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

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

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

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

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

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

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

PANDAS-PITAND Awareness Ribbon

Blessings

Today, I am so deeply thankful for the blessing and gift that honored me with the most cherished and important role of my life: Mommy! ♥  Faith, I love you and treasure you, my precious daughter and I admire your courage and tenacity.  I am so thankful and proud to be your Mom!

Faith's Christening

Faith’s Christening

Happy Mother’s Day to my mom (another blessing in my life!) and all the moms reading this! ♥

It’s certainly been a hectic couple of weeks around here!  What’s new, right?

Last weekend, we celebrated our eldest’s (my stepdaughter) graduation with a Master’s degree in Biology, focus on Biomedical Sciences.  She’ll be completing her Thesis this summer and anticipates defending it by August.  She’s worked very hard these last couple of years and we are so very proud of her!  Great job, Hope & all our Congratulations and Best Wishes!!!  We love you!!

Hope's Master's Graduation

Hope’s Master’s Graduation

Hope's Master's Graduation Reception

Hope’s Master’s Graduation Reception

Meet the adult female Lone Star Tick Faith found on herself the next day:

Female Lone Star Tick

Female Lone Star Tick

Before my fellow PANDAS-PITAND moms (who know all too well that tick-borne diseases are known infectious triggers for PANDAS-PITAND… and very difficult to eradicate, especially if not caught early) suffer heart failure at the sight of that creepy pic… and the knowledge that testing Faith would likely be unreliable due to her immune deficiency and her ongoing IVIG infusions (ask if you want more technical info about the reasons for this; I’m assuming the non-medical folks are not as interested as me, the nurse), I’ll assure you that we continue to work with her medical team on this and she is being treated for tick-borne infections as a precaution.  Still, yes, sigh… another worry… and not one I take lightly as I know far too much about the implications.  Thankfully, she found it very quickly and it was barely starting to imbed.  Thus, the risk is lower.  However, it’s still there and given her complex medical case, we don’t take chances.  We treat.  Please pray any potential infections will be quickly resolved and eliminated.

This past weekend, we celebrated a nephew’s graduation from college with a degree in Business.  He too, has worked very hard and we are so proud of him! Here’s a photo of most of us present at the graduation.

Graduation - Large Group

Graduation – Large Group

Faith has IVIG # 10 this week.  We’ve been so blessed the last several years to be a part of this amazing ministry and dance group.  Dance?  Yes, we dance… but the focus is on mentoring children to become disciples and God is doing amazing things through it!  We bumped the date of the infusion to Tuesday, instead of Monday so she would be able to participate in Worship Dance on Monday evening just before we head down for her infusion.  If you’re local and want to see the recital, give me a call and I’ll fill you in on the details.  Wherever you are, we appreciate your prayers for this infusion and that any side effects will be minimal as she continues to battle severe headaches and vomiting in the days following the infusions this year.

Faith continues to press forward, working very hard to complete her academic load for 7th grade.  Due to being so sick the last two years, she has missed a great deal of content.  Admin has determined that she must pass the state tests in order to pass 7th grade.  She’s amazing in how self-motivated she is in her educational pursuits and she continues to press forward.  We trust she is in God’s hands here and as in the past, will do well on these state tests.  We appreciate prayer support for same… her first test is scheduled for May 23 – English.  She’ll take the Math test the following week (last week of May) and the History test the first week of June.  We’ve likely lost the Spanish 1 class she was taking for high school credit.  We’re looking into homeschooling her next year for her, for health reasons, to ensure she has the content she needs going into high school.

As most of you are well aware, the journey to reclaim Faith’s health has often been arduous.  We work to get her back to health, only to have her come down with yet another strep throat infection and we’re back to square one all over again.  Those of you who know me well, are also well aware that I firmly believe that God will heal her in His time AND that He will use these trials in our lives for good in some way.

During our recent travels, I was fortunate to hear the following song… very beautiful and though provoking and reminding me once again, that God uses ALL things for good.  Most of this song (especially the chorus) tells of the life we’ve led in this journey over the last several years in working to heal Faith.  I hope it blesses you as it did me. Lyrics follow embedded song track.


We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It’s not our home

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

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.

 

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

Easter Sunday yesterday & an upcoming week of doctor appointments…

~♥~ † ~♥~ Easter blessings! ~♥~ † ~♥~

We rose yesterday morning to a glorious celebration that Jesus is ALIVE!!!  I love Easter Sunday!  One of my favorite songs, played in my mind most of the day:

♫ He is alive!
He is alive!  ♪
♪ He is alive and I’m forgiven!  ♪
♫ Heaven’s gates are open wide! 
HE IS ALIVE!!!  ♫

We joined Faith in the Student Ministries worship room for morning worship and one part from our Associate Pastor’s message remained in my mind… how Mary (who was looking for Jesus at the tomb; she had come to anoint his body with oils) initially did not recognize Jesus when He asked her “Why are you crying?”  She turned, then assuming he was the gardener, asked if he had moved the body and to please tell her where.

Jesus spoke to her again… this time, He called her by name, “Mary”.

This time, Mary turned TOWARD Jesus and in recognition, cried out, “Teacher!”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

How often do we look without really seeing what God is trying to show us?  How often do we call ourselves by names other than that which our Lord calls us?  Jesus never calls us by the negative names we sometimes call ourselves.  We are clothed in righteousness, forgiven because of Jesus’ sacrifice.  Such an amazing love … words cannot begin to do justice!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Now there was a Pharisee, a man named Nicodemus who was a member of the Jewish ruling council.  He came to Jesus at night and said, “Rabbi, we know that you are a teacher who has come from God. For no one could perform the signs you are doing if God were not with him.”

