further as she fought strep for 15 months. Episodes were more extreme and lasted much longer. Afterward, she usually had no memory of the episodes…

I hope she never does.

Since last Thanksgiving, this is a condensed version of what’s happened (I’m sure I’m forgetting plenty of things, but these cover most of the highlights):

  • medical crises, especially for Faith,
  • continuing to blend our step-family, with the challenges that brings for each of us,
  • unexpected deaths of several extended family/friends from May – August,
  • water damage in our home… three times… in one summer,

    Drying out from part of water damage

  • I’ve lost count of the contractors in our home and it’s not done yet,

    A demolition area

    One of the demolition areas

  • an attempted vacation wound up with hundreds of chigger bites covering me, my husband and Faith, one earthquake and a hurricane… so much for down time.
  • car accident that totaled our car,

    Totaled car

  • fought for Faith’s health against some doctors who didn’t ‘believe in’ my daughter’s disease,
  • 15 months of fighting a strep infection that causes an auto-immune cascade in which antibodies attack her brain,
  • Three inpatient hospitalizations for Faith for severe PANDAS exacerbation Christmas week last year & most recently for severe migraines in October & November, unresponsive to medications, as well as countless doctor and hospital visits in which she was not admitted,

    Christmas Eve night 2010 hospitalization, receiving first high dosage IVIG infusion

    PICC line

    Severe Migraine hospitalization

    Severe Migraine hospitalization

  • several trips to out of state medical specialists,

    Vigi, Faith's IVIG bear

    Vigi, Faith’s IVIG bear

  • most of last year on home-bound education where Faith was isolated from her life (and I was also, for the most part) as she fought PANDAS,
  • several high dosage IVIGinfusions,

    Infusion out of state

    Infusion out of state

  • loss of one income in our family as I stopped working as an RN to care for my daughter.
  • I have shared in the pain and tears of so many other parents also fighting to save their children.

~ 1st Thessalonians 5:16-18 says:

“Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

Yes, it has been a very challenging year. Yet, I am thankful… I am so thankful!!

I’m thankful for:

  • God’s abundant grace and my salvation,
  • The knowledge that these trials are temporary,
  • I am blessed with an incredible man for my husband – in so many ways and on so many levels, I am so deeply thankful for you and proud to be your wife,

    Thanksgiving Sunday

    Thanksgiving Sunday

  • We are blessed with two amazingly wonderful, daughters who seek God – Hope & Faith, we are so very thankful for you both and the blessings you bring to our lives,

    Hope & Faith - celebrating birthdays together

    Hope & Faith – celebrating birthdays together

  • Family – I’m thankful for you!  Although my mother continues to work, she has been especially helpful in supporting us with practical help in our home when she is able.
  • Friends – I’m thankful for you!
  • We are so thankful for our Pediatrician, as well as the Researchers and Doctors whose work helped to accurately diagnose and is helping to treat Faith’s strep infections and auto-immune disease,
  • Thousands of donors we will never know who donated plasma and/or blood that was made into IVIG (Intravenous Immune Globulin – approximately 10 thousand donors per infusion) for Faith’s infusions,
  • So many people who have prayed for Faith’s health, each of us individually and for our family,
  • stable employment,
  • our home,
  • God led me to design an awareness ribbon for PANDAS-PITAND, then led me to launch an organization: PPARS (PANDAS-PITAND Awareness & Research Support) to raise awareness & support the research our children so desperately need – click the link to visit PPARS website.

    PANDAS & PITAND Awareness Ribbon

    PANDAS & PITAND Awareness Ribbon

  • God also allowed me to present for PPARS at the IOCDF conference in San Diego in July, where I spoke with so many individuals and families who were either living with PANDAS-PITAND, had never heard of it and were seeking information and even adults who told stories about their sudden onset of OCDin childhood following a strep infection.

    IOCDF conference 2011 exhibit for PPARS

    IOCDF conference 2011 exhibit for PPARS

  • I have also shared in the joys and triumphs of many other parents fighting for their children… and winning back their health!

    Faith and I were chatting with another parent at the IOCDF conference 2011

    Faith and I were chatting with another parent at the IOCDF conference 2011

  • I’ve met several of the top researchers and doctors who are working very hard to help children with PANDAS-PITAND and have been so fortunate to learn so much from them!  Click each pic to learn more about them and the urgent work they are doing.

