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 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 ;)

Calling All Mommies: I need some advice.....

We received B's recent labs in the mail today.  Frustrating.  His yeast has grown a lot.  I hate yeast.  Hate it.  This has made me realize that we can't let our guard down.  I thought the whole cooking for B was getting easier, but honestly, I think I've been more lax.  His labs are showing that.  I need to get radical cutting out sugar.  I'm at a loss for breakfast ideas.  One morning he can have eggs, the next almond milk and corn chex, but after that I don't know.  If pancakes, waffles, and muffins are out..I have no ideas.  Any ideas all you mommies out there dealing with yeast overgrowth in your kiddos?  Rice is out for us....

Another bump in the road: shoes.  B can't stand the feel of them on his feet.  He will tolerate swim socks, but it's November, and we need to progress.  He's growing out of most of his shoes, but every time we try on a new pair, he freaks out a little and yells, "Too tight!  Too tight!" even if they are sliding around on his feet.  Any suggestions here?

Winding down is getting harder, too.  He's having a rough time winding down to sleep.  Meaning he is doing gymnastics and shuttle runs back and forth across his room, staying awake in his bed, hearing every little sound.

This mommy's idea tank is empty.  It could be a lot worse and I'm thankful for B's progress.  He's just regressing a little.  I know some of you have super creative ideas....would you mind sharing? :)

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.

Preparing for Preschool

B is going to preschool next month.  Preschool!  I'm a little excited, a little nervous and, well, a little sad.  With preschool comes physicals (ugh)  and dental appointments (double ugh).  We have been avoiding the dentist for four years now.  Little man lets me floss his teeth and he's a regular brusher.  I've not been too worried about his dental health.  I made the appointment today with a pediatric dentist and my conversation went a little something like this:
 Receptionist: Is there anything we should know about Bryson?
Me: Umm, he has sensory processing disorder.  He may be a little difficult.
Receptionist: Does he have any allergies we should be aware of?
Me: (how do I answer this?) Yes and the fluoride treatment is out for him.
Receptionist:  Why?  Is he allergic to fluoride?
Me: (Why didn't I just say yes?)  No, he has aluminum in his brain.

The receptionist must have thought I am completely off my rocker.  I'm sure she expects us to come waltzing in with tin foil hats.  But the truth is fluoride and aluminum are a bad bad bad bad combination. I am not looking forward to this.  B panics when we cut his hair.  What will he do with the electric tooth polisher buzzing around inside his mouth?  Seriously, the health department should cut parents of children with SPD a little slack.

B also has to have his ears checked to attend preschool.  We tried that already.  We could not get the headphones over his ears.  B panicked, went into fight and flight, and the nurse gave up.  How do I get past that on his health form?

This is all a frustrating process.  It should be no big deal, but to B things like this are huge stressors.  I really hope these medical professionals have a little knowledge and experience with SPD or we could be in for a wild time.

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!

Kicking Leaves

  B used to love to swing.  He would say, "higher, higher!  Want to kick leaves!"  We would push him so high his feet would touch the tree branches and he would belly laugh.  I remember getting bored with the swinging, but never bored with the giggle.  One day, while at the park, I put him in the swing.  I put his little legs through the leg holes and proceeded to give him a push.  He immediately started screaming, "stop! STOP!  Too high! Too high!"  It was only half as high as we would push him at home.  I didn't realize, then, that this was a sign of a sensory disorder.  I just thought he was grumpy and didn't want to swing.  These past two years, B would only swing on his tummy, very slowly and low.  That is, until this week.  B sat in his swing, clung to the chains, and said, "Push me mommy!"  It wasn't too high, but this is a start!  I'm really hoping he'll eventually kick the leaves and belly laugh.

B has a fear of the vacuum cleaner.  When he was younger he would scream in terror at the noise it made.  I learned to warn him in advance so he could to go to his room and shut the door.  Tonight, when I started up the vacuum, he sat in the kitchen.  He did not run to his room and I thought, "Hmm.  This is progress!"  Then I saw his little face peek around the corner and in an apprehensive voice, he said, "Mommy?  Can I help?"  He proceeded to take the handle as I helped him pass the vacuum across the floor.

These may seem like small things, but they are HUMONGOUS (as B would say) to me.  I am so proud of him for facing his fears and doing what is more than uncomfortable for him.  He is a little fighter.  I am so thankful God blessed me with this stubborn little boy. 

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!

The Beginning of it All

 B has always had odd little quirks.  We just assumed he was a quirky kid, that the apple didn't fall far from the tree.  He doesn't like loud noises.  The vacuum would send him hiding in his room.  I must admit, the vacuum makes me want to hide, too.  Although for different reasons.  He freaks out when his hair is washed or he gets a hair cut.  He would often complain about the morning sun hurting his eyes.  He began to fear swinging on his swing set.  Finger paints would send him into a panic.  As a toddler, I could not put him down.  He had an attachment to me that was more than clingy.  It was desperation.  He would often throw extreme tantrums, not necessarily anger, but frustration.  There was no consoling him.  It's strange to look back at what seems so obvious and realize we were so oblivious.  Something was wrong.

In October of last year, B's grandma noticed he was blinking often and hard.  I blamed it on fatigue.  He had spent a fun filled week with one of his most favorite people in the world.  I ignored it.  Then, around Christmas time, he exhibited a few more peculiar tendencies.  He would chew his food, then refuse to swallow it.  He would do this with tears in his eyes like he really wanted to swallow, but couldn't.  Then he would cough/sniff, cough/sniff, cough/sniff repeatedly.  So much so, it interrupted his speech.  Then, the shoulder popping began.  Shoulders back, then forward, rib cage sliding over his pelvic bone.  The tic that concerned us most was the head rolling.  He would roll his head around so often his chin became red and chafed from rubbing on his chest.  We could ignore the symptoms no longer.  It was time to seek help.  What follows is all God's doing......