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!

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.

The Brave Dr. Blaylock Explains it All

This is just a quick post.  I have a hard time relaying what happened to B and what his condition is.  What makes perfect sense in the DAN doctor's office doesn't seem to make sense when I try to describe it.  Tonight, Erik stumbled upon this and it fits B (well except for the schizophrenia) like a glove.  Thank you Dr. Blaylock.  You will forever be my favorite neurologist!

http://www.youtube.com/watch?v=xYuYramYdAs&feature=player_embedded

For my family who are still trying to figure out the quirks of the internet, click on the link above ;)

The Kindness of a Stranger

It's sunny.  It's warm.  Mickey Mouse is everywhere.  We are on vacation and having a blast!  We spent one day at Hollywood Studios and one exhausting fun filled day at Magic Kingdom.  Tomorrow we will revisit Magic Kingdom.  Jilly will be happy.  Today, we relaxed at the resort and Jilly could be overheard saying, "I want my Country Bears.  I want my teacups."  In her sleep, she sat up and said, "I see Mickey Mouse!  I see Daisy!  I see Goofy!  I see Monsters, Inc.!  I see Handy Bandy (Manny)!  I see Buzz Lightyear!"  Then she promptly drifted back to sleep.  B absolutely loved the Buzz Lightyear ride.  He rode it at least 5 times.  His other favorites were the Flying Dumbo ride and the Spinning Teacups.  It's hard to believe this is the same little boy that last year couldn't swing without freaking out.  He's come a long way!

We're also on vacation from the rotation diet.  He's  not eating anything he's allergic to, but he gets to choose his snacks and meals.  And he's eating...a lot!  I think we'll stick with the rotation when we get back home, but have rotation vacations once in a great while.  I'm hoping he doesn't develop new allergies because of this, but I think for the sake of our (his and mine) sanity, this is greatly needed.

Have you ever met a person who goes above and beyond to help you out?  I'm going to create a blog post soon about these wonderful people in our lives.  For now, I'd like to write about Chef Ray.  A few nights ago, we made reservations to Planet Hollywood.  Erik called the restaurant and told them about B's food allergies on the off chance there might be something on the menu B could eat.  This was kind of a long shot.  Ninety-nine percent of the time we bring B's food to restaurants.  Chef Ray got on the phone and asked for B's allergy list.

The next evening, we arrived at Planet Hollywood.  The kids were grumpy and tired.  A full day of Disney seems to have that effect.  It was very late.  When we were finally seated, Chef Ray came to our table.  He looked B in the eye and said, "What do you like to eat?"  It may sound like an ordinary question, but for B it's not one he hears often.  Silly me, I tried to answer it for him.  "He likes chicken."  Then B said, "Mommy, I don't like chicken."  Chef Ray asked if he liked french fries and B's whole face lit up, "Yeah!  French Fries!"
Then that wonderful chef prepared B a meal of turkey roll ups, fancy sliced strawberries, and french fries from scratch with an oil B could tolerate.  B was ecstatic!  He forgot about being grumpy and tired.  As he ate, he said, "I LOVE this place!  It's my favorite!"  I was so very touched by this man's thoughtfulness.  Although the restaurant was crazy busy, he took the time to make the evening special for B.  His kindness created a memory for my boy that he will not soon forget.

Screeeeeech!

I'd been cruisin' along this allergy free cooking highway.  I'd finally hit my groove.  Things were looking up.  I found foods B likes and will eat.  Then SCREEEEEECH!  There's definitely a bump in the road.  B decides he doesn't like the food he's eating.  Spaghetti? No thanks.  Tacos?  Eh.  Buffalo hotdog?  Nope.  Muffin? Not hungry.  Pancake?  What else can I have?

Because B's foods have to be rotated, there's not a lot of wiggle room when it comes to cooking.  If I put garlic, onions, potatoes, tomatoes, and oregano in one meal, I have nothing to work with for the next 3 days.  I thought I'd switch the rotation up a little and came up with a different recipe tonight.  B took a bite. "Mmm!  This is good."  Another bite, then another, then one more.  "Mom, what's this green thing (avocado) in here?"  I did what any self respecting mother would do and LIED THROUGH MY TEETH.  "It's uh.....a green bean, that I uh put in the blender so you wouldn't have to look at it."  Then I pasted my most convincing 'you really do like it' smile on my face.  He put the burrito down.  He took no more bites. Sigh.  Then I told him the truth, sort of.  "Actually, B, it was an avocado.  I thought you were talking about the green beans (there were no green beans), but you were talking about the avocado.  Let me get you a new burrito."  I made him a new one.  He took two bites.  He was done.

