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.

The One Where I Lose My Cool

Yesterday was good.  Tonight, I'm struggling.

It's just hitting me.  The enormity of it all.  All the information to wade through.  All the opinions that seem to clash with each other.  One doc says a million supplements and diet changes.  Others say antibiotics and ibuprofen (that B's system can't tolerate).  Then there's IVIG ($$$)....repeatedly.  Or how about homeopathy.  Have you tried GAPS, or perhaps the low oxalate diet, SCD?  Silver?  Belladonna?

I listen to other PANDAS parents.  Doctors saying they don't believe in PANDAS...but here try this band aid psych med.  GI docs telling parents it must all be in their heads when their children have severe abdominal pain.  Children misdiagnosed as Tourettes and put on medications that exacerbate the PANDAS.

Bladder issues.  Food allergy?  Inflammation?  Information I read today: The basal ganglia controls the internal bladder sphincter.  PANDAS attacks the basal ganglia.  It's the SAME thing that happens to people with Parkinsons.  Wonderful.  Do you know what else is associated with Parkinsons?  Aluminum poisoning.  All I know is that my child was potty trained at 2.  He'll turn 6 on Saturday and he's not anymore.  AND THAT IS NOT OKAY!

And it feels like this world goes on and doesn't care about all these hurting kids.  They are brushed under the rug.  We numb ourselves with pop culture, food, prescription drugs, idiotic right verses left politics.   The apathy is astounding.

 Autism, ADD, ODD, Allergies, Asthma, Juvenile Type 1 diabetes, Juvenile Rheumatoid Arthritis, Eczema, GI issues, PANDAS, Childhood Schizophrenia, Food Allergies.  When did this become the norm?  When did it become okay?

Erik and I were on a radio program and the topic of how to approach all this came up.  My answer was that I'm really nice about it because people won't listen when you're angry.  The truth is, I AM angry.  I'm angry at the medical establishment that turns their back on our children.  At doctors who say "I don't believe it" when they are too proud to admit they don't understand and haven't taken the time to research.  I'm angry at our insurance policy that specifically states that it will not cover PANDAS.  I angry that the CDC recommends an untested vaccine schedule.  I'm angry that drug companies are allowed to pass off "safety tests" of individual vaccines without a true placebo.  I'm angry that this doesn't seem to bother anyone until it's too late.  I'm angry that we are perfectly okay with throwing babies and young children under the bus for the good of everyone.  I'm angry that I can't seem to hold a trivial conversation anymore.  I'm angry that there are groups of people who write hateful things about parents in my shoes because we utilize biomedical treatments.  I'm angry that we have to because the medical community has turned their backs on our children.  I'm angry that in the big scheme of things, my child doesn't matter to this world.  I'm angry that friends who once trusted me, consider me crazy now because I researched my son's condition and came to an unpopular conclusion....confirmed by lab results.  I'm sad that I have to watch babies close to us get chronic ear infections, diarrhea, eczema, allergy shiners, constipation....and I know the parents don't want to listen to anything I have to say.  So I have to watch them travel the same path.  I'm angry that my child has to endure so much.  Yes, I am ANGRY!

But I am not angry at God.  He has lifted us up and carried us through this.  We have not waded through these waters on our own strength.  A veil has been lifted from my eyes.  I am no longer oblivious to the evil in this world.  It makes me so thankful that God has prepared a place for us.  A place where there is no evil, greed, selfishness.  I am that much more thankful for His goodness and mercy.  All this ugly is a blink of an eye...but our eternity is beautiful.  I'll hang my heart on that before I turn in for the night.  

Pull up a Chair

Just A Little Update

For a month now, we've tried something new with B.  Call me paranoid, but I don't want to jinx it, so I'm not fessing up on my blog.  However, if you want to ask me in person or shoot me a message, I'll be happy to divulge that information.

