Peace with PANDAS

The day finally came.  I knew it would eventually.  Now, it's here.  The day B is aware that his tics make him stand out and he feels the need to hide them.

We've had a very good month.  It was one of those, 'so this is what it feels like to not worry about PANDAS' months.  Almost all the symptoms had disappeared.  It was a refreshing break for us, but especially for B.

I knew it wouldn't last forever.  It is cold and flu season, after all.  On Tuesday, his handwriting tanked.  That was our first sign.  It took him f-o-r-e-v-e-r to finish his phonics worksheet and he cried over spelling.  We shut the books and I decided it was a good day to read science and history books together and to have him practice reading aloud to me.  He enjoyed the gorgeous sunshine for the rest of the day.

I'd noticed some very frequent tics, so I asked him this morning, "Bry, I've noticed your PANDAS acting up again.  Are you okay?"  He replied that he was.  Then I asked, "What does it feel like when it acts up?  Does it make you tired?"  He replied that it didn't, but that it's been making him stick his tongue out a lot.  Then he said, "Mommy, when I need to stick my tongue out at Sparks, I go like this."  He stuck his little fact inside the collar of his shirt.  I told him that it was okay if he felt like he needed to do that, but that he shouldn't feel ashamed of his tics.  I asked him if anyone ever points them out or asks him about them.  He said they do not.  I am so thankful for the kind children at our church and in Sparks...and for the leaders who are so encouraging and accommodating!  I told him that if a friend asks him about the tics, he could tell them about PANDAS.  He said he didn't want to.  I told him that's okay.

Usually, when B gets a flair, I am on anxiety overdrive.  I worry endlessly and become emotional at the drop of the hat.  I become fearful as the what ifs repeat themselves like a broken record.  I feel angry at the world.   This time, it is different.  This time, I have peace.  I believe putting this in God's hands, knowing that He is in control, has brought me immeasurable peace.  I do catch my chest tightening a little with the all familiar stress, but it is easily brought back down with reassurance.  God has a plan for B.  Whatever that plan is, PANDAS will not stand in his way...or His way.

"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."  Jeremiah 29:11

Lately, I've been thinking about this blog and why it was started and maybe how it's veered off course.  I started it, not for attention, but for understanding.  I have seen too many  children unfairly judged, too many parents unfairly judged, by friends and family who do not understand.  I didn't want B or our family to endure that kind of judgement.  I wanted B's tender heart to shine through this blog.  I didn't realize I would turn inward so much and reflect my own heart...even when it's not pretty.  But that is the process, and if it has helped other parents to know those thoughts and feelings are normal, then I am glad.  I really do hope to write more on the amazing-ness (It's my blog, I can create words...right?) of B.  We were truly blessed when God entrusted us with this sweet little boy.

Is It Worth It?

  Two blog posts in one night!  Apparently, I'm wordy this evening.  A few months ago...yes, months, I'm a lot behind on updates....we received some lab results for B.  One for an Organic Acids Test and the other, an ELISA food panel.

The OAT looks at intestinal yeast and bacteria.  The good bugs and the bad bugs.  B's came back looking very, very good for the first time ever.  This means healing.  This is big.  Dr. B said they were the best labs he'd seen all week, perhaps even all month.  Sometimes, I know people wonder if all this hard work is worth it.  The thought has crossed my mind on more than 145 occasions.  But the proof is in the labs.

For further proof, his ELISA food panel showed the healing that has taken place.  He lost many of his IgG intolerances.  Foods that once showed up as severe culprits (level 3) are now level ones, meaning we still have to be cautious but can rotate those foods.  B can now eat beef (grass fed and organic), coconut, gluten free oats, safflower oil, watermelon, peas, and lobster.  Not that we'll be taking him out for lobster any time soon. :)  There are a few more that I can't think of off the top of my head.  The addition of coconut, beef, and oats have really opened the door for us.  I don't feel like he's deprived of much and I can replicate most recipes with a few tweaks.  In fact, I'm having more stress over my IgE tomato allergy than I am over B's diet.  Oh, and the best part, we've been able to take him to some restaurants that cater to gluten free.  Cheeseburger In Paradise is his new favorite.  Partly because he loves french fries and mostly because it has a big revolving door that he loves go round and round and round and round  walk through.

