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

ER again…

ER… I suspect Faith has phlebitis or thrombophlebitis at IV site from IVIG infusion this week. I called our Peds after hours line & was told to bring her in to be evaluated. We just got home from Children’s Hospital around 1 am due to the side effects post-infusion. All three infusion days were about 14 hours … each. She remains in severe pain (rated at 9 on 1-10 scale) from the post-infusion headache.
#canmommysecureabedandsleep

Hubby has been working extended hours for work project; thankfully, the pressure on that seems to be easing now.

Prayers requested that this won’t be serious and for plenty of restorative sleep for all of us this weekend. We walk on faith that God holds us in His hands & take things moment by moment.

UPDATE: It is phlebitis, but thankfully, there is no blood clot. Rash on torso non-issue. Simple tx should resolve phlebitis at IV site within a few days. We’ll follow up with Ped to re-check in a few days.  When Faith left the room for a few minutes, her nurse said she wanted to tell me that she noticed how elegant she is and how poised she carries herself… even with headache pain at a 9 on a 1-10 scale, she was still engaged with the ER staff and smiling… what a positive sign God gave me that healing is underway and her true personality is shining through.
#soblessed!

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!

High Dose IVIG Infusion # 10

High dose IVIG Infusion # 10 starts today (Tuesday, May 15) & will hopefully, be done by Thursday evening.  She’s in good spirits, after being able to participate in her worship dance recital last night.

We’ve been making dietary adjustments.  We removed gluten in mid-November 2011 and her migraines (that were severe, not responding to medication & were the catalyst for two back to back hospitalizations at the time) improved three weeks later… to the day.  She does still get them sometimes, but they respond to medication now.  Also, since going gluten free, we’ve lost count of how many times we’ve walked out the door and found that it’s raining.  This is of huge significance for both of us as our migraines have always been so strongly triggered by weather that I stopped checking weather years ago, since my migraines were a more reliable predictor that rain was on the way.

Because she had a dairy intolerance as an infant, I also removed dairy from her diet a few weeks ago as a trial to see if it helps – like gluten, removing dairy does help a lot of kids with neuro-immuno issues.  I also started her on daily green smoothies… and… the Blendtec Total blender (with the new Wildside jar) my husband ordered for me just arrived!!!  This is a pic of one similar to ours… and yes, we’re blending most, if not all (& more!) of the items you see in the pic in our green smoothies:

Photo from: http://www.terawarner.com/blog/2011/03/meet-our-st-pattys-green-smoothie-challenge-blendtec-winner-jean-guerini/

I was only able to use it one time before we headed to the hospital last night for her infusion today.  The blend was amazingly smooth!!  It was neat to see how much smoother than our regular blender was. What a delicious way to eat our greens & other nutrition!  The last couple of weeks, I’m seeing her slowly start to improve… she still has a way to go, but we’re thankful for all improvements, no matter how small.  🙂

I’ll try to check in later… prayers are very appreciated that this infusion will go well as she has consistently been having severe headaches (sometimes with vomiting and fever) that last for nearly a week following these infusions.

Thank you for following her story and praying for her and our family… you’re each a blessing to our family!

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

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

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!

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. ♥

STAR Test Results

My daughter’s English teacher informed me a few days ago that she would be administering the STAR Reading test on Monday (yesterday) and that she would like Faith to take the test.  It does not count toward their grade (not relevant in this case as she has a strong A in most of her classes… we don’t have final for one of them yet); but, is a placement guideline to determine on what grade level the student is reading.

An avid reader, she’s always been 2-3 years ahead of her grade on these types of tests.  Last fall; however, heading into the worst exacerbation of her life (we hope and pray she never experiences anything as severe again), her score dropped a little (I think it was grade level 8.0) from what it had been the prior year, when she was in 5th grade (I think she tested at grade level 8.3 in January of her fifth grade year).  I knew the assessment in fall 2010 (6th grade) was not accurate, but they left her at that level until she could re-test.

As it turned out, she was too ill to attend school most of the school year and simply read for pleasure at home…. like me, reading has always been one of her favorite hobbies.

She took the test and told me when she got home that she was the first one done and the test was easy.  I wasn’t sure what to make of that.  She is NOT taking antibiotics and in the midst of a PANDAS exacerbation as we pass a few days waiting to do a strep throat culture at the doctor’s office at the end of this week (Friday).  As I posted last night, she had a rough day at school, followed by a rather difficult episode that evening.  It’s clear that the antibodies are swinging into full gear as they attack her brain.  It’s difficult and painful to witness.

In any case, she told me this evening that she received the results of the STAR test she took yesterday.  Her assessment places her on a 12.1 grade level.  🙂  Yes, you read that correctly.  My ‘almost done with 6th grade’ daughter is reading on a 12.1 grade level… an increase of 4 grades since the autumn assessment and almost double her current actual grade level.

I am so proud of my precious daughter, who never ceases to amaze and inspire!  Way to go, kiddo!!

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