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.

State academic tests

As of today, Faith has completed all of her state testing for 7th grade. Although she missed an enormous amount of content this year due to hospitalizations, IVIG infusions, medical appointments, etc as she battles PANDAS, we have worked very hard for her to learn the content, even as she missed about half the year. Thankfully, God has blessed Faith with a strong desire to learn & succeed and she’s worked very hard to master the material.

Thank you for all your prayers for her; they’re deeply appreciated! She passed proficient in all subjects, and even passed advanced in English… stunning, given how far behind she was. God is so good!!! Eighth grade, here we come!!! Faith is glad to have this year completed & behind her… we hope to give her some hard earned down time soon. Take that, PANDAS! You will never have her!

She is continuing to have severe headaches following her IVIG infusions. This one has lasted three weeks… constant pain rated at 8-10. We see her PANDAS specialist Thursday; please pray for wisdom and guidance for her entire medical team and us, as we seek solutions to regain health and reduce these side effects. NIMH indicates that once a child has had three exacerbations, PANDAS-PITAND becomes chronic. This year has been her third. We continue to trust that we are in God’s hands, as we seek any and all solutions to reclaim her health.

I also now have a teenager, but we’ve been too busy to post about that. I’ll try to update & posts pics soon.

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

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.

 

 

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 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?

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