Last month, I was looking through my previous posts and I realized B had only gained one pound all year.  One. Bringing his total weight to 35 lbs.  He's almost 6 and fairly tall.  He does have my small bone structure working against him, but still, one pound in a year?  He eats normally and sometimes more than I do.  He's just not absorbing his nutrients properly nor metabolizing fats sufficiently.

In just one month of this new thing we are trying, B has gained 2.5 pounds.  In the first week he gained 4!  We skipped a week while we were at Autism One and he leveled off and even lost a pound.  But we continued this new thing when we returned.  His sweet little face is filling out and he's just looking healthier.  This 'new thing' is supposed to help the body absorb nutrients.  I think it's working!

This week has been very good.  B's tics are minimal and we noticed a difference in his speech today!  He wasn't dragging out his words or taking a long time to get his sentences out.  His speech had been affected for months.  I don't know if it's decreased inflammation or the fact that his body is getting the nutrition it needs or both.  We are very happy about this!  He asked me today, "Mommy, am I talking fast?" :)

I really want to get his IgG test redone in a few months to see if some healing to his GI system has taken place. Wouldn't that be wonderful!

Hurdles

Today, we helped B's Nana with a garage sale.  Some giant hurdles were leaped with this sale.  The first: B was able to let go of some toys.  This is huge for him.  He has emotional attachments to almost everything.  He asks me take pictures of his jammies when he outgrows them.  He saves torn art projects and broken toys.  The fact that he let people walk off with his toys was a big milestone.  I was very proud.

The second hurdle: he greeted the customers.  He walked over them and explained how toys worked.  He didn't hide inside or behind me.  He drew pictures for them.  He reciprocated conversation.  He didn't stand in the front yard shouting, "Who wants to buy a picture?"  like his sister.  :)  He was polite, and helpful, and very brave.  Social situations are not usually his cup of tea.

Two women stopped by the sale with 3 children.  One little boy of about 3 or 4 kept darting from his mom, toward a certain table.  His mom took an item out of his hand, he picked it up.  She said "no" and took it from his hands again.  He began to cry loudly and picked it up.  I empathized with this mom, remembering a younger B.  I remembered when we tiptoed around every situation because it would set off a meltdown.  We were constantly trying  to be aware of the triggers.  When he would have a meltdown, nothing would calm him.  We would leave wherever we were and go to the car, or home. or somewhere B could be alone with us.  A place without a lot of people around.  It didn't hit me until those mothers and their children left that that little boy had autism.  I mentioned something to Erik and he said, "Yes, she had a 'walk for autism' shirt on."  I looked at B, sitting quietly, printing his name on a portrait of himself sitting in a race car.  I realized then and there how tall that hurdle was....and he cleared it.  From numerous meltdowns...even hourly meltdowns, to very few.  Maybe one, if that, a day.  They are shorter and milder than our days of hour long screeching over something that seemed so minute to us, but was monumental to him.  He watched that little boy, not with a puzzled look, but with a look of understanding?  wonder?  interest?   When the little boy left, I explained to B that he had autism and it made it hard for him to calm down.  B replied, "Oh.  I get it.  Mommy?  When the lights hurt my eyes....is that autism, too?"  He understands more than I ever give him credit for.

People have asked me if B has autism and I never know how to answer that question.  His official diagnosis is PANDAS.  At the conference last week, this link was cleared up for me...sort of.  Dr. Rosario Tifeletti explained PANDAS as following a pattern:  Neurotypical----->PANDAS---->PDD-NOS---->Autism.  Had we taken B to a doc who was not familiar with PANDAS, I believe he would have been diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified).  He certainly fit the mold at that point in time (before biomed).  PDD-NOS is on the autism spectrum.   We also learned that it is important to decrease the brain inflammation.....or B may regress back to PDD-NOS or further on autism spectrum.  Erik learned at another lecture that the key to reducing the inflammation is healing the gut.  It all comes back to increased intestinal permeability or "leaky gut" and it's connection to brain function and overall inflammation in the body.  I probably sound like I'm talking nonsense right now.  Goodness knows I didn't understand a lick of it until I started reading the medical journals and studies.  So, we have to heal the gut.  We have to.