I think he's realizing that I control what he eats.  He's always known it, but his little four year old self wants to make choices.  He wants to have a banana on pear day.  He wants to drink almond milk two days in a row.  He wants to choose whats for dinner.  I don't know how to give him these choices when we have so little to work with.

This is where my dilemma lies.  If you've seen B, you know he can't afford to lose any weight.  Little man has already fallen off his height curve.  So, do I risk him developing more allergies to give him more options?  Do I dare go off the rotation?  Do I just rotate grains and protein and let him chose fruits and veggies?  Do I use garlic more than twice in four days?  More allergies = more yeast.  More yeast = more permeable gut.  More permeable gut = more allergies.  So, we're potentially looking at more allergies or a child who will not eat.  This is tough.  I wish there was a support group for this sort of thing.  I wish I had a mentor I could call up and say "Hey, have you tried going off the rotation?  What happened?" or "How have you made the rotation work for you?  What do you do when your child won't eat?"

I'm stalled at a fork in the road.  Do I go left or do I go right?    I need to go somewhere because just  idling in this spot is getting us nowhere.              

Gripping the Wagon

Today I really wanted to throw in the towel and give my boy a cheeseburger....but I didn't.  That's all :)

No Cheese....But a Little Whine

We took B to his DAN doctor yesterday.  I was really hoping he would tell us we could start adding some foods back into B's diet.  No such luck.  In fact, when I asked when we could begin this process, he said, "When he is college age."  I guess he's the expert, but part of me wants to get a second opinion.  I didn't intend for this blog to be a whine session, but today I feel discouraged....so I'll allow myself a little self indulgence.  This stinks.  I feel a little better.

B's hair analysis showed high levels of mercury and aluminum.  His tin levels were off the charts.  Where in the world could he be getting so much tin?  Even the Doc. was stumped. 

I came up with a new system for the rotation diet.  I really hope it works!  15 more years of the same food might drive us all crazy.  This system will allow for a variety of recipes.  

B's doctor said we could try palm shortening.  I thought it was off limits because of his coconut allergy.  If he can tolerate it, it will open the door to new wonderful things, like cookies!  Prayers for no reaction to this are greatly needed and appreciated!

The message at church today hit home.  The story was David and Goliath.  Pastor asked, "What do you do when faced with a challenge?  Do you focus on the challenge or do you focus on God?"  Perhaps today I have been focusing on the challenge.  Silly, when my God is so much bigger than this.  I've been staring at Goliath when God is the real giant. 

Ticking, But A Good Day Nonetheless

The tics are back again today.  I knew it was going to be a tough day when this morning, B woke up and said, "It's too bright!  It's too bright in here!"  He hadn't displayed a hypersensitivity to light in months!  Then, at Jazzercise, he had a complete (B before special diet) meltdown.  This evening, we are back to shoulder popping and vocal tics.  I wonder what caused this?  I feel a little like a detective.  Is he developing a corn allergy?  Has he been exposed to strep?  Was it the Smarties lollipop I let him have because I 'assumed' it was safe?  I am determined to find the source.

On a happier note, B looooved the avocado pudding.  We finally found a way to get good Omega 3's in our boy.  Jilly loved it too!  I should have photographed their pudding faces.  Jilly had a full beard and B a Groucho Marx mustache.

We planted our garden today and B was so happy to help.  He'd carry each plant to us and brag about his muscles along the way.  I let him smell the basil and he said, "It smells like pizza!"  Then he prayed, "God, please make this plant grow into a special pizza for me.  Amen."  I love that he is talking to God freely.  I wonder what B must think of our garden.  Later, he accidentally stepped on the spaghetti squash plant and said, "Oh no!  Mommy, I just stepped on the spaghetti plant!"  In his mind, we are growing fully cooked meals.  Now wouldn't that be something!

Home Again

It is so good to be home!  In 11 hours, I will be holding B and Smoochie in my arms again!  The amount of information we learned at the Autism One conference is overwhelming.  A good kind of overwhelming.  I could go deep into the science, but my brain is mush.  So, I'll share just some of the lighter things I learned:

1. Avocados can be made into delish chocolate pudding!

2. There are more than 5 senses and B has issues with senses I didn't even know existed.  Vestibular?!?  
     Awesome speakers on Sensory Processing Disorder!