The diet and hard work have been worth it.  Every hour spent in the kitchen, every tear, every stress, every critical comment, every dollar has led to the healing that is taking place in B.

I thank you so much for praying for B....more than you will ever know.  Please keep up the prayers.  We are seeing some very good things lately.  Less tics at the top of our list.  Less tics mean less brain inflammation.  Awesome.  In Florida, they were almost nonexistent.  They  are more prevalent now that we are back home.  It makes me wonder if there is something in our environment that is contributing.  Any PANDAS parents feel free to make suggestions.  We are stumped.  Still, he's better than he's been all year.  I can't tell you how much stress that relieves in all of us.  His urinary issues seem to be better.  He's not scared to be outside because he sees a bug (our big issue this summer).  In fact, he has a new fascination with bugs.  Just today, he called me outside to watch a spider spin a web, look at a busy "family of bugs" and asked me to identify a  bug laying on the sidewalk.  His reading is taking off, his focus on schoolwork has improved, and he's less stimmy. We are so excited about his progress.

The foods B eats are healing, made from scratch, whole foods.  It's kind of ironic that people point out how sad it is that he can't have 'insert food here.'  When, in fact, he is blessed...our whole family is, to have an abundance of foods that nourish his body.  His labs reflect that and so does his sweet, happy face.

GFCF Creamy Quinoa and Bacon Chowder

1 cup quinoa
4 cups broth (any broth...we used goat and buffalo.  Chicken or beef would work as well.  Make your own!  It's good for you!)
1/4 chopped onion

2 diced carrots

1/3 c dairy free margarine (we used soy free Earth Balance.  I hate that it contains canola.  Canola and soy are evil.  If you are lucky enough to be able to have real butter, use it!)

1 lb. of turkey bacon, cut into pieces.

Season salt to taste (I think I used about 3 tsp.  This is a good recipe to use to make sure it's gluten free.)
1 cup unsweetened coconut milk or dairy free milk of your choice (Again, you can use real, whole milk if you are lucky.  Go for raw.  It's good for you!)

1/4 cup dry sherry 

1/2 cup sorghum flour or other bland gf flour
Cracked pepper to taste


If I were a real recipe writer, those ingredients would be listed in order.  However, since I am extremely abstract/random, they are listed in the order my brain recalled them. :)

1. Cook the quinoa according to package directions.  Set aside.

2. Saute the onion and carrot in the dairy free margarine until the onion is soft.  Pretend it's real butter.  You will feel better.

3. Remove from heat and stir in the flour.

4. Slowly add the flour while continuously stirring.

5. Bring the mixture to a boil for approx 5 minutes....or the time it takes you to vacuum the living room.

6. Add the turkey bacon and seasoned salt.  Simmer until bacon is cooked through.

7. Remove from heat.  Then stir in coconut milk, sherry, and cracked pepper.

8. Serve.  Listen to the wee ones tell you how much they hate soup and refuse to try it.  Warn them that they might have to go to bed hungry.  Watch their faces change as they decide the soup is good.  At least the child who loves food thinks it's good.  The child who would be perfectly happy living on a deserted island without food will at least eat it....slowly.  The adults will have seconds because it's been so long since a gluten and dairy free food tasted like real honest to goodness home cooking.  You may finish a child's bowl...sneakily.  

Waves

Exhausted.  Happy. Full of cherished memories.

We just returned from a much needed vacation.  It was one of those vacations where you wish you could stay for weeks on end.  There is one memory I hope I will always hold in my heart and my mind.

Jilly, standing with bare little toes in the ocean for the first time.  She watched a big (to her) wave rolling in.  Anticipation filled her face.  For a moment, I could see she was contemplating backing up, but instead, she held her arms out, splayed her fingers and braced herself for the wave.  She lit up with gleeful anticipation.  Wild giggles escaped her lips as the wave came closer.  Her whole little body shook with laughter as the cold wave splashed her legs.  She repeated this again and again.