These past few months, B's tics have been more severe and continuous.  His speech has been affected...which I mentioned in another post.  While he used to be quick with an answer and very articulate, it now takes him a long time to say what he wants to say.  He's still articulate, it just takes him longer and he drags out his words.  Pair these things with the bladder issues (the number 3 reported symptom of PANDAS by the way) and we've got our work cut out for us.  Heal the intestinal lining and reduce inflammation.  That's what we have to do.  We are going to embark on a new protocol for this (in conjunction with biomed...but fewer supplements).   I'm a little nervous.  I don't want to set him back, but I know we need to do something different to move us forward.  Please pray wisdom for us.  That Erik and I follow God's leading...that we hear Him loud and clear.  I've known we've needed to do something different for a while now, but I've been hesitant to change what we are doing even if it's just momentarily.  I've been waiting for the okay, but I think this time God is giving it to Erik and I need to trust him.  B's jumped some tall, tall hurdles....this is will be his biggest one yet.

The one that will more than likely be erased.

What happens when you remove dairy from your diet and then have a dairy binge?  Brain fog.  I really shouldn't be allowed to type right now.  It's that foggy.  But, the house is quiet.  The kids are at my mom's because it's that time of year again.  Time to get to Chicago and meet with old friends and gain new friends.  Hundreds of parents walking similar yet different paths.  We all get each other....nobody thinks we're crazy.  Annnnd there are so many medical lectures and advocacy lectures.  Real doctors, trail blazing doctors ready share information with us.  Autism One.

 I want to learn everything I can about PANDAS.  That is my goal for this year's conference.  Compared to other kiddos with PANDAS, I think B is doing very well, extremely well.  However, his tics have become more prevalent and an issue that we have been dealing with for quite some time has gotten worse.  I'm just going to lay it out in hopes that another parent going through the same might have an answer or may need to realize it is a PANDAS symptom.  And, when B gets a little older, I'll erase this post for his privacy.....or when this dairy high wears off and I realize that maybe this wasn't a good idea.

B has been having some problems with bladder control.   He's been toilet trained for almost 4 years, so it's kind of a bummer for him.  Bed wetting has always been an issue, but instead of small accidents, we've been having to change the sheets often.  He's been soaking through 2 layers of nighttime pull ups.  It's not uncommon for kids his age to wet the bed, so we just thought we'd wait it out.  However, now incontinence is affecting him during the day.  Strong urgency and frequency.  He's not happy about wearing a pull-up  when we travel, but just 40 minutes in the car has resulted in accidents...and this after stopping at the restrooms multiple times.  Accidents have been happening at home, too.  I posed this question on a PANDAS forum and I received a few responses.  One is that it is a bladder tic.  That would make sense considering his tics are frequent now.  The second was PANDAS attacking the nerves.  This theory scares me a little.  A few parents commented that their children were losing hearing function and diminished sight, as well.  I'm not going to dwell on that until I can talk to his doctor.  Another parent mentioned food allergies.  Well, goodness knows we've got a few of those!  I might ask his doc if he will retest B.  It's been 2 and a half years, maybe some things have changed.  Anyway, I'm really hoping this topic will come up at one of the sessions at Autism One.

We also may look for a second opinion.  A1 is a great place to meet the docs and get a feel for how they treat their patients.  While we love Dr. B and everything he's done for us, it may be good to get another perspective as far as treatment.  I feel like there is something we are missing or overlooking with B.  A new set of eyes may help.  Prayer would be greatly appreciated.  Thank you!

Now, I'm off to take some activated charcoal to counteract the effects of my dairy consumption.  I don't think I'll be doing that again anytime soon.  It makes me loooopy.  Kind of the way B would zone out after consuming milk.

Words

Selfish.
Dangerous.
Crazy.
Ignorant.