    Susan Swedo, MD, Chief of the Pediatrics and Developmental Neuropsychiatry, NIMH

    Susan Swedo, MD, Chief of the Pediatrics and Developmental Neuropsychiatry, NIMH

Madeleine W Cunningham, PhD, George Lynn Cross Research Professor, Autoimmunity and Infection  All proceeds through PPARS support Dr. Cunningham's pivotal PANDAS research

Madeleine W Cunningham, PhD, George Lynn Cross Research Professor, Autoimmunity and Infection.   

 Proceeds raised through PPARS support Dr. Cunningham’s pivotal PANDAS research.

  • God kept my husband safe during the accident and quickly provided another car,
  • Hope is healthy, thriving and growing in Grad school, working hard in student teaching and research (she loves both!) as she seeks God’s plan for her and is on the brink of launching her professional career,
  • Faith has shown remarkable courage and determination to not only be healthy but she also seeks to thrive in the face of many challenges, 
  • Although she’s had two recent hospitalizations and is catching up on missed school work, Faith is back in school this year, working hard and maintaining honor roll status in her college prep middle school program,
    First day of 7th grade - after months on homebound education

    First day of 7th grade – after months on homebound education

  • God is healing Faith and instilling in her a strength and courage that is amazing… I’m excited to see where He will lead her,

    Thanksgiving 2011

    Thanksgiving 2011

  • Hope was able to safely take two spiritually-related trips this year that have drawn her even closer to God in her Christian walk,

    Hope studying Scripture in Israel

    Hope studying Scripture in Israel

  • We live in a free country, in a beautiful area and while we may face challenges, we have what we “need”,
  • We were asked to share our story of Thanksgiving with our church family last Sunday… which perhaps turned out to be as much or more of a blessing for us as others,
  • In all the traveling we have done this year, we have all been safe,
  • We have each grown closer to God and to each other as a family, even in the midst of challenges… what a blessing & ultimately, this will matter so much more than the temporary challenges we have faced and are facing!

    Thanksgiving 2011

    Thanksgiving 2011

For these and so many more blessings, we are thankful… that God remains always in control and we can claim victory in Christ and peace in Him!  We have so much for which we are thankful and so blessed!

For so many families whose children have PANDAS-PITAND (PANS: Pediatric Acute-Onset Neuropsychiatric Syndrome) such as ours, there remains an urgent need for research.  Anyone wishing to make a tax-deductible donation to support PANDAS research, please go here for information:  PANDAS-PITAND Awareness & Research Support 

~ Jeremiah 29:11 says:

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Wishing each of you Thanksgiving blessings and a very peaceful Christmas and 2012!

~ 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.

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.  ♥

Declining further… a morning in our life.

She’s getting worse … steady decline since just over 3 weeks past her last IVIG infusion – we’re at 6 weeks post-IVIG today… and it shows.  Deeper and deeper we slide into episode after episode; confusion compounded by fear and exhaustion as the antibodies rage all out war on the basal ganglia area in her brain.  The episodes began almost first thing this morning when she woke.  They lasted for about 4 hours, if I had to estimate… one running into another.  She did not want to take her meds… “they taste bad”.  She did not want to eat breakfast (she has hypoglycemia and for stability of her blood glucose levels, needs to eat regularly)… finally got her to drink a glass of milk at breakfast and eventually got down the meds as well.

Did I mention that the rapid strep tests we ran at home last week… were negative (20% false negative rate on those)… she was feeling worse the next day.  I called our Pediatrician’s office to ask about a med she was taking that can have side effects of headache, sore throat and nausea (these and others she was having are common side effects for this med) and would he be in agreement to change it to a prn med?  His nurse, who knows her condition well, called me back.  “Can you bring her in for a strep test?”  “The ones I ran over the weekend at home were negative; but, I can if that’s what you want me to do.”

Yes, they want me to – he ran one – yes, positive…. yes, even on a treatment dosage of antibiotics twice daily for months.  … and, she has thrush again from the endless antibiotics.  He writes for two antibiotics this time -one twice daily for 14 days and another daily.  He addresses the thrush with several days treatment and bumps her adult dose of probiotics from BID to TID.  I’ve just started making Kefir (kuh-feer) at home… for those unfamiliar, it’s like a liquid yogurt.  It’s very simple to make – just add milk to the Kefir grains and wait about 24 hours –  ready to use.  I make fruit smoothies with it for her.  The homemade version has lots more healthful probiotics than the store version.  We add that to the regimen to help with any gut issues due to the never-ending antibiotics.

