I STILL HATE CHEMISTRY!

I am dating myself I am sure, but the year I was to sit for the Chemistry Regents Exam in NYC, someone swiped the answers.  The morning of the test they were published in the NY Post.  I remember sitting in my high school cafeteria waiting to take the exam, only to find out it had been cancelled.  You know thinking back on that story, I guess I understand now why I have never won the lottery.  That was probably one of the “luckiest” thing to happen in my life.  I never did have to take that exam.

Except now, 25 years later, I sit poring over a piece of paper full of words I don’t understand.  I am brought back to the periodic table, and left to wonder if maybe I should have paid a bit more attention in class.

Toxic metals

I have actively picked apart each of these levels since being handed the report on Thursday.  I have read the descriptions of where this toxicity could have originated from.  I have made the few moves I could understand, and the old aluminum cookware hit the recycle bag, and the new stainless steel – to supplement the few pieces we did have – arrives this week.  The old cookie sheets are gone. Parchment paper replaces aluminum foil for cooking.  But what about the other ones?  What about the ones I can’t understand?  Or worse, what about the ones like “gadolinium” that I CAN understand, but I just can’t fix?????

This printout is old now.  The new urine sample was picked up Friday morning, and hopefully someone in a lab somewhere is generating lower numbers and shorter bars.  But, I won’t know that for  a few weeks.  So I am left alone with my worries, and my thoughts, and my sick kid.

invisible illness 4 dumptruck

I suspect if Meghan could tell the world how she feels, this might be the sentiment.  She is constantly conflicted with feeling like crap, and being pushed to keep on.  She not only plays in pain – she smiles and laughs through it.  And no one who sees her outside of this house would typically have any idea of the agony she endures each day.  She works hard to  hide it all.  She has told me, in her very own words, that “no one would like me if I told them how I really felt all the time.”  I would like to tell her she’s wrong, but she’s not.

happiness is

And she is the bravest kid I know.

The sore throat started Friday, hours after the chelation, and exactly the same as last time.  On Friday she pushed herself through gym class because she just wanted to be “normal.”  By Friday afternoon she was shot – too wiped out to swim.  She could barely swallow.  By Saturday morning her nuscles ached along with her throat.  No swimming Saturday either.

We barely left the house all weekend, except for a quick strep test Sunday that was negative.

The friends she wanted to invite over – postponed.

This was no coincidence.  This was twice in a row she was knocked on her *ss after chelation.  This was her immune system saying,” WHAT THE HECK WAS THAT?”  To the toxic storm unleashed by the chelating agents.  We have kept her well hydrated in hopes much could be excreted… but we will have to wait and see.

waiting (1)

Early to bed Friday, Saturday, Sunday, Monday, Tuesday, and again tonight.

SHE HATES going to bed early – but has gone willingly.

She went home from school early today.  No fever, but a clammy sweat.  She just needs rest, and water, and rest.

The headache is ruthless.  Even as some of the cold like symptoms start to subside, the headache does not want to quit.  A week now.  It leaves such a pit in my stomach I don’t want her out of my sight.  I hate headaches.  I especially hate wondering if the renegade toxins likely causing them are doing any other damage.

The doctor who last month said there was no way her symptoms were connected to the chelation recanted through an email today.  He is now keeping tabs, giving me tips to keep her comfortable, keeping my resolve strong that this is necessary, and working on downward adjusting her dose for next time.  More trips, more treatments… hopefully less misery.

I just can’t shake the image of  a snow globe, and as we try to get the metals out we stir it all up.  Some escapes, but the rest causes misery as it finds  hiding spots again.

snow globe

An in between it all life presses on.  Laundry gets done.  Bills get paid.  Lessons get planned.  Cars get exchanged.  Files are kept.  Clothes for the growing girl, are ordered.  Floors get vacuumed, and washed, and vacuumed again.  Groceries are purchased.  Lists are made, and lost and remade.  Tabs are kept on family and friends, and their health, and their struggles.

These are the every day tasks that keep me sane.  On autopilot.

