10th IVIG infusion … 3rd & final day

It’s been a long week … construction right outside our window here, cut her rate in half… helped a lot with headache, but took hours longer to run. I anticipate it will take even longer today.
Headache started spiking as she went to bed … hate to wake her. I’m feeling drained & weary from all the traveling … need rest. Hubby also working very long hours. We’re all exhausted. We’ll be home tonight & praying it’s a quiet weekend for all of us.
Faith is in a strong push to complete half a year of missed content (due to illnesses) and take state tests, starting next week; I’m overseeing that and helping her through it. Please pray she is well enough to do this.
Please pray for us… for stamina, good spirits, good rest and peace… and for all these issues to resolve smoothly.
UPDATE:  Infusion is running, headache at 7-8 (I had her nurse give an anti-inflammatory, hoping that will help as nothing else is helping), we will only go up to half of max rate today, which we hope will help with the several days of post-infusion side effects (severe headaches & vomiting) she has been having.  Here’s a pic of today – PANDAS girls can change the world!!!  All PANDAS-PITAND boys & girls can… and I believe, will change the world!!!  These children are amazing & have enormous  intelligence, tenacity and courage!!

IVIG # 10 - PANDAS girls can change the world!

IVIG # 10 – PANDAS girls can change the world!

Blessings

Today, I am so deeply thankful for the blessing and gift that honored me with the most cherished and important role of my life: Mommy! ♥  Faith, I love you and treasure you, my precious daughter and I admire your courage and tenacity.  I am so thankful and proud to be your Mom!

Faith's Christening

Faith’s Christening

Happy Mother’s Day to my mom (another blessing in my life!) and all the moms reading this! ♥

It’s certainly been a hectic couple of weeks around here!  What’s new, right?

Last weekend, we celebrated our eldest’s (my stepdaughter) graduation with a Master’s degree in Biology, focus on Biomedical Sciences.  She’ll be completing her Thesis this summer and anticipates defending it by August.  She’s worked very hard these last couple of years and we are so very proud of her!  Great job, Hope & all our Congratulations and Best Wishes!!!  We love you!!

Hope's Master's Graduation

Hope’s Master’s Graduation

Hope's Master's Graduation Reception

Hope’s Master’s Graduation Reception

Meet the adult female Lone Star Tick Faith found on herself the next day:

Female Lone Star Tick

Female Lone Star Tick

Before my fellow PANDAS-PITAND moms (who know all too well that tick-borne diseases are known infectious triggers for PANDAS-PITAND… and very difficult to eradicate, especially if not caught early) suffer heart failure at the sight of that creepy pic… and the knowledge that testing Faith would likely be unreliable due to her immune deficiency and her ongoing IVIG infusions (ask if you want more technical info about the reasons for this; I’m assuming the non-medical folks are not as interested as me, the nurse), I’ll assure you that we continue to work with her medical team on this and she is being treated for tick-borne infections as a precaution.  Still, yes, sigh… another worry… and not one I take lightly as I know far too much about the implications.  Thankfully, she found it very quickly and it was barely starting to imbed.  Thus, the risk is lower.  However, it’s still there and given her complex medical case, we don’t take chances.  We treat.  Please pray any potential infections will be quickly resolved and eliminated.

This past weekend, we celebrated a nephew’s graduation from college with a degree in Business.  He too, has worked very hard and we are so proud of him! Here’s a photo of most of us present at the graduation.

Graduation - Large Group

Graduation – Large Group

Faith has IVIG # 10 this week.  We’ve been so blessed the last several years to be a part of this amazing ministry and dance group.  Dance?  Yes, we dance… but the focus is on mentoring children to become disciples and God is doing amazing things through it!  We bumped the date of the infusion to Tuesday, instead of Monday so she would be able to participate in Worship Dance on Monday evening just before we head down for her infusion.  If you’re local and want to see the recital, give me a call and I’ll fill you in on the details.  Wherever you are, we appreciate your prayers for this infusion and that any side effects will be minimal as she continues to battle severe headaches and vomiting in the days following the infusions this year.