3. I so admire and look up to the parents who are finding cures to their children's autism.  They are some of the strongest people I have the privilege of knowing.

4. Jenny McCarthy is a fantastic speaker and advocate for her child.

5. Dr. Wakefield is a hero.

6. Biomedical treatment is unfairly scrutinized.  It has amazing results and makes much more sense than  
     pysch. drugs.  Well, I didn't just learn this...look at B's results!

7. There is such a thing as gluten free, casein free, soy free chocolate chips and soon I will have 4 bags delivered to me :)

8. Bryson's behavior issues are caused by too much sensory stimulation.  So, when he asks for a tent or a really long bath, he really just wants to block out everything for a while.  Hmmmm......maybe I have SPD....

9. Erik and I make a really great team.  He is my rock and my best friend.  We are very lucky to have each others support and love.

10. Cooking for B is tough work, but you know what?  It's not near as hard as not seeing his little face and getting lovies from Jilly for a week.  I will spend 12 hours in the kitchen if it means B & J will be playing at my feet.

* I called B today and said, "You have one more night night time at Grandma's, then we're coming to get you."  He replied with this, "ALRIGHT!!!!  Mom, that was a really long meeting."  I agree.

10 hours and 32 minutes....then all will be right with my world.

B's Awesome Progress!

We struggled a little at first.  The hardest day for B and me happened at Jazzercise.  It was maybe the second week of the new rotation diet.  We arrived at Jazzercise.  I took B and his little sister to the childcare room, forgetting about the snacks served there.  B went immediately to the graham crackers and brought them to Miss Elizabeth.  He looked at her with such hope in his eyes and said, "Will you please open these?"  I looked at him and watched his face fall as I said, "I'm sorry baby, crackers have gluten in them."  His eyes filled with tears and I can't even describe the look on his face.  It was as if at that moment he realized the magnitude of all this.  That his life was really changed.

Now, he is so good about saying, "No thank you.  I have allergies."  The good news is, B has never cared too much for food.  One time he even said, "Mom, I don't like food."  That means giving up some things hasn't been as hard on him as it would be for somebody who LOVES food (like myself).

The progress we have seen in B is nothing short of miraculous.  He has gone from ticking every two minutes to subtle tics every once in a great while.  He will have whole days where we don't notice them at all.  His behavior is significantly less erratic.  He eats so much more.  He sleeps through the night.  His sensory issues have decreased.  He even stopped biting his fingernails...which used to be down to the nubs and then he'd start on his toenails.  The circles under his eyes have disappeared.  He doesn't get sick all the time.  He is filling out and is so much happier!   Praise God!  I can't even begin to tell you how happy this makes me!  God Bless Dr. Baptist!

God at Work!

So, that handy little book for B's diet?  It turned out to be not so useful.  But let me tell you how God had prepared me for this and gave me the equipment to handle it.

Before I knew about B's food allergies, I was on a MOPS internet forum.  There was a woman there who had mentioned her son's multiple food allergies and I thought, "Wow.  I'm so glad we don't have to deal with that!"  Also, in another post, she said she was so excited about a cookbook that made everything easier for her.  I didn't think much of it.

Fast forward to our first allergy testing results.  I was at a loss, but remembered that post.  I sent that lady a message and she told me the name of the book.  The Super Allergy Girl Gluten-Free, Casein-Free, Nut-Free Allergy & Celiac Cookbook by Lisa A. Lundy

I ordered that book right away.  I read up on rotation diets, not knowing B would soon be put on one.  I learned about food families and nutrition.  I poured over that book for hours, no kidding.  Six weeks later when B was put on a rotation diet, I already knew so much.  I took the handy-not-so-handy book from the dietician and revamped the whole thing to fit B's needs.  I never would have been able to do this without the knowledge I gleaned from that Super Allergy book.  I never would have known about that book had God not put that wonderful stranger in my path.  Amazing.  What is even more incredible is the speaker at the Autism One conference is none other than Lisa Lundy! the author of the book.  We had no idea when Erik signed us up.  God at work!

Adjusting

After learning about the 25 food allergies, I had a million different reactions.  The first was confusion.  I could not even comprehend what had just taken place.  I was in a daze.  Next, was anger.  What a quack!  He just wants to sell allergy shots!  He probably didn't read the test right!  B has sensitive skin, of course his skin reacts. My child will be malnourished without these foods!  And finally, resignation.  Well, let's start with dairy and see if it has any effects...it did.