Words that have been used to describe me for ceasing vaccinations for my children.

Unfit parents.
Not based on science.
Can't accept their children for who they are.  Unloving.
Dangerous.
Munchausen moms.

Phrases used to describe biomedical treatments and the parents who choose them for their children.


These words stick.  As much as I'd like them to roll off my back, they sting.  Mostly because the people saying them cannot see my heart, or my child.  My child is nothing to them.  Just an anecdote...that's another one.  My child's life is summed up as 'anecdotal' as in "That's just anecdotal  you should trust in the science."  To me, he is my world.  We live the anecdote.  And we do have the science to back us up if people would take the time to read it.  But that is not what this post is about.  I just wanted to give you, dear readers, a glimpse of the weight I have been carrying on my shoulders.  All those heavy judgments.

B needed a new primary care doctor.  I have been hesitant to take him back to a strictly allopathic practice.  To place that trust in somebody again...I can't even tell you how hard that is.  I dragged the weight of those judgments into a family practice last week.  I wanted to interview a physician to see if she was the right fit for our family...especially for B.  I don't know why, but to get this interview, I had to fill out my health history and get weighed and all that other preliminary stuff.

The nurse and I started off on the wrong foot almost immediately.  She asked me to step on the scale and I was perplexed.  "Is this necessary?  I'm only here to speak with the physician to discuss the possibility of primary care."  She looked unamused and said, "Yes. You have to do it."  Then we went into an exam room.  She asked for my health history and asked for any medications and I didn't know the exact doses of my supplements because I didn't think I needed them for the interview.  She was short with me about that.  Then she asked if I was up to date on my vaccinations and I replied that I wasn't sure.  "You aren't sure???"  She was irritated.  I told her I wasn't going to be vaccinated further.  She paused and stared through me.  A look that threw those heavy stones of judgement all over again.  When she asked for family health history, I couldn't even concentrate anymore.  I finally said, "I just spent 15 minutes writing all of this out on the 7 pages the receptionist asked me to fill out.  Would it be easier to look there?"  I was done.  Mentally exhausted and super nervous about talking to the doctor.  The nurse took my blood pressure.  It was high.  It has never been high.  I told her it's always been low...sometimes a little too low.  She said some people get high blood pressure when they are nervous.  Ding! Ding! Ding!  I asked for a drink of water.  I knew I was about to lose it.  When she brought me the water, tears were already stinging my eyes.  I didn't know if I could face more judgement.  How was I going to talk to this doctor knowing she would disagree with the very way I'm raising my children?  Would I have to sit through a lecture on my bad parenting?

I waited...and waited...and prayed.  Prayed for God to open the heart of the physician.  Prayed that she could see my love for B and know that I have his best interest at heart.  Prayed that God would sooth my nerves enough for me to get through it.

In came the physician.  I was so nervous, I didn't know where to start, so I pulled out my phone.  On it, I saved a video of B having a tic episode.  I turned it on and said, "I would like you to see my son."  She watched the video quietly.  When it was over, I said, "That is so you know I am not a Munchausen mom."  I then shared B's medical history with her.  From vomiting after his six month vaccines, to the full body rash from the MMR.  A rash that I didn't even report because it is so drilled into us that vaccines are safe that I didn't think it was serious.  To his waking up around 18 months with the light gone from his eyes.  His whole countenance had changed.  I'd forgotten to mention his reaction to the HepB vaccine at birth.  I told her we will not be vaccinating further and our daughter will not be vaccinated either.  She listened.  She believed me.   She said that while she believes in and promotes vaccination, they do carry a risk and not every child can handle them.  She said that I am doing the right thing by protecting my children.  I am not selfish.  And nobody has the right to make me feel bad about that decision.