I want to be like Jilly.  Facing life with laughter, enjoying the anticipation of what God has in store for us.  These three years, I have been fearful, anxious, stressed out.  As if wading into the ocean, I became weak, letting the waves knock me down, only to get up and get knocked down again.  I'm done with it.  That's not to say I won't get caught off guard and fall once in a while.  But I choose to face life with joy.

God is in control.  He is.  I can cherish every moment with my family.  I can find joy without letting PANDAS/controversy/what other people think of us/worry about the future/worry about all the world's children - overshadow every joyful moment.  This week has shown me that.  What a timely blessing it has been.

A few highlights from our vacation:

Erik's mom traveled with us.  I can't even begin to tell you how special that made our trip.  We are so very blessed.

B sang karaoke!  Shy little B.  Twice!  Can you say milestone?  Once was even a solo!

Jilly sang karaoke...alot....she dominated the mic. :)  Somebody even asked her if she wouldn't mind singing Happy Birthday to their son.  

At Disney Studios, there is a giant "spider web" in the Honey I Shrunk the Kids park.  For the first time, B went in it again and again.  He was not scared of how high it was!  This from a little guy who usually will not climb to the high part of McDonald's play structures.  I think he is conquering his fear of heights.

B came down with a fever one of the days and his tics did not increase.  In fact, he has been mostly symptom free for the entire week.  A few facial tics and head rolls....but very infrequent.  This is the best he has been all year.  All year!

B was able to eat in a restaurant 3 times!  Our horizons are expanding.

Jilly kept us laughing the entire trip.  Seriously.  I don't know where she gets her sense of humor, but she had us in stitches.

Erik was in control and kept his cool through all the vacation stresses.  He is a master vacation planner and we all reaped the benefits.  It was so much fun!

It's easy to forget the worries of life on vacation, but coming back home is a little more challenging.  For now, I've deactivated my Facebook account to focus on what brings me joy.  Two sweet little kiddos and their amazing Daddy.  Also, to spend more time in prayer and study.  I'm ashamed to admit, I let myself get so wrapped up in stress and worry, that I've neglected to spend time with my Heavenly Father who...well...has blessed us, helped us, provided for us, cared for us, and loves us.  

 I may not be as brave as little Jilly, but I'm going to stand tall, brace myself with prayer, and find joy in the waves that come rolling in.

PANDAS...What???

What is it?  Is it real?  How do you know it's not just tourettes?  Isn't there a pill for that?

I've been getting lots of questions lately and comments, articles, advice lately that shows me I've not done  a good job educating our friends and family about PANDAS.  Ideally, I'd have Erik write this.  He's the science guy.  I hope I can explain in a way that makes it easy for others to understand.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections.  In other words, if B is exposed to strep, he creates antibodies that cross the blood brain barrier, interact with neuronal tissue and attack his basal ganglia.  Basal what?  The basal ganglia is the part of the brain that is responsible for voluntary movement and behavior.  In B, it causes tics, sometimes obsessive behavior, and meltdowns over things that would seem 'trivial' to the general population.  We listened to a lecture from a top PANDAS physician who said PANDAS is being changed to PANS.  In PANS, anything that causes inflammation in the body can trigger a flare.  We've found this to be true with B.

How do you know it's not just tourettes?  When B was three, for a few weeks we noticed he was blinking his eyes a lot and started popping his shoulders.  Shortly after that, he became ill with a high fever and lethargy.  As he began to recover from this illness, it was like he changed overnight.  He woke up with frequent and strong tics.  Although sensory issues and regressions in other areas seemed to be happening over time (or at certain points in time), the tics were sudden onset.  We had an anti dnase B test run which showed his strep titers were elevated.  We run this test every 4-6 months to keep them in check.  It is important to rule out PANDAS before accepting a diagnosis and treatment for Tourettes Syndrome.  The medications used for Tourettes actually exacerbate PANDAS.

Is PANDAS real?  There seems to be a controversy in the medical community about this.  However it is recognized by the National Institute of Mental Health.  I can tell you it is very, very real.

