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.  


  1. Love it! Just make that anger work for you! Even Jesus tipped some tables in his day! :)

  2. Don't blame you. The medical field is not FOR people in several cases. We're another story of the medical field having their nose too far into the books and how they were taught to look at what is really going on. I despise their doctor jargin and how they attempt to avoid saying things with fancy wording that can be decieving. No kidding. I was told my son doesn't have 'classical autism' we both knew that and the test they did was not for 'classical autism'. Don't me something I already know. I find that I have to put the doctor in a position where they can only answer 'yes' or 'no'. It's frustrating.

    1. It is frustrating. I'm sorry you have to deal with it, too.

  3. Just reading tonight...because I need to. Because I feel angry about this too! This is a wonderful post. Being honest is the only way to make change. It doesn't mean we don't love our kids for who they are! But we have every right to be angry for the pain they/we suffer. It will motivate us to make change. It is unfortunate and stops progress when people try to take those feelings and that very powerful motivation away! You are a powerhouse! Keep going! I appreciate it.
    Jackie Murphy....South San Francisco, CA

  4. Thanks Jackie...and welcome to my blog. :)