 I told her about the sensory issues.  How they'd practically disappeared with biomed.  I told her our biomed physician is a medical doctor with a PhD in biophysics.  That we trust him and what he has done for B.  That he is not a quack.   She listened and did not interrupt.  I explained B's health before and after biomedicine and she was not dismissive.  She said, "That is amazing."  In fact, she told me the story of one of her patients.  A mother swore her child's seizures were being caused by his amalgam fillings.  Doctors would not believe this mom.  They poo pooed the idea.  The fillings were removed and the child is seizure free. He was able to cease his seizure medication.  She told me that parents know more about their children than their doctors do.  I could not believe my ears.  Sweet music to my very soul.

I was upfront about B's supplement list.  It is long.  I told her my husband is a pharmacist and we've researched every supplement and is she okay with that.  Could we feel comfortable sharing that list with her?  She said her clinic is open to alternative treatments.  She even went on to ask me if we'd tried treating PANDAS with silver because it is a natural antibiotic.  She is open and even somewhat knowledgeable about natural medicine!   I told her my son is very thin and that it is not due to the diet.  She said, "Well, you're not big, yourself."  She went on to tell me about her grandsons.  The eldest is a skinny little thing and the younger one  almost outweighs him.

She told me that she blocked off a good chunk of time for our appointment.  She said they will continue that practice until insurance companies step in.  She said she could conduct a physical in 15 minutes, but it takes a lot longer to find out what is going on in the life of a patient.

We shook hands and as she walked out the door, she paused with a warm smile and said, "You are welcome here."


I felt the weight of the judgment I have been carrying for 2 and a half years slide off.  All the worry, the anger, the frustration.  You are selfish-----gone.  Dangerous-----gone.  Crazy-----gone.  Ignorant-----gone.

You are welcome here.

A Cherry on Top

Last night, I dreamed we were at an ice cream shop.  I walked up to the counter and ordered a gigantic chocolate sundae for B.  He looked at me with pure elation on his face and said, "Is it okay?  Can I really have this?"  I told him, "Yes."  But in the back of my mind, I was thinking, "Something is not right."  An internal panic took over.  I was torn between that delightful anticipation on his face and the sudden realization that he is allergic to that sundae.  Not just a little bit allergic, but throwing up, itchy hives, and who knows what else allergic.  Yet in my dream I was going to let him eat it.  Toss caution to the wind and let him enjoy the taste of the cold sweetness.  As if letting him eat that ice cream would be the end of the allergies.  A big "Take That!"  One act of rebellion to put the food allergies in their place.  I woke up feeling so many things: fear/happiness then empowered/defeated.  Crazy dreams.

B is getting older and we are getting a lot of questions as to the necessity of the diet, the validity of the allergens, if just one wouldn't hurt, is he thin because of the foods he eats or can not eat.  Please know that we have researched everything extensively.  We don't follow advice blindly.  We pray daily.  We've seen the positive changes in his health.  And we make sure B gets a balanced array of foods that contain fats and vitamins and minerals and calcium and iron and......

We would give B that ice cream, cake, chips, pizza, etc. if we could.  We do not follow this protocol for sympathy, attention, control....to be pain in the tush helicopter parents.  Believe me when I say that if an ice cream sundae would paint that beautiful smile on his face without causing bodily harm, I'd be the first in line asking for two scoops, whipped cream, and a cherry on top.  That ice cream represents a big dose of normalcy.  And my wouldn't normalcy taste good!

PANDAS Awareness

Too tired to update tonight, but I did want to share an excellent PANS, PANDAS, PITAND awareness video.    Please watch.  Thank you.

Perspective

"Mom, where's my Cheetos?"
"Mommy, I really miss cheese."
"When can I have pizza again?"
"When will my allergies go away?"
"Will I always have to have allergy shots?"

"I don't want a B12 shot!"

"Why do I need an epipen?  Does it hurt?"
"Am I allergic to this soap?"