Jesus replied, “Very truly I tell you, no one can see the kingdom of God unless they are born again.”

“How can someone be born when they are old?” Nicodemus asked. “Surely they cannot enter a second time into their mother’s womb to be born!”

Jesus answered, “Very truly I tell you, no one can enter the kingdom of God unless they are born of water and the Spirit.  Flesh gives birth to flesh, but the Spirit gives birth to spirit.  You should not be surprised at my saying, ‘You must be born again.’ The wind blows wherever it pleases. You hear its sound, but you cannot tell where it comes from or where it is going. So it is with everyone born of the Spirit.”

“How can this be?” Nicodemus asked.

“You are Israel’s teacher,” said Jesus, “and do you not understand these things?  Very truly I tell you, we speak of what we know, and we testify to what we have seen, but still you people do not accept our testimony.  I have spoken to you of earthly things and you do not believe; how then will you believe if I speak of heavenly things?  No one has ever gone into heaven except the one who came from heaven—the Son of Man.  Just as Moses lifted up the snake in the wilderness, so the Son of Man must be lifted up, that everyone who believes may have eternal life in him.”

 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.  For God did not send his Son into the world to condemn the world, but to save the world through him.

John 3: 1-17

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Once home, our Easter dinner guests arrived; we had appetizers of shrimp & ‘angel’ eggs, followed by dinner of roasted lamb, wild rice pilaf and vegetable medley.  Seeking to create something to express this amazing event we were celebrating, I made a carrot-spice pound cake with cream cheese icing and decorated in my humble visual expression of Easter Sunday.

Easter Cake 2011

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This will be a very busy week for us.  We have several doctor appointments with specialists, two of which are out of town.  Today, we have one about an hour away with a Pediatric Infectious Disease doctor (who our Ped recommended and has an interest in PANDAS kids) about Faith’s labs for co-infections.

Tuesday, we hope to squeeze in a home-bound instruction appointment; Wednesday we will travel a couple of hours away for another appointment on Thursday … this time with a Neurologist who also has a focus working with PANDAS kids.

Friday morning, I (finally… way overdue) have an appointment with a new doc for myself.  I’m overdue for a physical and definitely need to discuss my high fasting lipid panel (it’s not that cake up there… lol… my diet is generally quite good, but genetic issues are sometimes tough to overcome) and develop a plan for getting that under control.  I’ve been exercising more the last several weeks and I am much stronger than a few years ago when my own health was in serious condition.  Friday afternoon, we meet with Faith’s Pediatrician again to evaluate the IV Rocephin, whether she has cleared the strep throat infection with that therapy and whether to continue anything via her PICC line or remove it.

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.

Sick girls…

Ok, so… Faith insisted that she had strep over the weekend.  The child has yet to be wrong (maybe one negative – perhaps a false negative as she tested positive again soon after).  You probably will not be surprised that I have rapid strep tests at home – ran one – negative.  She insisted more fervently the next day… ran another that night – negative.  By Monday, there was no question for her that the strep tests were false negatives (there is about a 20% false negative rate on those) even though I checked controls on the second one.  Brought her to see our Ped today… who ran a strep test.

Does anyone care to guess the result?

Yes, that’s right… he came back in the room and announced it is positive and yes, she IS on antibiotics – and no, it is NOT a prophylactic dose, it’s a treatment dosage that just like all the others all these months – is not working (and yes, I DO know that is a run-on sentence, just in case anyone thinks I don’t know any better).

Grrrr!!!!  Not at him… her Pediatrician is a wonderful doc she has had since early infancy, but may I just say that I HATE STREP!!!  I looked back over her records to confirm what I suspected:  following her T/A (Tonsillectomy/Adenoidectomy) in August 2009 after which we saw improvement for several months … until she caught strep again in spring 2010… it was March 5, 2010 when she started back on the antibiotics.  It has now been over a full year since she has been able to actually clear a strep test and hold it longer than… oh say, about three days… perhaps never cleared as I didn’t always take her in the day after she completed antibiotics in the beginning.  Now, I’ve seen her test positive while on antibiotics several times.  Further, she now has a few high dose IVIG’s under her belt.

So now she is on Augmentin AND Azithromycin and we’ll check in with our Ped again as we near the end of those to determine where she is on this and what to do next.

She has thrush also…. he bumped her Culterelle (adult dosage) to three times a day instead of twice and we’re looking into Kefir grains so we can make it for her since there are more probiotics if unpasteurized, so it is more potent at helping with such issues.  Diflucan too… and immune supplements – two of them, twice daily.

Immunologist here (having terrible time reaching the one in CT) says there might be something in her labs for Mycoplasma Pneumoniae and for Lyme Disease… our Ped’s office is looking into getting me the name of an LLMD (Lyme Literate Medical Doctor) we can see to help interpret those labs and if she needs Lyme treatment before further IVIG… which she may need more often than she is scheduled at this point since she is clearly not clearing strep yet.

Did I mention that I was up vomiting several times last night?  Obviously, recurrent strep makes me sick!!!  … in more ways than one!  😉  Initially, I thought that was a horrible migraine warning me of impending rain (yeah, I have a clever meteorology system built right in), but not so much now… still weak and a little dizzy from that but I’m loading up on the fluids and electrolytes… Mommy handbook says no sick days.

Sigh…. I am tired.  I think I am going to put the entire situation on hold for this evening and watch a movie with my little one.

Pray for us?  Please?

I do know God is with us; going to take a break and trust in Him.  ♥

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