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 ;)

PANDAS.....It has a name!

Ladies and Gentlemen, we have diagnosis.  I can't tell you how much relief it brings me to give a name to this thing.  B has PANDAS or ‘Pediatric Autoimmune Neuropsychiatric Disorder Associated with

Streptococcus.'  I'd like to tell you all about this disease named after a cute, lovable bear but it's all new to me and I have a lot of research to do.  Here is a link full of great information: http://www.pandasresourcenetwork.com/about-pandas/pandas-faqs.html

Here are a few things we found out today:

1. B is not metabolizing saturated fats properly so we will be adding more.

2. We should have started B12 shots and olive leaf extract months ago.  We have a loooooong list of supplements to add to his already extensive list.  Any tips for a little guy who can't swallow pills and hates smoothies?

3. There is an Asian Market that has sweet potato pasta.  Can't wait to get back to that city so I can hunt for these!

4. B is hypoglycemic in the night and needs a high protein snack before bed.

5. His yeast has increased (already knew that) so we need to increase his crazy expensive probiotics.  If you see us in our van without hubcaps please know we bought probiotics instead.  Ha!

6.  B has not grown at all (height or weight) in the past 3 months...probably longer.  Hopefully with these supplements, he absorb more nutrition.

7. His metal levels have decreased a little, so he's chelating on his own a little.  With the exception of mercury.  He is still accumulating and we have no idea how.

I'm sitting here in B's movie theater.  (His dark room, bottom bunk, and a portable DVD player).  We are watching Dumbo.  This was his favorite when he was 2.  It's bringing back so many memories.  He has a wooden magnetic train he used to push up and down the hallway singing, "Dumbo choo choo train.  Going down the track. With a smoky stack."  I now see the love Dumbo's mother had for him in a whole new light.  She would do anything to protect her sweet baby.  Just like we are doing everything we can to protect and treat our sweet B.

Earlier this week, we made a chocolate cake (the best ever!) for B to take to Cubbies to celebrate Jesus's birthday.  B asked me, "Are we sharing with my friends?"  I told him there would be other cake for his friends.  His response: "Oh, so just me and Jesus are going to eat it?"  I love this little guy so much!  He never fails to make me smile.

Then and Now: B's experience with Biomedical Treatment

I am truly amazed at B's progress.  Amazed.

B before biomedical treatment:
Tantrums nonstop.  It was nothing for him to throw a tantrum for half an hour.  His tantrums didn't revolve around him not getting his way.  Ninety percent of them would occur because he lost something.  He went through a period of having to carry certain objects around always.  One time it was baby food spoons, three of them.  He would always know if one was missing and we'd turn the house upside down looking for them.  After that it was marker lids.  5 of them.  One for each finger.  He called them finger 'mops'.  If he didn't have five he was a mess.  The worst of the worst was rubber bouncy balls.  Ugh.  To this day bouncy balls are not allowed in our house.  Then it was Hoo Hoo Ha Ha, Blue Doggy and Branson Bear.  He carried them everywhere.  He was very obsessive.  One time we were in the van and he wanted me to hold him.  Obviously I couldn't because I was driving.  He said, "Mommy Ju Ju! (hold you)"  178 times.  I counted to keep myself from going crazy.

B now:
He has the occasional 4 year old outburst, but calms down quicker.  He no longer carries random objects.  In fact, last night I said, "You haven't slept with Hoo Hoo Ha Ha for a while."  His face scrunched up and his voice got sad and I thought, "Great.  Here comes the fit."  He said, "Have you seen him?" I said, "We'll look for him tomorrow."  B said, "Okay."  Okay?!??? No fit?  No obsessing?  No running around the house room to room shrieking?  Okay???!?  Okaaaaay :)

B then:
B had purple circles under his eyes.  He would refuse to eat.  He was in the 3rd percentile for weight.I would have to coax him to take every bite that went into his mouth.  I remember in my gut knowing something was wrong.  I even googled childhood cancer because his appearance worried me so much.  Little man was so constipated, he would cry with every effort...and the end result looked painful enough to make me want to cry.  This made potty training very difficult.  These are days I wish I could take back.  I thought he was holding it in on purpose because he did not want to use the potty, thus causing constipation.  I even disciplined him every time I thought he was holding it in.  Poor kid.  I wish I had known what was really going on.

B now:
B's complexion is great!  No more circles.  He eats all the time...seriously, I feel like I'm cooking and baking 24/7.  He's making up for lost time.  At his last DAN appointment, he weighed in at the 50th percentile!  He is using the restroom independently.....and brags about it.  He's never grasped the concept of 'too much information.'