Sometimes, I wonder if B feels micromanaged.  I worry that he will resent me for being so hyper vigilant about his surroundings and what he eats.  I do my best to recreate the foods he misses.  I try to let him make choices.  But there is a lot of 'no' and 'I'm sorry.'  He hears it too often.  Sometimes he just wants to fit in.  Eat what his friends are eating.  Eat the cake at the birthday party.  Have the same treats wrapped in cellophane.  Enjoy everything at the family dinner.  I'm always amazed at his will power and the way he mostly lets it roll off his back.  But lately, I've been getting the questions.  The hurt look in his eyes when I once again tell him,  "I'm sorry baby, there's _______ in that."  To him, it must feel like he is controlled.  This worries me and makes me wonder...will he one day resent me?

God gave me perspective today.  He took those worries and eased them.  He worked through B and spoke to my heart.

We met some friends at the park today.  B needed a drink and ran a little further than I was comfortable with.  There were a lot of school groups at the park today.  I ran behind him and watched from a distance as he drank water from the fountain.  When turned around and saw me, his face lit up.  He walked to me and grabbed my hand.  "Mommy?  Is there a gooder mommy than you in this world?"  My mind was thinking, "Absolutely,"  but I answered, "What do you think?"  He thought a second and said, "I don't think there is.  You are the best mommy."

B had an award ceremony tonight for AWANAS.  Each child got a sack of prizes and goodies.  His Spark leaders are awesome and filled his sack with a few fun things and about 4 Dum Dum suckers, a safe candy for him.  Candy is a rare treat at our house.  B prizes it when he gets a kind he can eat.  When we got home, he picked out a strawberry Dum Dum and said, "Would you like this one mommy?"

He is thoughtful and kind and selfless.   I may not be the goodest mommy in the world, but I am the most blessed.  Thank you God, for this little boy who teaches  me so much and for his little sister who fills our hearts with laughter.

On Top of the World

Amazing things happening here.  Amazing. :)  Two weeks ago B was very sick.  He had a high fever, was lethargic, had a sore throat, and his legs were weak.   I was dreading the worse.  The aftermath.  Usually after a sickness like this, his OCD increases terribly, his sensory issues return, and his tics are strong and ever present.  This time, the fever broke and nothing.  Nothing...Other than two days of having a hard time focusing on school work, some shaky handwriting, and a couple meltdowns.

Here we are, 2 weeks later, and B is doing better than he has all year.  He has very minimal tics..just a few a day, that's it!  His appetite is back and little man is eating a lot!  His mood is great!  We are on top of the world! I don't know what that fever did, but that seemed to be the switch that tipped him into better health.  It's been a wonderful two weeks.

We've been slowly testing foods that he had tested allergic to 3 years ago.  Starting with the lowest allergens first.  We dab a little on his skin and watch for a reaction for 15 minutes to an hour.  If there is none, we let him try a little bite.  Then a few days later, a little more of the food.  So far, he's had no reaction to apple or beef.  I'm a little on the fence with rice and would like to try a small portion again.  I think he tolerated it well.  Ghee (or clarified butter with the casein removed) was a definite no go.  We put a little on his skin and in 10 minutes, he had bright red splotches on his arm.  Dairy might be out forever.  Also, he's been able to tolerate a little corn again.  We'll try not to overdo it this time.

School is going very well.  I wanted to love the Heart of Dakota curriculum, but it just wasn't clicking for either of us.  Although we all enjoyed the Bible portion and are keeping that.  I've decided to switch to Five In A Row and we are both in love.  B has a passion for books.  Five In a Row lessons revolve around one book for 5 days.  All science, language arts, social studies, math, and art lessons are centered around the book of the week.  This week, while reading Madeline, B discovered his love of charcoal drawing.  We'd talked about the author/illustrator's use of black and white with a little color.  B has filled up an entire sketch book in one week.  This from a little boy who is very disinterested in crafts.  I guess crafts put his creativity in a box.  Every morning after breakfast, he gets out his sketchbook and creates a new world full of castles and Humpty Dumpty, and happy suns.  We also supplement with Horizons math, dolch sight words, BOB books, and Explode the Code phonics.  I'm excited for this week when we will read Lentil.  B has also been reading.  How cool is that?  He's very impressed with himself that he can read 6 BOB books and his word wall is growing.  I'm so proud of him.  And what a gift it is that I had the privilege to teach him!

