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
Jun232013

Things That Go BUMP in the Night

Check out this idyllic picture. Two tiny girls sit in a green field, on a blue, sunny evening, talking to each other in little girl voices. But they're sitting in grass. Grass that harbors ticks! OMG--get them outa there! And that kid climbing up the tree? My word--haven't you seen Under Our Skin? There are scores of ticks in trees and fields. 

And one of those ticks apparently once bit my son.

So, yeah, you can say that a previous decidedly un-OCD person (me) is now a little OCD about the woods, trees, grass and bugs. 

Ticks are everywhere in the USA, having been carried by birds and in people's luggage. Our beautiful Bambis transport the ticks to our backyards, as do Cinderella's mice turned footmen. Moose in Minnesota can carry as many as 120 THOUSAND ticks. So, yeah, don't tell me there are no ticks in Georgia. Or California. Or England. As sufferers of Lyme Disease will attest, these bugs are there. Dr. Charles Ray Jones has treated over 10,000 kids from all over the world. Ticks are rampant.

Ticks scare me.

Something else that scares the heck outa me is The Hospital.

Alan Cumming does a one-man performance of Shakespeare's Macbeth on Broadway and I got to see it, thanks to a great friend. Guess what the setting is (spoiler alert!): an old mental hospital. Puke green cement walls. Metal framed beds. Gulp.

Well, there are mental hospitals that still look like that. Take, for instance, Westchester Medical Center. The first time my son showed PANDAS symptoms--and they were bad and pretty much overnight--we we were directed to go to WMC by his neurologist. WMC has a beautiful new children's hospital with an enormous fish tank. Unfortunately, we were instructed to bypass the children's hospital and go directly to the psychiatric center instead. Locked doors. Security guards. Old walls and furniture. Nothing kid-friendly. Not even food, after waiting for hours and hours. I had thought my son would get an EEG, an MRI, a medical test of some kind. Nothing like that. They merely asked us questions.

This is how a psychiatric hospital works: the child remains overnight without family members. There are visiting hours. No, folks, this is no camp, for there are others who are in far dire straits than your child. Children who have all sorts of undiagnosed or diagnosed issues. Children who will attempt to make a run for it, and be apprehended.

It seemed ridiculous to take my baby away from me and lock him up in a psych hospital just when he needed me most. You don't do that to a kid whose tonsils have to come out, a kid who has a broken arm or cancer. Fortunately, this time, he came home with us. He was absolutely fine at the hospital but then crawled around the living room and hid in a closet the minute we got home. Typical PANDAS behavior--to hide the symptoms in front of others, only to explode with them in the safety of home. This was NOT behavioral, as the professionals would have us think at the time.

For goodness sake, I thought, why can't these professionals figure out what's going on with my kid's brain. Even I knew that it was neurological. Sleep-walking, night terrors, tics. Mood disorder--really? These symptoms were enough to cause a mood disorder. My 9 year old had been the happiest, healthiest baby EVER. And now this....

Yet no one believed me. 

I read today on one of the support group pages about a family that went to their local hospital after their child had a horrible rage. In this case, the family knows that their child has PANDAS and still the hospital wanted to treat the child as a psychiatric case. The hospital would not acknowledge the fact that PANDAS, or a post-strep autoimmune encephalitis, can actually cause these symptoms.

Because a gag order [probably] still exists around the case of Elizabeth Wray, she is probably STILL an inmate at Boston Children's Hospital. But no one is talking about it. No one except for a few PANDAS parents, that is. The media, that barely acknowledged her presence to begin with, has ignored her altogether. Her parents had gone to BCH for help because Lyme and PANDAS had induced anorexia in their 16 year old daughter. BCH called CPS, removed custody from her parents, removed Elizabeth from her dairy-free, gluten-free diet and antibiotics, stuck her on psych drugs. And that's all we know--except that Beth Maloney took the case and all the way back in October, we had rallies for her. 

Never go to BCH, we tell people while this poor girl lingers. I know of another child who has been treated unsuccessfuly with psych drugs, whose parents are hoping to convince doctors to try IVIGs. At what point will hospitals work with families of PANDAS patients? AT what point will medical professionals acknowledge that autoimmune encephalitis needs to be managed medically?

So, I'm screwed if I take my kid to a hospital. What happens when my son rages? What happens when he herxes? Can I bring him to a local hospital like Westchester Medical Center? I think not. WMC is the home of Dr. Gary Wormser who is the antithesis of a Lyme Literate doctor. It is the hospital that did NOT check my son's strep titers, mycoplasma titers, Lyme antibodies (not that he was making many at the time--the sicker a person is with Lyme, the fewer the antibodies they create.) WMC is the hospital that ASSumed he had a psychiatric condition without ruling out medical conditions. 

Come to think of it, it's the same hospital that gave my 2-week old daughter a spinal tap when she had a sudden fever. She now shows positive for Lyme band 23. Could she have had it then? Who knows. WMC certainly didn't know. They didn't even want to acknowledge that Lyme can be spread in utero. They actually sat on proof that babies can be born with co-infections, while denying it for ten years. See here for the article that broke ten years after the fact.

Watching Alan Cumming descend into the madness of Macbeth was disturbing. He bloodied his hands, he bloodied his soul. He became the hand-washing Lady Macbeth: Out, out, damn spot! He's a talented actor and he was faking. But what I see at home is not faking. 

I have no recourse if my son submerges once again into the world of rages. It may be that one little pill is keeping him from the dark side. He's getting bigger and I'm not. He's getting stronger but he holds back. I've told him that he needs to use superhuman or superhero strength in order to refrain from being destructive when he has a rage. He's like a sweet Bruce Banner who can transform into the Incredible Hulk when pushed past a certain point. In real life, my boy is one of the gentlest boys around. But under a Lyme Herx or PANDAS flare, he's not. At least to me. He told me last week, "Mom, I just want to run away from my brain."

So, ticks and hospitals terrify me. 

Now for something that soothes me...knowing that you're out there, fighting the fight, spreading awareness for our kids, making a difference in this world. 

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