I’m working with insurance companies and our specialty pharmacy on several phone calls… trying to get her high dose IVIG infusions processed as quickly as possible since she is in crisis at this point… but I can’t – she is grabbing for me, panic-stricken and severe OCD again.  She is very upset, repeating over and over that she “has” to be with me and/or “has” to be hugging me …. she is within 6 inches of me at all times… if I move one step, she moves also… it’s as if we are dancing… not the kind where she dances on my feet or I twirl her around the room… this one is a cruel, horrible dance brought on by the attack on her brain that has her in this current state of panic… I could not pry the intense grip of her fingers loose from my clothing when I was on one phone call – had to remove my clothing to get into another room so I could discuss information they need to process the high dose IVIG… gave up being passed around from one department to another as her panic mounted higher and higher outside my door all the while calling for me in desperation…. and called our docs office…

I inquire… “Can we do an emergent infusion since she is behind schedule and clearly declining in exacerbation?”  Response:  “Local hospital does not run them on children.”  I provide the pertinent information to move forward with the processing of the order and get off the phone as quickly as possible having asked for help and delegated what I can to the doctor’s staff.  The office manager calls back later and leaves a message… I can go to emergency and call him via the on call system or call her cell if we need emergent care for her – she provides the number on our answering machine.

Deep breath… prayer.  Strep for over a full year during this, her second severe exacerbation – can’t clear the horrible stuff and I am a rather patient person, but at this point even I am feeling enormous strain.  I am her “safe person”… her “comfort person”.  I pray some more, take a deep breath and try to push down the growing worry, turmoil, pain and exhaustion…

~~~~~~~~~~~~~~~~~~~~~~~

“Out of the depths I cry to you, LORD; Lord, hear my voice.
Let your ears be attentive to my cry for mercy.
I wait for the LORD, my whole being waits, and in his word I put my hope.
I wait for the Lord more than watchmen wait for the morning,
more than watchmen wait for the morning.”

Psalm 130:1-2, 5-6

~~~~~~~~~~~~~~~~~~~~~~~~

I open the door to tend to her and wrap my arms around her shaking, sobbing body.  She seems to resign as she leans into me.  My heart is broken anew as I comfort and reassure her, wishing I could clone myself into one who can reassure and hold her and another who can get things done that she… me… our home and our entire family need done.  She doesn’t speak at this point… she’s often unable to during these.  I guide her gently down to the family room and encourage her to rock in the recliner – I need to get us some lunch.

She did not want to eat lunch… could not decide what she wanted… did not like any suggestions I made.  I warmed some leftovers from a recent dinner that she had devoured and asked for more… she refused it.  I pressed for another glass of milk… she refused.  I’m still on the phone during all of this – processing the IVIG approvals takes a lot of phone calls.  I suggested she could add a little vanilla extract, almond extract or maybe some Agave maple syrup – initially she just keeps shaking her head – finally, I hit pay dirt.  She takes the maple Agave, gets a straw and drinks…. praise God!!

Afterward, she didn’t remember.  She usually doesn’t.  This worries me…. I don’t know what it means for her prognosis.  We make it to her appointment with her counselor and I send her inside so I can finish a phone call with the specialty pharmacy about her infusions.  She’s calm now and appears as though nothing happened… save for her lack of a bath and brushing her hair since the sleep study Monday night.  Her counselor gets a brief update on the situation, encourages being nonchalant, calm… she wants to go to church tonight and I’m concerned about this in her condition… she does not recall the events of the morning… he discusses the issues of concern with her and encourages bringing her into the decision-making to try to help her have some sense of control as her brain is being attacked … a situation she cannot control.  I nod understanding.  I feel drained… long past exhausted, strained and stressed… weak… empty… shell-shocked…. like her beautiful brown eyes look lately.

