I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Wednesday
Jul112012

Guilt and Gilt $$$$$

Three years ago, I did not know about a parallel world to my own, where children are misdiagnosed, where moms are accused of being militant, Munchausen or maniacally mad. 

And many of you, if you're not one of those moms or dads, still reside only in one world. As you should. You'd never know from a quick look at my son that we straddle two worlds. If you were to meet him during the day when he's engrossed with friends, you'd see a handsome, happy, athletic boy with a winning smile doing a trick on his skateboard. Or whooping it up as he flies down the blow-up water slide.  The diseases don't show themselves readily.

What you don't see are the rages, the despair, the OCD, the long sleepless nights, the tics, the brain fog, the body aches, the frustration with life that leads to suicidal thoughts. Hence, doctors don't see it either at first.

And then there are those doctors who don't believe in PANDAS ("Oh, that's over-diagnosed," one said.)  Plus, there's a split in the Medical Lyme community over whether Lyme can be chronic or not, with the Infectious Disease doctors naysaying blood tests and urging spinal taps and the Lyme Literate doctors offering antibiotics in all shapes and colors.  (Note--I'm totally in support of the Lyme Literate doctors (LLMDs) and continue to bring my son to them, but the fact is, there is NO cure for Lyme yet.)

My iFriends are trying and advising everything else within their power. I have been advised to give my child: naturopathic supplements, Vitamin D and C, fish oil, curcumin, activated charcoal, epsom salt baths, lemon water, electromagnetic mats, low-dose IVIG, high-dose IVIG, frequent IVIG, not-so-frequent IVIG, homeopathy, melatonin, alka seltzer, gluten-free diets, GAPS diet, dairy-free diets, sugar-free diets, all of the above, none of the above. I have read about testing for black mold, parasites, heavy metals, the MTHFR gene....  (I'm sorry, but my mind goes to other places when I see the name of this gene. I'm reminded of my kids coming home from school or camp one day saying, "Shut the front door, you mother father.")

Parasites?  Worms coming out of a kid's eyes or butts? This really exists? YES, although I haven't seen it (yet?!) It's like entering a theater showing Freddy--the 13th. Setting: Amityville.  Main Characters: Every evil character you didn't believe existed. Hannibal Lecter, for one. (Note:I abhor horror films.)

So, then the question is:  what to do?  And what to do first? We haven't yet been to an integrative doctor but we have seen the homeopathic naturopathic doctor.  We've been to one LLMD and have an appointment with the widely respected Dr. Jones in a few weeks (had to wait about 6 months for this appointment.)  We've been to different PANDAS specialists, including Dr. T (Trifiletti) and Dr. B (Bouboulis.) And I like them both, although they differ somewhat in their handling of the disease.  We are transitioning into being gluten-free (the whole family.) 

I keep learning.  The steroids we used for the PANDAS, which was diagnosed first, would have exacerbated the Lyme Disese. But my son had not yet been diagnosed with Lyme.  Now I'm reading that if there are parasites or if my 90 year old house has black mold (I know there's some,) that we need to deal with that in order to deal with the Lyme, and we need to deal with the Lyme in order to deal with the PANDAS.  And so it goes.

A lot of this costs money, time, emotions, blood tests (my poor pin-pricked boy.) But can we stop searching for a cure? Each child responds differently and a treatment that works for one might not work for another young person. I promised my son he would get better. When I made that promise, I didn't realize that these diseases were the equivalent to some forms of cancer. I didn't yet know about the new worlds we'd be stepping into. But every day, I renew that promise. And this alternate shadow world we live in? Perhaps someone will begin to take notice.

 

 

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