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.

Off all antibiotics temporarily

As most of you know, Faith has been on antibiotics most of the past 15 months to try to eradicate the resistant strep throat infections she has, that lead, in her case, to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).  She’s has not attended school since mid-December & soon after a hospitalization for several days at Christmas, she started Homebound Education to keep up with her studies.  She’s worked very hard on her school work and her grades are good; I anticipate she will make honor roll and I am so proud of her!

However, the strep infections continue to resist treatment.  Thus, our pediatrician is pulling her off all antibiotics temporarily to allow them to get out of her system so that we can do a C & S (culture & sensitivity), in hopes that this will, once and for all, give us the information we need to choose the correct antibiotic(s) to eradicate this incredibly virulent Group A beta-hemolytic strep infection.

She took the last dose of her antibiotics yesterday morning.  Just as I was learning about a social situation she struggled in while at school today and we were discussing it, she declined into an episode.  This one included severe separation anxiety where she was unable to detach from me (literally and physically), unless there was a locked door between us so I could use the restroom, at which point, she became panicked (had a panic attack), tried to get through the door (in her panic to get to me) and became mute… she was able to write what she wanted to say (although with barely legible handwriting… see handwriting examples below), but could not speak for a while, and then, not clearly enough to be understood.

It lasted probably about 1/2 hour for the worst of it.  Poor child… my heart breaks for what she goes through when the antibodies attack her brain like this.  All I can do is imagine what it must be like to endure this medical condition.

Prayers for her (and the results of the strep culture that will be done this week) are especially appreciated these next few days as she is without any antibacterial support as we seek to determine our next step for that medication to eradicate these seemingly never-ending strep throat infections.  Also, she is trying to attend this final week of school (last day is Thursday, this week), making it more of a challenge for her than being home.  Hopefully, this difficult week will pay off with great results if we can gain valuable information from the C & S.

Please see below for more insight into this condition with handwriting samples of hers over the years, both when she is not afflicted with this condition and when she is.  As always, if you should have questions at any time, please feel free to comment or use the Contact Us page to email us.  Thanks for following our story; God is with us on this journey!

Second grade, spring 2008

Homework in 6th grade, Spring 2011 (taking antibiotics, but strep not yet clear)

May 8, 2011 for sample on right on card (uncertain of date for left sample on paper) Sample on right -> taking antibiotics, but not yet clear of strep infections... 2 days post IVIG infusion @ higher dosage

June 13, 2011, evening -> middle - end of episode (typical sample when episodic)

Home – infusion # 6

We returned home from my nephew’s wedding and my Granny’s memorial service this weekend and Faith had part two of infusion # 6 today.  She has about a week left on this 14 day course of Rocephin (following 2 weeks of Clindamycin), but her throat remains red and sore and she says she still feels “streppy”.  We have another appointment with a specialist this week, who is considering plasma exchange in her case as we are no longer seeing the dramatic improvements with the high dosage ivig infusions that we did in the beginning … and we’re having so much trouble eradicating the strep throat – that is another piece of the puzzle we need to resolve.

We woke this morning to a bit of a flood in the kitchen.  A broken pipe for the downstairs AC was dripping (mmm… perhaps dripping is not the best word… flowing, yes that is closer) inside the kitchen exterior wall, soaking all the wood and insulation in the wall as well as the wall itself, the subfloor wood and we’re not yet sure what else.  Fortunately, a plumber arrived fairly quickly and was able to go fetch the appropriate elbow joint to repair the pipe.

The insurance company’s restoration service is here now and working on ripping out walls & floors – the kitchen floor and family room carpet will have to be replaced as well as some personal effects sitting in that area.  Looks like we may lose functionality of our kitchen for a while.  But… even as overwhelming as the shock of the water everywhere, the damaged flooring and walls, the unbelievable mess… we are blessed that insurance will cover all but our deductible.  So, we’ll take this with the rest… one day at a time, trusting God will work everything according to His plan.

And… gosh… we sure do hope for a break and a vacation soon!  Whew!

Scholastic success!!!

Even as Faith continues to struggle with a wide array of symptoms due to her recurrent strep throat infections and PANDAS, as well as enduring heavy antibiotics and IVIG infusions, she works very hard to rise above these challenges and remain on track with her schoolwork.