I stop at the market on the way home to pick up something for dinner.  More phone calls about the infusions… she’s slipping again… But, she did eat dinner, thankfully.  An odd rash appeared on her face after her bath this evening…. watching that… and all the rest.  I’ll skip the rest of the episodic evening for now… this was just the first 5 hours of our day.  It’s not the sickest she’s ever been, but I feel her slipping away again and I feel helpless to protect her from her own immune system.

Please… pray for us.  I know God is listening.  In the midst of all this while she was drinking milk earlier, I posted in a PANDAS group and asked for prayer.  Parents were on it immediately… prayers around the nation… around the world.  While they were praying for us… I received a phone call from our primary insurance company at 2:21 pm.  Primary insurance has approved her infusions at this dose for four months; we apply for extension after that or if her doctor changes the dosage or frequency.

God is with us…. God carries us… God hears… God answers… God provides.  In the midst of the worst of this, I am reminded that God is ever-faithful and in control.

We still need approval from secondary insurance before she can get this next infusion… we wait.  We still need to clear the strep before we can stop this vicious cycle of relentless attacks on her basal ganglia… that’s next on the agenda after she’s fully approved for the infusions and scheduled.

Thank you for your faithful prayers… know they are heard and we deeply appreciate them.  Blessings…

Even so… she remains a leader ~ thank you, Lord!

Even in the darkness of this journey… she just got a 104 on an English test and holds straight A’s ~ wow, just WOW… brings tears to my eyes!  ♥  I’m so proud of you, Faith!!!  I know how hard you have worked, even in the midst of illness, to complete your assignments.

Thank you, Lord… for restoring enough of her for this!  🙂  Praying she continues to heal/recover… ♥

High Dose IVIG more often

As most of you are probably aware at this point, Faith improves a little more after every IVIG infusion; however, at just past three weeks from the last infusion, she starts to decline again.  Clearly, while it helps her, she is not yet stable.  Also, she continues to test positive for strep throat (as recently as Wednesday of this week), even on antibiotics and with the high dose IVIG infusions… she has not really cleared a strep infection in over a year.

I’ve been pursuing more research literature on Pubmed/Medline as well as meeting with doctors to seek help and determine what treatment plan they think would be best for her.

Our specialist (Immuno) wants to have Faith do IVIG every four weeks until she stabilizes.  At that point, he will re-evaluate and determine what she needs next.

So, this is a HUGE praise that she will finally be on a better track and we are hopeful that in time the treatment will help her.  Please keep in mind though, that this must be scheduled for the next infusion (she is already over 5 weeks since her last one at this point), so we are not looking at her being able to have this immediately.  Additionally, while repeat IVIG does WORK and help children with PANDAS, we’re talking about a child who has been sick for quite a while…. years… probably about 6 years and this is her second severe exacerbation.  We can’t anticipate healing to be immediate… it will take time – likely months… but we ARE hopeful that it WILL happen for her… at least much better than she is now… how much recovery, we do not yet know.  We continue to pray and trust that she… and we… are in God’s hands.

Thank you for your continued prayers for my sweet, precious daughter… God is listening and He is with us.  ♥

Update

Well… last week was pretty good.  On Tuesday, we went out for a belated Valentine’s Day luncheon.  Faith looked so healthy and seemed so happy that day.  I don’t remember seeing her so… well… herself in a long time.  She ate a good lunch, the waitress commented on what a mature and lovely young lady she is… yes, that’s true … and thank you for noticing in front of her; she needs to hear that these days.  ♥

March 15, 2011... belated Valentine's Day Luncheon

Go ahead… click on the photo for a better look… Doesn’t she look lovely, healthy and self assured here?  🙂  She is actually… much, much more!  What a remarkable young lady my heroine is!

March 15, 2011 - belated Valentine's Day luncheon

I’ve been trying to get her out for more exercise… looking toward getting her back to school and having the stamina to get through what will likely be a modified schedule.  Also, the fresh air and exercise seem to help her.  Sometimes we take our golden retriever with us when we go for a walk or a bike ride.  Other times, it’s just the two of us and we go all over the trails near our home; we’re blessed to live in a historic, lovely area with a lot of wildlife to enjoy!  🙂

