Update & prayer request

Here are our highlights:

  • Faith had another MRI today (with and without contrast), as well as an MRV.  These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain.  Her headache pain is currently rated at a 6 on a 1-10 scale.
  • Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.
  • She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others.  We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.
    • She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one.  Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.
    • Did I mention that we went Gluten Free in November… a week before Thanksgiving?  Ha!  It’s actually going quite well and we’ve had a lot of fun trying new things!  I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well.  Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden).  While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!!  Praise the Lord for this blessing!!

Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.

I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired.  I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis.  I don’t tend to excel in that area.

Please keep us all in your prayers; thank you.

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

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!

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.

 

High dose IVIG # 9

High dose IVIG # 9 for Faith’s PANDAS and Immune Deficiency will be this Mon-Weds (April 16-19).  Due to the reactions (severe headaches lasting days & sometimes unresponsive to meds, fever and vomiting) Faith had following the last two infusions, we’re changing to a different medication and running it over three days, instead of the usual two days.

We’re also getting back some of the labs we recently ran (and running more this coming week) and finding some answers there as well.  Although one never wants to have positive results to these labs, it’s good that we are tracking down the problems, so that they can be addressed and hopefully, help in her healing.  The most notable one is we’ve learned that she has diminished ability to clear certain toxins from her body due to alterations in her methylation cycle.  We’re hopeful that we are closing in on this one and anticipate it will be easily corrected…. nice that something is likely to be simple, so we’re thankful for that.

Prayers are appreciated that this one will go better and help her heal… speaking of which, please also pray for good sleep as she’s not been resting very well lately and sleep is crucial to brain healing.

Thanks so much; your prayers and support sustain us as God guides our every step.

Post-IVIG infusion complications – prayers, please

We spent 6 hours at Urgent Care this evening, due to severe headache and nausea following Faith’s high dose IVIG infusions (for P.A.N.D.A.S. and Immune Deficiency) Mon-Tues of this week.

Medications and fluids are not helping the severe headache or nausea, which has been ongoing since Tuesday evening.  Her case is very complex and challenging, with multiple diagnoses.

We are now home and hoping the meds and fluids will work as she sleeps to decrease her symptoms… if not, we’re most likely headed head back to Children’s hospital in the morning.

Please continue praying for the severe headache and nausea to subside without further intervention and for good rest… for all of us as we’ve been in and out of the hospital all week and I am beyond exhausted at this point. ♥

Could an Infection Cause Tourette’s-Like Symptoms in Teenage Girls?

This article is by far the best I have seen to date on PANS (formerly known as PANDAS-PITAND).  Dr. Jenike is also chairman of IOCDF (International OCD Foundation) Scientific Advisory Board as well as a member of its board of directors.  Dr. Jenike has been deeply involved in OCD care for decades.  One of his most significant quotes (and it’s difficult to chose as there are many) from this interview is the following:

“I used to think it was very rare, too. I’ve work on OCD my whole career, and I couldn’t figure out why no one could pin down what was going on with these kids who had had strep. Then the parents got me involved, and I learned a lot more. I now think PANS is extremely common—way, way more common than we thought. I get e-mails from parents every day whose kids have it.”

http://www.scientificamerican.com/article.cfm?id=could-infection-cause-tourettes-like-symptoms-teenage-girls

Symptoms include more than OCD and movement disorders.  Please see PANDAS-PITAND Awareness & Research Support for additional information and click Research and How to Help to find out how to help.

 

Update of last few months and request for prayer…

Faith was probably about 80-85% in remission at the end of the summer as school began.  This was such a huge improvement over where she was last winter – so very ill and we were very concerned.

She started back to school with a late start and modified schedule.  I noticed a renewed confidence in her that I’d not seen in longer than I could remember – years.  Grades were excellent, she looked much healthier.  While I knew she still had a long way to go (her PANDAS specialist estimates two years for her brain to completely heal), I was starting to feel oh, so relieved!

On October 14, she was diagnosed with another strep infection.  She had 2 weeks of antibiotics and it seems to have cleared.  However, she started having severe migraines that we could not break with medications and wound up hospitalized twice – once in October and again in early November.  They remained severe and she missed a great deal of school and fell behind in classes again.

Autumn 2011 hospitalization for severe migraines

Autumn 2011 hospitalization for severe migraines

We learned of a family member who has Celiac Disease and since removing gluten, has noted dramatic improvement in migraines.  Although she tested – for CD, on the advice of her Neuro-Immunologist, we decided on a 3 month trial of a gluten free diet for her – I’m doing the same as my migraines are also severe and frequent.  Additionally, many PANDAS kids are gluten free as it seems to help with autoimmune diseases.

At about three weeks into the GF diet, the migraines finally calmed – praise the Lord!  She does still get them occasionally, but with the exception of one of them (2-3 days pre-MRI – she was very nervous about the MRI and it calmed afterward), they are responding to first line medication now.  We’ve been doing this for about 2 months and it certainly does seem to be helping.  We’ve had several storms now in which we’ve walked out of the house and been surprised to learn it is raining – this is huge for us as we are so triggered by weather that we are more reliable than the weatherman at predicting rain within 1-2 days.  At least, we were before going GF.

Faith missed almost all social activities during the autumn as her health declined.  She signed up for Junior Cotillion this winter and we hope she’ll be able to attend all 6 events – it would be so good for her to have some fun in her life.  I was able to snap a rare photo of her as she headed to her first one when she looked the healthiest she has in a very long time.

January 14, 2012 - Hollywood Night

Junior Cotillion - Hollywood Night

Lovely, yes?  🙂  Unfortunately, this was a rare moment and she’s exhibited a rather steady decline in recent weeks.  While an episodic course is to be expected with PANDAS, she’s taken a more negative trajectory in the last several weeks and I’d estimate she’s about 65% healed at this point – wrong direction.

We’re working with our Ped and we see her specialist this week… please keep praying for wisdom for all of us and clear treatment solutions that will get her back on track to 100% remission.  Thanks so much for your prayerful support; it means more than we can articulate!

~ 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.

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