She has completed most of her required schoolwork for this school year.  She still needs to complete a research paper for English and take some practice SOL’s to determine mastery of the material; however, she’s pressing through even with daily obstacles.

Her grades are as follows:

English                                             A+  (97.3)
Math 7 for 6th grade                      A+  (100)
History                                             A+ (100)
Science                                             We are awaiting final results for this class, but looks like she’ll wind up with a B.

Additionally, she has been accepted into the Advanced English class for next school year.  This places her in advanced Math and advanced English, which will be important courses as she enters and progresses through high school.

This school year has not been without cost for her.  It has not been without pain.  It has not been without hospitalizations.  It has not been without several 911 trips to the Emergency room.  It has not been without worry, doubt and fear… for all of us. Meltdowns too.

Would you indulge a mother swelling with pride for just a moment?  Faith has worked very hard in the face of extremely challenging situations.  She has persevered.  I am proud of her.  😀  Actually, I’m always proud of her, because she is mine.  I’m so impressed today at what she has accomplished.  I know at what cost she achieved this. 

Way to go, kiddo!!! 

… and, I know who carried her through this, too.

God remains in complete control of everything – He is always faithful, always powerful, always present and has carried us through this entire ordeal, as I know He will continue to do as we continue to seek healing for her.  We are not there yet and will continue to explore/pursue aggressive treatment over the summer as we remain locked in battle for wellness for her.

We also know that your love, prayers and support have played a role in helping her successfully complete this school year.

You may be familiar with the saying, “It takes a village to raise a child.”  I cannot close this post without huge thanks to all her teachers, who have been incredibly supportive this entire year.  A special thank you to her Homebound Ed teacher, who has patiently guided her through as he met with her once or twice weekly these last several months.  Our only regret is that she was unable to be *in* school this school year, with such an excellent faculty.

Thank you, each of you, for your part in her success.  Faith, I am deeply proud of you; I know you will accomplish great things… you already are!  ♥

Ehrlichiosis

Faith’s PANDAS / PITAND specialist called me today about the labs she had drawn in mid-February to determine any co-infections.  The following is a breakdown of the information he gave me today:

  • Lyme Disease = Negative
  • Mycoplasma Pneumoniae = Negative (although she does show prior exposure… perhaps a result of the pneumonia/strep she had as a toddler)
  • Ehrlichiosis = Positive for exposure, which he said means we view that as a positive and treat it

She will continue the daily antibiotics via her PICC line for the strep infections; however, she is reporting that she is not seeing an improvement in symptoms.  I have more research to do to learn if the two are inter-connected (for eradicating from the host) and perhaps making it more difficult for her to clear the strep throat infections.

While adding yet another diagnosis to the list at this point seems daunting at first; I’m relieved to finally know the results of her labs and have at least an initial treatment plan in place.

No improvement … more aggressive treatment

If you’ve been to my About PANDAS/PITAND & Links page, you’re aware that Major Depression is a symptom in approximately 36 % of cases.  In Faith’s case, this has reached an urgent level as she is having disturbing thoughts.  We discussed it at length yesterday with her counselor and are ensuring her safety.  Her medical doctors are aware.

We met with her Pediatrician this morning, who ran yet another strep test… which was yet again – positive – even on a strong dose of oral antibiotics twice daily.  😦 This means that the antibodies are still active due to the recurrent strep throat infections and that the antibodies continue to attack the basal ganglia in her brain…. for over a year now.

He ordered antibiotics via Intravenous infusion for 14 days.

After FOUR needles sticks (not her nurses fault or hers… nurse is skilled and Faith has good veins – we think the catheters are defective), we achieved an access!  Four nurses in the room working on it… counting Momma RN, me.  The staff nurses were great and Faith was soooo patient and calm – I was so proud of her!!!  The infusion ran fine.

We are due at children’s hospital first thing in the morning for PICC line placement.  Her nurse established daily infusions of the antibiotic for her.  Our doctors are consulting about her next high dose IVIG infusion.

The troubling thoughts continue at this point… we hope that in eradicating the strep infections and arresting the auto-immune process, we’ll be able to finally stop the relentless attacks by the antibodies in the basal ganglia region of her brain.

We *KNOW* that we are in God’s loving hands.  We *KNOW* that He *WILL* heal her in His time and we rely on Him.  In appreciation of your prayers, love and support…

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.  ♥

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.  ♥

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