Thursday evening… March 17, Faith even went outside and rode her bike with other kids in the neighborhood.  !!!!!  😀  Dan and I were so excited for her to see her do that and have a sort of ‘normal’ evening… it’s been so long, she’s lost so much childhood… so much has happened.  Yes, I do realize what a ‘normal’ activity it is for a child to ride bikes with the neighborhood children… never take the mundane normalcy of life for granted… it’s much more fragile than we realize.  I wanted to shout from the rooftops!!!  My heart sang for her!!!  😀

 

Riding bikes with neighborhood kids – March 2011

That was three weeks after her last HD (high dose) IVIG infusion.  That week was so encouraging!!  I started thinking about her going back to school…. I asked her homebound teacher to bring her work for the core classes we had not yet caught up and had her start working on those… was aiming toward getting her back for a modified schedule, even if it could only be 2-3 days a week in the mornings, for her core classes, realizing she would be tired and need to rest after getting up so much earlier to go to school.  (She continues to sleep until about 11 am – noon; her body needs so much rest to recuperate.)

This week; however, is not as encouraging… it’s more worrisome.  She’s not looked as well, physically.  Last night, she had a severe episode of separation anxiety and seemed “thisclose” to going into one of the full blown rage episodes she was having daily (and sometimes more often) around Christmas when she was hospitalized … which is usually complete with thrashing (think seizure-like, but it’s not a seizure), eyes rolling back and going limp afterward… scary for a parent to observe.  She hasn’t had one since just before this most recent infusion…

Suddenly, she “had” to be with me and hugging me… this translates into a grip in which I sometimes can’t get a breath… sometimes, it is the precursor to a rage episode, thrashing, limp, hallucinations… I did say I would be more candid here.  I realize it’s shocking to think of this lovely Christian honor roll student who is so thoughtful of others suddenly transforming into what I describe. This is what is so alarming about PANDAS/PITAND… the dramatic changes it can bring about in such a wonderful child!  … in ANY child who has a pre-disposition to an auto-immune condition.

Today marks 29 days post her most recent HD IVIG infusion.  The half life is 21-28 days.  I ran a rapid strep test as she’s complaining of strep symptoms and is convinced that she has strep – she is rarely wrong.  The rapid test was negative.  If her symptoms do not improve within a few days, I’ll repeat that myself or take her to our pediatrician.

She is not scheduled to return for her next infusion for four more weeks.  I’m pushing sleep this weekend… pushing rest, healthy diet, fluids, exercise… everything that helps her recover.  If no improvement by the early part of the week, we’re going to have to see our Pediatrician and/or our local Immunologist, who I am working with to determine if we might be able to manage most of her HD IVIG infusions here locally.  Are her IgG levels dropping?  Does she have a new infection?  Did the rapid strep test (they have about a 20% false negative rate with no known false positive rate) miss a strep infection (she remains on twice daily antibiotics; however, she has tested + for strep while on antibiotics and just after several times)?  Has the auto-immune process not been shut down sufficiently?  I don’t know the answers to these questions… I’m praying this is merely a temporary bump and she improves quickly.

Strep is a disconcerting bacteria for my child.

Group A beta hemolytic streptococcus

  1. Strep bacteria are able to disguise themselves to avoid detection by our immune systems
  2. Our immune systems do not initially recognize it as strep; however, the immune system does it’s job and creates a “template” of this new invader, which it knows is not ‘self’.
  3. The immune systems antibodies attack this foreign invader to destroy it.
  4. Sounds like all is working as it should, right?  Yes… except…
  5. We believe that the strep has, in these cases, disguised itself in such a way that it ‘resembles’ the molecules found on cells deep in the basal ganglia of the brain.
    1. This is known as molecular mimicry and is the trigger for the cascade of events in the auto-immune process.
    2. The basal ganglia are a complex group of interconnected components that are part of neurological loops in the brain.  They are involved in processing/regulating information from almost all surrounding cerebral structures, including motor function (and voluntary motor control), learning, memory, emotion, dopamine, sensory input/sensation, motivation (known as “paralysis of will”), inhibition and dis-inhibition (excitatory), vision, judgement, personality, speech.
  6. Thus, the immune system crosses the blood brain barrier (this part is not yet fully understood as the BBB was thought to be impermeable to this) and attacks those areas of the basal ganglia as well, causing inflammation and a myriad of complex signs and symptoms…. many of which are listed on my About PANDAS & PITAND and links page… transforming a previously sweet, intelligent, polite, mature and thoughtful child into one the parents find hard to recognize … personality-wise.