Isn't there a pill for that?  In many cases, pills mask symptoms.  If we'd accepted a pill for tics, B's PANDAS would have gotten worse.  He would have been misdiagnosed.  We were determined to get to the bottom of the cause of the tics.  In many cases, PANDAS is treated with long term antibiotics and/or routine IVIG treatments.  For B, long term antibiotic use is a bad idea.  Antibiotic use is hard on the digestive system.  B already has issues with increased intestinal permeability.  His food intolerance list would have grown if we'd gone that route.  Food intolerances lead to more inflammation in the body which leads to greater PANS flares.  It would be never ending.  Instead, we removed offending foods to decrease inflammation, reduced allergen exposure, and he is on a supplement regimen that fights strep, bacteria, inflammation, and viruses.  Also, to fill in the gaps of the nutrition his body has a hard time absorbing.  It's more complicated than all that, but that's the shortened version.


To learn more, please visit the links provided in my previous post or visit the NIMH:  http://intramural.nimh.nih.gov/pdn/web.htm

Support

Support: To hold in position so as to keep from falling, sinking, or slipping.

Falling.
             Sinking.
                          Slipping.

PANDAS is the HARDEST thing we have ever had to go through.

When our medical decisions are questioned...When we are discussed without being present to answer questions...When assumptions are made...support is weakened and so is our strength in fighting this thing.

Trust: Firm reliance on the integrity, ability, or character of a person or thing.

We have sat through readings of B's lab results.  We have read his medical file.  We have read every study/news story/book we can get our hands on concerning PANDAS/PANS.  We have talked to parents of children with PANDAS.  We collaborate with his physicians.  TRUST us enough to know this hard work is necessary and worth it.  Yes, it is hard.  Do you know what is harder?  Raising a child whose PANDAS is not under control.

Triumph: To be victorious or successful; win.

Our chances of triumphing over PANDAS greatly decrease without trust and support.  Please, ask questions.  Please learn about this disorder before forming an opinion of us and/or our medical choices.  B needs our support.  For us to be strong, we need yours.



Learn more by clicking these links:

http://strepmonster.com/Home.html
http://pandasnetwork.org/
http://www.pandasfoundation.org/pandasfoundation/Home.html

To get a bigger picture of what B's lab results show, this graphic and descriptions under it mostly lines up with what we are seeing:
https://www.stopcallingitautism.org/autismimmunedysfunction.html

Prayer Request

Things have been a little upside down lately.  I don't know how to describe it.  Erik and I are both feeling the push to ease up a bit with B.  Decrease supplements and let him try some foods that showed up on his IgG test.  We are awaiting the results of his new food panel.  I really hope he's lost some of those sensitivities.  Reducing supplements has caused a slight regression and more choreiform movements in B.  But, this month has been less stressful for all of us without having to worry about taking them after every meal and in the morning when he wakes up.  With the regression, we realize the supplements do play a role in his healing.  We will slowly be adding them back in.

What we keep coming back to is this:  Where is the line between quality of health and quality of life?  With B, it is a tightrope.  One step in the wrong direction and we either fall on the side of regression or the side of being stressed out nonstop.  In three years, we have yet to find the middle ground.

I'm handing B over to God.  I want Him to lead and we will follow.  We know we will be moving in another direction with his care.  That may mean a new biomedical doctor, or a new method of treatment used in conjunction with the care he receives from Dr. B.  I am so thankful for everything Dr. B has done for our son.  I truly believe in the biomedical approach.  However, at this point, we are not feeling peace about continuing on this path alone.  If he regresses with the removal of supplements, how much healing has taken place?  I want to get his body to the point that it can make or absorb the very things the supplements provide.  Am I being impatient?   Every day B tics, every day he stims, every day he melts down is a day his brain is inflamed.  That scares me.  Is there something Dr. B is missing?  Something an extra pair of eyes will uncover?  B is not gaining weight again.  Every pound he gains, he loses again.  I want this addressed.  Dr. B has brought B into a better place.  For that, I will forever be grateful...but I feel like there's a another step that needs to be taken.

So, if you are reading this, I'm asking that you pray for us.  Pray for God's guidance and for us to be alert to His leading.  Also, that we will have the funds to do whatever needs to be done.  Please pray for B...for healing.  Thank you, friends.