Thursday, June 21, 2012

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.  

Friday, June 8, 2012

Pull up a Chair


Thursday, June 7, 2012

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!


Friday, June 1, 2012

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.