Faith continues to press forward, working very hard to complete her academic load for 7th grade.  Due to being so sick the last two years, she has missed a great deal of content.  Admin has determined that she must pass the state tests in order to pass 7th grade.  She’s amazing in how self-motivated she is in her educational pursuits and she continues to press forward.  We trust she is in God’s hands here and as in the past, will do well on these state tests.  We appreciate prayer support for same… her first test is scheduled for May 23 – English.  She’ll take the Math test the following week (last week of May) and the History test the first week of June.  We’ve likely lost the Spanish 1 class she was taking for high school credit.  We’re looking into homeschooling her next year for her, for health reasons, to ensure she has the content she needs going into high school.

As most of you are well aware, the journey to reclaim Faith’s health has often been arduous.  We work to get her back to health, only to have her come down with yet another strep throat infection and we’re back to square one all over again.  Those of you who know me well, are also well aware that I firmly believe that God will heal her in His time AND that He will use these trials in our lives for good in some way.

During our recent travels, I was fortunate to hear the following song… very beautiful and though provoking and reminding me once again, that God uses ALL things for good.  Most of this song (especially the chorus) tells of the life we’ve led in this journey over the last several years in working to heal Faith.  I hope it blesses you as it did me. Lyrics follow embedded song track.


We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It’s not our home

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Lone Star Tick & End of School year

Female Lone Star Tick

Female Lone Star Tick

Faith found this on her shoulder Sunday evening.  We think she got it while walking the dog and chatting with some neighborhood kids earlier that day.  While it’s a fairly low chance that she contracted any of the tick borne diseases (this one also carries S.T.A.R.I., which stands for Southern Tick-Associated Rash Illness), neither her Pediatrician nor I were comfortable with not treating it.  Tick borne illnesses are known infectious triggers of PANDAS-PITAND illnesses and with her history, it’s not a good risk to take.  We’re treating with a few weeks of antibiotics.

Please keep her in prayer as she is also wrapping up the last few weeks of school after being quite ill this year and missing a great deal of content.  She’ll take our state-mandated tests, starting in two weeks and administration has determined this is what will determine her passing 7th grade.

We’re looking into home-school for next year, in hopes of keeping her healthier, allowing her brain time to heal from the last few years of onslaught from her immune system and improving her time for both academic and social focus.

 

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

Dear School Personnel, Community Members, Teachers, Parents and Neighbors

Please see the following link for an open letter about what it is like to live with PANDAS-PITAND or any other medical condition a child might have.

Dear School Personnel, Community Members, Teachers, Parents and Neighbors

It’s a journey none of us imagined ever taking, but have no choice as we are our child(ren)’s advocate and their future depends on us. ♥

~ 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!

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!

Easter Sunday yesterday & an upcoming week of doctor appointments…

~♥~ † ~♥~ Easter blessings! ~♥~ † ~♥~

We rose yesterday morning to a glorious celebration that Jesus is ALIVE!!!  I love Easter Sunday!  One of my favorite songs, played in my mind most of the day:

♫ He is alive!
He is alive!  ♪
♪ He is alive and I’m forgiven!  ♪
♫ Heaven’s gates are open wide! 
HE IS ALIVE!!!  ♫

We joined Faith in the Student Ministries worship room for morning worship and one part from our Associate Pastor’s message remained in my mind… how Mary (who was looking for Jesus at the tomb; she had come to anoint his body with oils) initially did not recognize Jesus when He asked her “Why are you crying?”  She turned, then assuming he was the gardener, asked if he had moved the body and to please tell her where.

Jesus spoke to her again… this time, He called her by name, “Mary”.

This time, Mary turned TOWARD Jesus and in recognition, cried out, “Teacher!”

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

How often do we look without really seeing what God is trying to show us?  How often do we call ourselves by names other than that which our Lord calls us?  Jesus never calls us by the negative names we sometimes call ourselves.  We are clothed in righteousness, forgiven because of Jesus’ sacrifice.  Such an amazing love … words cannot begin to do justice!

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

Now there was a Pharisee, a man named Nicodemus who was a member of the Jewish ruling council.  He came to Jesus at night and said, “Rabbi, we know that you are a teacher who has come from God. For no one could perform the signs you are doing if God were not with him.”

