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.

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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.

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

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. ♥

~ 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!

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.

Rash on Left Arm

Faith was with her dad over the weekend.  By the time they returned Sunday morning, she had a rash all over her left arm and a small area on her left chin. Her PICC line is in her left arm; that is where the Rocephin antibiotic (for the strep throat infections she’s been unable to clear for over a year and are triggering PANDAS in her case) is being infused daily… for fourteen days.

Suspecting the latex in the sleeve over her PICC line (or a chemical used in the processing – this happens with most fabrics, which is why we wash new items before wearing clothing or sleeping on sheets), I removed it, washed the rash areas with soap and water and applied a hydro-cortisone cream.  Continuing the cream, some areas improved, but the area inside her elbow and near the dressing for her PICC line remained very angry and itchy.

Our Allergist/Immunonologist checked it yesterday and thought the same thing I did.  He suggested watching her for symptoms after latex exposure as his first thought was contact dermatitis related to the latex.  He prescribed a stronger cream for her arm (as well as antihistamines around the clock) and wants to continue using the OTC Hydrocortisone on the facial areas… it’s on her cheek now too.

Unfortunately, part of the rash is under the PICC dressing, which we are unable to remove, except for cleaning and changing it once weekly, until her treatment is complete.  Thus, she’s having a rough time with that area.  The PICC line will remain in her arm at least through the end of next week…. we’re waiting for test results on Myco P and Lyme to determine if she might need further antibiotic treatment.

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