I am pleasantly surprised at the difference in our house now.  The whole mood is lighter and we are enjoying our days.  I thank God for guiding us through every step of the way.  Oh, and I'm gluten free now...so maybe that contributes to our happiness?  I know I feel a lot better!  When mama feels good, we all feel good. :)

Letting Go

I wish somebody would have told me while I was pregnant with B.  You know, another mom, "Hey you know I love you and you're going to love this baby more than anything in this world.  Pray before you make any decision...and really listen to God.  Your answer may be different than everything the world is telling you.  God gives you special intuition when it comes to your child.  He is awesome like that.  Don't let anyone pressure you or scare you away from what God is telling you.  Don't second guess yourself because you are getting advice from 500 places.  Close the baby raising books, close your ears, close your eyes, and pray."

I wish I had listened to that voice, that instinct, God whispering to my soul.  I can't turn back time.  I can't undo what has been done.  For a while I thought I could make up for it by fighting.  Warn other moms.  They need to see what is happening to our children.  God gave me a huge heart for children.  When I hear of another vaccine injured child, I hurt all over again.  When I see a newborn baby, I no longer rejoice.  I pray fervently.  I clang the drum over and over and over.  So much that nobody hears the drum anymore.  Nobody wants to know, to believe, to listen.

I went to my Father in prayer this afternoon.  I cried out to him that I hate this.  I hate it.  I hate being on this side of things.  I wish I could turn back time.  I wanted guidance.  I wanted peace.  I wanted B to be healed.  I wanted answers.....see how selfish I can be?  Why, God, am I not getting any direction here?  My answer: "Daughter, you are talking at me, open my Word so I can talk to you."  Point taken.

I flipped open my Bible and ironically (okay, not ironically, God knows what he is doing) I opened to a bible study inside my Bible and the first sentence I saw was this, "Sometimes, you just have to let things go."  Hmm.. The verse above that said "Hatred stirs up dissension, but love covers over all wrongs.  Proverbs 10:12"  I have been full of hatred.  I confess that.  The momma bear in me loathes what the world is doing to our kids.  I've been dwelling on it so much, that I feel myself pulling away from God.  And my prayers have felt hollow.  I randomly opened my Bible to another page and this verse jumped out at me right away, "The end of all things is near.  Therefore be clear minded and self-controlled so that you can pray.  I Peter 4:7."   Ok, God, I'm hearing you.  How have I not noticed that verse before?  I had it underlined even, but today it struck a chord.

So, I'm letting go.  God is bigger than me.  He can handle this...and will in His own time.  I truly believe that.  I can't speed up the process.  I will still advocate for parental rights, for medical rights.  I will still help any mother (or father) who comes to me with questions.  Please parents, ask the hard questions.  Has the current vaccine schedule ever been safety tested?  If you are told yes, ask to see the test.  It doesn't exist.  Research each vaccine and it's side effects and benefits.  Research each disease and it's risks and the benefits of lifelong immunity.  Look at your family history.  Look at the safety studies and how they are conducted.  Was there a true control group?

These are things, as parents, we should all do.  I'm not passing along that info via facebook anymore.  At least not now.  Maybe not ever.  God is more powerful than facebook.  I will spend that time on my knees praying for our kids.

Moms (and Dads), I love you. You love your children more than anything in this world.  Pray before you make any decisions...and really listen to God.  Your answers may be different than everything the world is telling you.  God gives you special intuition when it comes to your children.  He is awesome like that.  Don't let anyone pressure you or scare you away from what God is telling you.  Don't second guess yourself because you are getting advice from 500 places.  Close the baby raising books, close your ears, close your eyes, and pray.