Jesus replied, “Very truly I tell you, no one can see the kingdom of God unless they are born again.”

“How can someone be born when they are old?” Nicodemus asked. “Surely they cannot enter a second time into their mother’s womb to be born!”

Jesus answered, “Very truly I tell you, no one can enter the kingdom of God unless they are born of water and the Spirit.  Flesh gives birth to flesh, but the Spirit gives birth to spirit.  You should not be surprised at my saying, ‘You must be born again.’ The wind blows wherever it pleases. You hear its sound, but you cannot tell where it comes from or where it is going. So it is with everyone born of the Spirit.”

“How can this be?” Nicodemus asked.

“You are Israel’s teacher,” said Jesus, “and do you not understand these things?  Very truly I tell you, we speak of what we know, and we testify to what we have seen, but still you people do not accept our testimony.  I have spoken to you of earthly things and you do not believe; how then will you believe if I speak of heavenly things?  No one has ever gone into heaven except the one who came from heaven—the Son of Man.  Just as Moses lifted up the snake in the wilderness, so the Son of Man must be lifted up, that everyone who believes may have eternal life in him.”

 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.  For God did not send his Son into the world to condemn the world, but to save the world through him.

John 3: 1-17

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

Once home, our Easter dinner guests arrived; we had appetizers of shrimp & ‘angel’ eggs, followed by dinner of roasted lamb, wild rice pilaf and vegetable medley.  Seeking to create something to express this amazing event we were celebrating, I made a carrot-spice pound cake with cream cheese icing and decorated in my humble visual expression of Easter Sunday.

Easter Cake 2011

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

This will be a very busy week for us.  We have several doctor appointments with specialists, two of which are out of town.  Today, we have one about an hour away with a Pediatric Infectious Disease doctor (who our Ped recommended and has an interest in PANDAS kids) about Faith’s labs for co-infections.

Tuesday, we hope to squeeze in a home-bound instruction appointment; Wednesday we will travel a couple of hours away for another appointment on Thursday … this time with a Neurologist who also has a focus working with PANDAS kids.

Friday morning, I (finally… way overdue) have an appointment with a new doc for myself.  I’m overdue for a physical and definitely need to discuss my high fasting lipid panel (it’s not that cake up there… lol… my diet is generally quite good, but genetic issues are sometimes tough to overcome) and develop a plan for getting that under control.  I’ve been exercising more the last several weeks and I am much stronger than a few years ago when my own health was in serious condition.  Friday afternoon, we meet with Faith’s Pediatrician again to evaluate the IV Rocephin, whether she has cleared the strep throat infection with that therapy and whether to continue anything via her PICC line or remove it.

Ehrlichiosis & Lyme Disease

So, our Ped called me first thing this morning… from home.

He wanted to know about the Ehrlichia/Lyme info.  I had questions about how she could have Ehrlicia and not Lyme Disease if it is a co-infection of LD.  He said he just doesn’t know if she might have LD too … yeah, me either.  He said with these diseases, it is possible to never see the tick on the child since they drop off within about 48 hours.  Thus, she could certainly have been bitten by one and we simply did not see it.

We both wondered if since she has an immune deficiency and even with over a year of confirmed strep, ASO & DNASE never rise… perhaps she can’t elevate LD titers to show that either.  Also discussed that if she does have Lyme, if that could be binding with the strep and preventing her fully clearing these strep throat infections.

Sending us to an ID at MCV for now and also said Yale is the best place (does this mean yet another trip to CT?) for Yale doctors; he knows someone who had LD, lived up there and might have some helpful info – said he’d ask him for me.

He wants to hold on pulling the PICC line and see her in his office end of next week. Expressed concern over her thoughts of self-harm/suicide and discussed the Tegretol she takes for migraines… we’re dropping it a little to see if that helps.

I had to know… I asked him about the prognosis for a child who has chronic infections such as these and if we’d ever get her back to baseline.  He assured me that he thought we would.

Thank you Lord for this angel in the darkness of this ongoing fight.  Dan and I were wondering after his call this morning: How does one thank such a concerned Ped who is so committed to helping their child? ♥

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.

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