Dinners are missed.  Meetings go unattended,   Places I want to go – but, I just can’t right now.

You see I am having a battle with the Periodic Table of Elements, and I need to study.  I am the front line.

So, I take my IONIX, and my t+chai, and I am thankful for energy and stamina to endure.

Maybe missing that regents wasn’t so “lucky” after all.  So as I study some these next few weeks – please know we haven’t forgotten you.  Our prayer list is long.  We don’t want you to leave us out, or not to call.  Don’t feel badly about overburdening us.  We NEED to be in your lives.  We WANT to be in your lives.

We are in touch enough to know that “Everybody has SOMETHING!”

from "Mommies of Miracles"
from “Mommies of Miracles”

 

Catch-22

catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.[1][2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over. 

-Wikipedia

 toxicworld

You know a person could go crazy trying to keep themselves free from toxins.  These days it seems to be an all consuming, and virtually impossible task.  Sometimes I wish I knew a lot less.  Sometimes maybe ignorance is bliss.  And cheaper.  And a LOT less stressful.

But then again, I think my girl would be a whole lot worse off.  And therein lies the “Catch-22.”

Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.

Back in the summer of 2005 things were definitely NOT ok here.  I knew it deep down where that Mommy gut nags at you.  We had speech therapy.  We had occupational therapy.  And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable.  We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”

So, I read.  I researched.  I altered her diet.  I added some key supplements.  I started to see results – but not enough.

This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan.  He told us he could help.  And he has.

We have worked together through dietary interventions.  Supplements.  IV treatments.  Countless blood tests.  And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5

He has been my sounding board through lots of ups and downs.  I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.

He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches.  “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.”  Not too often these days will you find any medical professional with that confidence or drive to do what is right.

Through the years we have visited his office at least 3 times a year for lengthy consultations.  He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue.  I have listened to many, and ignored a few.  Conversations have evolved over the years as we have each stayed up to date on current research.

The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal.  He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.”  Meghan “doesn’t fit in a box,” he would always tell me.  Never let them try to put her in one.

And, perhaps truer words have not been spoken.  As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.”  But, since we are yet to put our finger on it – we continue doing the best we can.

Cowden’s Syndrome involves screening tests.  Regularly.  For cancer, and vascular malformations that can form anywhere at any time.  X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.”  So MRI is the test of choice.  MRI with contrast that is.  Gadolinium to be exact.

I’ll get back to why that is important in a bit.

We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned.  In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.

We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially.  We have gone from treating with Advil to treating with 200 mg a day of Celebrex.

We have spent the last few years trying to help her stay calm- only to watch her anxiety mount.  In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss.  Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.

We understand the role of autoimmune disease and stress, and toxins.  We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene.  We understand that there is external and internal stress.

We do what we can to control stress on the body.  We make sure she has “down time.”  We try to help her get rest.  We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy.  We eliminated almost without exception preservatives and dyes.  We bought new pots and threw out the plastic plates we used to use sometimes.

We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.

And even at that – there is an awareness that we can NOT control it all.  There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly.  We are aware of toxins in the air, in our soil, and even in our filtered water.  We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.

GMO safety-testing

We run, like Indiana Jones, out in front of the boulder, in constant motion.  One stride ahead…

Chelation

Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/chelation-therapy

The term has been spoken over and over again by the “bio medical doctor.”  Chelation is the concept I found every single excuse to overlook and ignore.  The idea  shook me to my core.

The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck.  Let’s try to clean her out.”

toxic

She went for her first treatment last month.  After the treatment there is an 8 hour urine test to measure the toxic metals excreted.

She went for her second treatment today and I got to look at the printout of last month’s urine analysis.  So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.

There are several metals that were high.  None of that made me happy.  But the most disconcerting of all…

The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4.  Her output was 190.  No I am not forgetting a decimal.

Gadolinium.  Necessary for the cancer and vascular screenings set to be part of her life forever.  Except apparently her body can’t seem to excrete it.

Toxic metals

Catch-22

Keep Swimming…