B then:
The sun was too bright.  His bath was too hot.  The vacuum was too loud.  His swing was too high.  His friend was too stinky (so that one cracked me up).  Everything tasted too strong.  He would only eat bland, bland, and more bland.

B now:
He doesn't complain as much about the sun.  He prefers really hot bath water.  He tolerates the vacuum as long as I warn him before I turn it on.  He wants pepper in his baked beans.  He is still more sensitive than other kids....never give him a peppermint, this I learned  the hard way....but his improvement is huge.

B then:
Random frequent rashes, runny nose, sick all the time.

B now:
One rash since February caused by  his sunblock.  He was sick one time last month.  His nose rarely runs.

B then:
He had a hard time initiating play with other children.  He would get in their face, stand too close, and make a goofy noise.  Most of the time kids his age would back away or ignore him.  His fits didn't help much in the social arena either.

B now:
He is great at playing with others.  Today at the library this really hit home.  He was having conversation, asking questions, initiating play, laughing and pretending with other children.  In fact, another child stood a little too close, made a goofy noise, and B slowly backed away. It has come full circle.

About our pediatric appointment.  We gave our test results to our pediatrician.  He was pretty skeptical.  He said, "I don't know what these test results mean.....I'm a little ignorant about this......Do you mind if I keep these and ask my colleagues?"  He proceeded to ask how we found this doctor, had we read any testimonials, how long had he been in business, etc...skeptical.   It was great that he admitted he didn't know what the test results meant but I'd rather he call our DAN himself.  I would love it if our DAN and pediatrician were on the same page.  My glimmer of hope is this:  He said, "well, I guess if it's working......."

Our DAN is a Ph. D and an MD with extra training in treating autism.  His methods are working miracles for our son and so many like him.  I wish the American Academy of Pediatrics would look into this treatment.  Think of how many more children would be able to recover.

A little bit nerbous (as B would say)

I'm a little nervous.  A lot nervous.  It's past midnight and I am not in bed nervous.  B has his pediatrician appointment tomorrow so he can enter preschool.  This is the appointment where we take in all the tests from our DAN doctor.  I realize we should have done this earlier, but well, I was nervous.  This is the appointment where we politely decline any vaccines.  B is allergic to yeast, beef, pork and has large amounts of aluminum in his system.  Therefor he is allergic to yeast extract, bovine syrum, and gelatin.....not to mention more aluminum could send him into a tale spin.  Why should I be so worried about this?  The truth is I loathe going against the grain.  Biomedicine is looked down upon by conventional medicine, yet it is what is working for B.   Perhaps I shouldn't make assumptions.  Maybe B's pediatrician will be open minded about the treatment that has completely changed my little boy for the better.  Ugh, why is it so hard for me sometimes to hold onto the peace that comes from God?  I'm hoping a little meditation on Philippians 4:4-7 will help put my mind at ease and bring a sound sleep.

4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Woot Woot!

We have had an AMAZING week!  B's sensory issues seem to be disappearing one by one.  He swinging has gone from a little swing to..kicking the leaves!  He used the hand dryer at the drive in last night!  He put lotion on this morning!   He ate sunflower seeds, when the texture used to revolt him.  I am one happy momma :)

Biomedical treatment sometimes gets a bad rap.  I've heard comments like, "there's no science behind it to prove it works."  "Parents are just grasping at straws and subjecting their kids to unnecessary treatment."  Let me tell you, I do not care what the critics say.  I have living, breathing, high swinging, proof.  I have yet to figure out why some seem to think changing the foods that our children eat and giving them supplements is extreme.  For my boy's sensitive system, dosing him with Haldol would have been extreme.  Extra vitamins and whole foods, not so much.

B started probiotics this week to get rid of the yeast in his gut.  When researching probiotics we found that children often regress a little while their bodies are detoxing.  I'd say B must be in the detox phase.  He is bouncing off the walls.  He can't sit still for even 30 seconds.  He is constantly talking and when he runs out of things to chatter about, he reverts to babbling like his little sister.  He's having monster meltdowns over trivial things.  I guess this is good news.  Die yeasties!  You nasty little buggers!  Seeing him act like this has really shown me how far he has come.  He used to be this way ALL the time.  And to think I thought he was just quirky.....denial.  Thank you God for the tics!  Without them, we never would have sought treatment.

Now, my mission is to make a gluten, dairy, rice free birthday cake.....and have it taste good.  Little man is turning 4!

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. 

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!

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!