Looking back over the last few weeks, I realize while she has not had a full blown rage, thrashing, limp episode in about four weeks (and we clearly see that as improvement), she continues to have these really intense separation anxiety episodes… last night’s being probably the worst in a long time; although, she had a couple intense ones with me last week as well.

I’m sometimes so eager to have her life back to normal as she has lost so much of her childhood to PANDAS/PITAND, that I forget what I know:  brain injuries take anywhere from several months to years to heal.  It is only then that we have some idea where things stand for long-term prognosis.  When injury is on-going or recurrent, as it is in the case of PANDAS/PITAND, it becomes difficult to know when the injury stops and the healing process begins.

I’ve been sitting here staring at the computer trying to think of a more positive way to complete this post… I’m at a loss.  She is where she is at the moment.  She does have a few good hours some days, but they are in the midst of a challenging recovery.  Today has been difficult as well.  Time… Time will tell….

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!

Home from out of state doctor trip – update

We arrived home safely very late last night.  She looked really good during the infusion itself; but, clearly sinking on the way home…. nothing as bad as on the way home from the Christmas hospital admission – not even close.  But, could see her color was fading and the circles under her eyes were prominently dark.  “Flipping back the pages” is a known situation following IVIG infusions for PANDAS kids.  I did see a bit of an increase in her OCD symptoms last night.  She was determined that the locks for the tray tables on the airplane must be straight – vertical if closed and horizontal if open.  If I turned them crooked, she “had” to correct them.  I asked why and she said, “they HAVE to be straight”.  When asked about all the others on the plane (don’t worry – we were about to land 😉 ), she said she couldn’t see those.  Whew!  She was playful and smiling about it this time, but unable to leave them crooked.

She went to sleep as soon as we arrived home, without changing… good thing she was wearing comfy, soft leggings and a t-shirt.  I was not far behind her.  I had a very rough night at the hotel with very little sleep and was exhausted… hopefully, we will both be able to rest a lot today and this weekend.

Did I mention Whole Foods?  There is one near her doctor’s office – I really wish we had one near us, but we don’t, so I brought an extra bag (and bought another while there) so I could stock up on healthy, gluten free foods for her.  I bought Bob’s Red Mill gluten free flour as well… I might be able to get that locally; going to check – that would be best as I am happy to make my own things from scratch anyway.  At our first visit with her doctor last month, he indicated that we should be avoiding processed foods; fast foods, etc. and opting instead for the freshest choices, made at home, so that is what her dad and I are working toward providing for her to help heal her immune system.  Because there is so much improvement noted for PANDAS kids with dietary changes including gluten-free and casein-free and because Faith did have some food intolerance‘s as an infant and has been so very ill with this condition, and has CVID, I am also working to eliminate those for her, in addition to strictly limiting sugars/carbs due to her Reactive Hypoglycemia.  The dietary issues are certainly challenging, but as they help her immune system to heal and her health to improve, the benefits are clear.

This morning is typical of the day after her high dose IVIG infusions, she tells me that she:

  • feels more like herself
  • sore throat is gone – she has one constantly from strep infections, but the infusions are helping enormously!
  • headache is better – rating at 2-3 now – it’s usually a 4-5 on pain scale of 1-10 (10 being worst pain ever experienced)
  • nausea is non-existent this morning; that may change as day proceeds; often worse at night, but she feels well today.  🙂

That makes for a relieved and deeply thankful Mommy!!!  😀  Her doctor wants her back in eight weeks for the next infusion.

I am still exhausted and have to run to the pharmacy to pick up some scripts for her… hopefully, we’ll be able to rest more; these trips are so exhausting (probably more for Mommy than patient, but that’s ok ♥), but the result of improved health for her is completely worth the sacrifice!

We met a couple of other PANDAS families from various forums while there, as well as others having infusions at the same time.  It is always helpful to Faith to meet other children struggling with PANDAS as she often feels so alone in fighting this disease.  Meeting others helps her to connect and helps restore her self-esteem.

I’m so thankful that we FINALLY have a doctor who specializes in PANDAS, who is able to help her, after all these years!!!  I am also thankful for safe travel and all the love, concern and prayers of family and friends!!  God is soooooo good!!!  🙂 ♥♥♥

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