Our children need help NOW! PANS: PANDAS-PITAND Legislation

People sometimes ask me how they can help in our journey with PANDAS. Please read this and take a few minutes to write your representatives on behalf of children who desperately need medical care for these autoimmune conditions. Thank you!
Do you have a child or know a family who has been impacted by PANS: PANDAS-PITAND?

I encourage everyone to contact their state representatives in support of similar legislation!  This will only take a few minutes of your time and will do so much to help a child whose life has been turned upside down.

See this link: http://www.usa.gov/Contact/Elected.shtml to contact your representatives!  It’s imperative to share with them the devastating impact this has on children and their families and the urgent need for additional research, as well as ICD listing and insurance coverage!
Please, be clear that high dosage IVIG *has* been shown to be helpful for these autoimmune conditions and should be covered by insurance for all PANDAS-PITAND (PANS) children.  Each treatment costs $ 10,000 – $ 12,000 and many children (such as Faith) require ongoing infusions.  Often, they are not covered by insurance.
The NIMH page is clear and they are currently conducting another study to demonstrate the benefits of IVIG.  See: http://intramural.nimh.nih.gov/pdn/web.htm and refer your representatives to this page as well as this 1999 study: Therapeutic plasma exchange and intravenous immunoglobulin for obsessive compulsive disorder and tic disorders in childhood. Perlmutter, S. et al. 1999
Also, direct them to our website:  PANDAS-PITAND Awareness & Research Supportfor additional information. Review the list of symptoms on our home page.  Imagine your previously normal child suddenly becoming gripped by most, if not all of these symptoms at extreme levels of intensity.  These children know there is something very wrong with their brains… they live with sudden onset

  • phobias,
  • obsessions,
  • contamination fears,
  • anxieties,
  • separation fears,
  • school refusal (yes, even children who loved school and were in gifted classes),
  • incontinence
  • sleep difficulties, including fear of sleeping in their own room
  • academic decline & loss of previously acquired skills, especially Math
  • uncontrollable movements
  • emotional lability, including rages (even in children who previously did not have temper tantrums)
  • ADHD
  • Major Depression
  • Relentless unwanted “bad thoughts” (this can range from thoughts of harming others to thoughts of suicide)
  • compulsions
  • memory loss
  • inability to trust your own brain and body that are suddenly turning on you in dramatic ways

The lives of your family change, literally overnight and are never the same… unless you can get this monstrous auto-immune disease into remission.

I co-admin a group of hundreds of PANS: PANDAS-PITAND parents, that grows daily.  These families are in crisis, desperate to find help for their seriously ill child(ren).  There are only a handful of physicians in this country who are currently experienced in treating these conditions.  If you have any questions about these conditions, please message me through this blog or our website: PANDAS-PITAND Awareness & Research Support Contact page
Our children can’t wait.  They need help NOW!   Thank you for helping a child… please share this post.
PANDAS & PITAND Awareness Ribbon

PANDAS-PITAND Awareness Ribbon

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

Lab results on Good Friday

It’s Friday, but Sunday’s coming.

How often during these last few years it has felt like Friday.  How often we have not had answers about why things are happening the way they are, about what all this means, about where it’s all leading.

Today, we received some preliminary labs, while we continue to wait for others.  We’re starting some research on what we know so far, hoping we’ll soon learn more and considering what other labs might be important for the next time.  We’re hopeful this will bring information to help Faith heal.

Again, we don’t have answers about why, what, where… again, it’s Friday… but, Sunday’s coming.

We rejoice that even though we do not know the answers to many questions right now,  we can be confident and thankful, even joyous in the incredibly good news of Jesus, who paid our debt and rose on Sunday.

 

 

Update on Faith and new Labs

As many of you know, Faith has been having a difficult several weeks/months and declining again with PANDAS (now called PANS) symptoms.

After being on home-bound education for most of last school year, she did return to school briefly with a late start and a modified schedule.  Although she was exhausted at the end of every school day, she had a confidence I had not seen in years.  She was probably about 80-85% in remission at that point and while still episodic, had been on a positive trajectory of healing.


It didn’t last long.  By mid-October, she tested positive for Streptococcus Pyogenes (Group A strep – causes strep throat) again.  If she cleared that one, the PANDAS symptoms didn’t really decrease very well.

She was hospitalized by the end of the month for a few days due to severe migraines.  She was discharged end of October, only to be re-admitted 2 days later for migraines that would not respond to the plethora of medications they were giving her.  More tests and labs… nothing.  We learned that a cousin of hers has Celiac Disease and mentioned this to her Neuro-immunologist.  Faith was negative for CD; however, her doctor suggested we try a gluten free diet for three months to see if it helped.  As the migraines continued, we started that one week prior to Thanksgiving. Her smile seemed forced and didn’t reach her eyes…


At three weeks to the day, the migraines decreased and stopped.  She has had only one since early-mid December that did not respond to medication, but she was uneasy about an upcoming MRI at the time and it vanished soon after the scan…. which was normal.

On home-bound education again, she started pressing through her coursework, catching up on what she missed; however, as the weeks passed, she was clearly declining with a return of PANDAS symptoms.  Christmas came and went… growing into a lovely pre-teen… still, there was something about her smile and eyes that probably every PANDAS parent knows is a warning sign…

  
By late January, she was getting sicker.  She stated she felt certain she had strep throat, but it hurt too much to get a good swab.  Our Pediatrician indicated we should start the antibiotics.  We traveled back to see our Neurologist and PANDAS specialist recently for discussion about her return of symptoms.

She left the antibiotic our Pediatrician ordered in place for 2 weeks and ordered another one to follow it for another 2 weeks.  She also ordered labs to check for known infectious triggers as well as check her Immunology labs (which you may recall, were found to be deficient in October 2010).  Faith had six high dosage IVIG infusions last winter and spring before taking a break over the summer.  When we checked her labs 2 months later, her Immunology labs were in the normal range for Immunoglobulin G (the one that fights infection), although her IgA levels remained somewhat low – thankfully, this has never been so low that she can’t receive IVIg.

We just received the results of the new labs.  These labs show her IgG levels lower than they were in October 2010 and she’s been having a significant return of symptoms.  At this point, she’s unable to complete any schoolwork or meet her homebound teacher for even 30 minutes most days.  The separation anxiety is severe, at times, intense, she’s tired and although she is an honor roll student, her grades have been falling recently as she is not processing well…. and there are many other symptoms.  I have calls in to her medical team to discuss and from what I am hearing so far, it sounds as if we are heading back to the high dose IVIG infusions… at least, temporarily.  We’ll have to see what the rest of her doctors think and how she does on these.  I would estimate she’s about 60-65% remission now, but she estimates about 45-50% and says she is working very hard to hold it together and seem ‘ok’.

We appreciate prayers for her remission… and for us too as we work to help her.  The following video is from a news report in which Faith’s doctor appears, as well as two families also on this journey.  Her doctor states, “These kids are acutely aware something is wrong with their brain… These kids are very, very sick.”

Could Strep Throat Cause OCD?

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!

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