B gave milk up a lot easier than we'd thought he would.  He quickly learned to like soy milk and I even found I could make a really tasty tofu lasagna.  B's tics decreased dramatically.  Next, was wheat.  This was a little harder. Everything has wheat.  We took B to get a full blood panel and had to wait 6 weeks to get the results.  I just knew the blood panel would say B had less allergens than the skin test.  I couldn't wait to get the results!  Then, the appointment we were waiting for had finally arrived.

I stared blankly at the page in the Dr.'s office.  43 allergens.  43 allergens.  43 allergens.  This would not leave my brain.  How could I have been poisoning my boy with every single food I'd been feeding him?  He would cry at the dinner table because he felt bad and I would always say, 'one more bite' or 'eat your peas before you can play'...and it was poisoning him.

This is B's (incomplete) allergy list:  apple, barley, beef!, bran, cashew, cheese, coconut, codfish, crab, gluten(bummer), Honey (okay not an allergen, but not recommended), lamb, lobster, malt, milk, mushroom, mustard, oats, green olives, oranges, peas (favorite), peanuts, pork, rice, rye, safflower, salmon, sesame, shrimp, sole, soy (yep, no more soy milk either), sugar (again not an allergy, but bad for yeast overgrowth), swordfish, tuna, walnut, watermelon (his favorite),wheat, yeast, yogurt.

We got a handy little book that had B's diet all written out for us.  B was put on a rotation diet.  This means the food he eats on one day can not be eaten again for four days along with every food in that food family.

This is what Day 2 of the book looks like:
 Protein: Crayfish   Haddock
Grain: Buckwheat, Tapioca, Hemp
Vegetables: Asparagus, onion, seaweed, pumpkin, cassava, shallot, cucumber, rhubarb, squash, leeks, scallion, zucchini
Fruits: Avocado, mango, pineapple, cantaloupe, melon, pomegranate, caba melon, date, persimmon
Nuts: pine, pistachio, poppy
Spices: bay leaf, cardamom, chives, cinnamon, garlic, ginger, saffron
oils: canola, olive
beverages: cinnamon tea, hemp milk, pineapple juice

Overwhelmed.  I was beyond overwhelmed.  I dreamed of food all that night.  I didn't even know what to give B for breakfast.  I didn't know how I could even fit those foods together to make a meal.  One evening that week, Erik came home from work and I went into our bedroom and I melted down.  I shut the door to our room and didn't come out until the next morning.  God was at work even then.  I'd been having trouble sleeping and was just about to doze off when I bolted upright wide awake with this one almost audible message, "It's just food."  It's so silly that this would bring me so much comfort, but my whole outlook began to change.  The next morning, God gave me this verse:

 "Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous hand. ~ Isaiah 41:10"

God's Hand

It till amazes me to see how God has intervened in our lives.  I know He's always been there, but to be able to go back and pinpoint His work in this is....well I don't even have words.  I am humbled that he would even reveal His miracles to us.

A while back, before our daughter was born, Erik had run across an article detailing the biological responses of the human body when receiving vaccines.  I realize this is controversial, but bear with me.  I don't feel like delving into that topic at the moment.  I only bring this up because without this article, we never would have found the proper treatment for B.

This article caught Erik's attention.  He became very interested in vaccine safety, vaccine side effects, and eventually studying Autism itself.  Through his research, we learned about DAN! doctors.  (Defeat Autism Now)  DAN! doctors use biomedical treatments to treat the root cause of symptoms.

Honestly, I didn't know what direction to take with B's tic disorder.  In conventional medicine, it is common practice to send children to a neurologist, observe symptoms for a year to diagnose Tourette's Syndrome, then either medicate or wait to see if the tics subside.  Erik decided we needed to see a DAN! doctor.  Thank you God for this!

Our first meeting with Dr. Baptist was interesting to say the least.  Honestly, I had no idea what to expect.  I just thought we'd go in, he'd say, "here are some supplements" and send us on our merry way.  Ha!  I should have been more prepared.  He decided to allergy test right then and there.  B tested positive for 25 foods.  Milk being the most tragic for little guy.  He loves milk!  (I would find out later that people with food allergies often become addicted to the foods they are allergic to.  The offending foods create a 'high.' So, when B said 'I need milk cup!' He really 'needed' milk cup.  The lush.)  Also, has many environmental allergies that we are now treating with allergy shots.

Had Erik not found that article, B would either still have major tics and be waiting for a diagnosis or be heavily medicated.  God is Good!