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.

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.

Missing the kids....Hello Chicago

We arrived in Chicago for the Autism One conference.  I miss B and Jilly so much!  This is probably hard on Jilly because she doesn't understand why we are gone.  I'm trying not to think about it.

Part of me feels like an impostor (one of B's favorite words) like we shouldn't be here because we don't have an autism diagnosis.  The other part of me is so ready to learn all I can to help Bryson.  I'm especially looking forward to the day devoted to special diets.  That should qualify us, right?  Also, I need to learn more about sensory processing disorder.  It will be great to meet other parents who are experiencing all that we are experiencing.

I'm really hoping the issue of tantrums will come up.  B gets frustrated so easily.  Not angry, but frustrated.  He will fixate on one thing until it is resolved.  When he was two, he threw a tantrum that lasted 1 hour and 22 minutes.  We should have known something was up, then.  His behavior has improved by leaps and bounds since he's been on the rotation diet.  However, he does still have his moments, especially when triggered by an allergic reaction.

I hate it when people see his tantrums.  I know they are thinking, "that child needs a good spanking!"  He gets a label as a difficult child.  He is compared to his easy going baby sis.  I'm guilty of making comparisons myself.  I hope anyone who has witnessed B's challenging moments could see the child he really is.  Sometimes I think if people could see how much I love him, they would see that he is truly an amazing little boy.  It's silly, I know, but the other day I was staring at him intently with love just willing anyone to see how lovable this little guy is.  Perhaps I am just paranoid.  I know he is adored many of our friends and family.

I feel guilty (a mommy's most felt feeling, I think) even writing this.  So, now let me fill you in on my little guy's endearing qualities...there are many :)  He is super creative.  He can make up stories on the spot.  His vocabulary is huge for an almost four year old.  He is so sweet.  At night he asks for a prayer and then asks me to be his "snuggle bug" while we sing lullabies.  He is thoughtful.  Last week a little boy dropped an armful of books and B stopped playing to help him pick them up.  He has the cutest little boy face I have ever seen.  He is awesome with his little sister.  He watches out for her and is disappointed when it's her bedtime.  He is proud of his family.   He loves to brag on his mommy and daddy.  He is brilliant.  When he hugs me with his skinny little arms, my heart just melts.  Can you tell I miss him?