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

Sunday
Oct072012

SCARED

I'm feeling very angry and frightened by everything that's happening in the outside world.

I'm greviously upset by what Boston Children's Hospital is doing to Elizabeth Wray. If you haven't been following, her parents took her to BCH from NY, where she'd been diagnosed by two different doctors with PANS and Lyme. They needed help because she has PANDAS-induced anorexia.

If you're read my blogs, you'd know that we tried to go gluten-free here for my son. But he pretty much stopped eating. So, we're not gluten-free. And we're not sugar-free. Not the healthiest diet for a kid with Lyme and PANS. But I've watched pounds slip off of him. And I've heard how his tastebuds don't work anymore and I've seen him rage when he's too hungry.

Just as any good parents might do, the Wrays brought their daughter to BCH. Hospital officials said that they don't believe in PANDAS, called Child Protective Services, took custody of the child away from the parents, then removed the child from the antibiotics she's been on (as well as the gluten-free diet) They have force-fed her, held her in a hospital bed, screaming. And they won't transfer her to a hospital that does believe in PANDAS. 

OMG. This could have been my child. We could have mistakenly gone to BCH. We haven't gone to a hospital since learning that our son has PANS. I'm afraid of hospitals now. If we did, the only one I can think of is Mass General (perhaps the only hospital in the entire country that does believe in PANDAS; they're building a PANDAS clinic.) Ironically, both Mass General and Boston Children's Hospital areaffiliated with Harvard University. But they have very differing views about PANDAS. Check out Harvard Medical School pyschiatrist, Dr. Michael Jenike, as he speaks about PANDAS: 

 

The world is not ready to hear about PANDAS. Gads, if it were cancer, people would be knocking down my door to lend support. But not an invisible disease that affects behavior. People knock down the door to head in the other direction. Most of the world doesn't understand what we PANS parents endure--and has no wish to.

One year ago, we were distraught. The psychiatric drugs that had been given to my son weren't working. Our doctors had no idea of what was wrong. And then, someone came to our aid. A wonderful PANDAS doctor saw us the day after I contacted him (and I left a message on a Sunday;) he got us in immediately after hearing that my son had been previously and erroneously hospitalized. Now this doctor, as well as others, is being harassed by governmental and medical forces that want to believe that PANDAS doesn't exist.

Just listen to the 1000s of parents across the world. Some children with PANDAS have been cured--with a lot of antibiotics, with tonsilectomies, with IVIGs. Other children are still waiting to be cured. My son is in the latter group.

We can't lose more brave doctors. I've been scared for a long time, wondering if my son will ever get better, worrying about the effect on my daughter, pondering why life must be so hurtful.

I need to continue to concentrate on turning my negative energy into achieving something for all PANDAS kids. I mean, really! What is the purpose of life if this is all there is--pain, stress and torment. I'm by nature an optimist. But sometimes I sure have to work hard to believe there's more than this.

It all makes me think of two historical events that happened before my time: The Salem Witch Trial and the McCarthy Era. There is a witchhunt going on for professionals who believe in and treat chronic Lyme and PANDAS, PITANDS and PANS. If this witchhunt succeeds, what will happen to my child? 

I'll tell you. He will not be alive. I need these doctors to save his life. Please. Take a stand today.

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