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
Sep192012

Help Wanted!

Wanted: Pediatrician who takes insurance to work alongside family and PANS/PANDAS/PITANDS and Lyme Literate doctors to help cure a child. Must be open-minded, compassionate and a lifelong learner. Must be a problem-solver and a good listener.

(Note: I just interviewed an exceedingly nice pediatrician for this role, only to discover that he doesn't believe that Lyme is so prevalent and that antibiotics should be given long-term. He was genuine and almost regretful but told me he cannot work with us. Where do we find somebody who can help guide us?)

Wanted: Therapist, young-at-heart and energetic, with a working knowledge of kids who have neurologically-based behavior issues. Must be able to relate to kids who look fine on the outside and store up all their stress for home. Must trust parents to report the facts. Needs to understand that PANS is a medical disease that afflicts children. Must be a lifelong learner and the kind of listener who hears between the spaces of words.

(Note: My son tends to relate better with younger and more attractive therapists. Shrug. Here's a story: when he was 3 and in the kiddie pool at a club, the lifeguards changed. A new girl with long, silky blond hair and a sweet face came over. Before we knew it, our little guy was throwing himself backward in the water, saying, "Help!" This is not a learned prejudice. He's just a picky little guy. He can relate to warm, open-minded, young-at-heart men, especially if they connect over football, but tends to like talking to women better.)

Wanted: Teacher who is open-minded, forgiving and compassionate to explore alternative learning techniques for a child who has encephalitis due to Lyme Disease and PANDAS. Must understand that homework is a major stressor that can trigger setbacks. Must read up on PANS and be creative and activity-based in approach. Must find a way to make learning fun and exciting.

(Note: I am a teacher. This is a tough assignment. I have 22 kids in my class and I consider myself lucky. Some schools have class sizes that are much greater. But 22 kids when one is a child with PANS is challenging. My son came to my class last year for a day. Everything we did was activity-based but his brain-fog made the math stressful for him. At home, I'm mom and not a teacher, although I try. But he rebels. So does my daughter. Hey, they don't like it when I sing either. Two of the things I'm really good at. What happened to respect?)

Wanted: A Lyme-Literate Doctor who is experienced, successful in fixing our kids and who takes insurance. Unfortunately, this is an oxymoron, because Lyme Literate doctors are being kicked around by the CDC and insurance companies who refuse to believe that so many of our children can have Lyme Disease. I am at grateful for the courageous LLMDs that we do have. I am not grateful for the hole in my pocket. I don't blame the LLMDs for that.

(Note: I wish wish wish that there were about 1000 Dr. Charles Ray Jones all around the world. And that these doctors all took insurance and were not being persecuted by the doctors who disagree with them.)

Wanted: PANDAS doctors who can offer IVIG and get everything covered by insurance. Oh, but wait. Aren't some insurance companies refusing to cover IVIGs for PANDAS patients? IVIGs can run parents about $11,000 per 2-day dose. There are parents who are selling homes in order to pay for the needed treatment for their children. Hey, at least PANDAS docs don't tell us that our kids are crazy.

(Note: WE've been lucky with this, so far. So far.)

Wanted: Documentary producer willing to take on a world-wide project aimed at showing audiences what PANS is doing to our children. Think of what "Under Our Skin" did for Lyme.

(Note: I did speak with one fantastic film-maker. $$$$ is needed. Donations. And very possibly, a celebrity whose child suffers from PANDAS, to help sell the whole idea, this person said.)

Wanted: a school for children who have PANS and have trouble learning in traditional ways. A school that notifies parents if one child comes to school with an infectious disease. A school that keeps our children away from germs. Teacher to child ratio: 1:5, with social workers and guidance counselors.

(Note: wishful thinking)

Wanted: a summer camp for children who have PANS so that they can meet one another and enjoy regular activities that appeal to children. Camp counselors will all be trained in working with children who have low frustratio tolerance (and tics, OCD, enuresis, night-walking, nightmares, etc.) Counselor to child ratio: 1 to 2.

(Note: my son stayed home with me all summer. ALLLLLLLLLL SUMMMMMMMMMER. He was not in great shape. This will NEVER happen again.)

Wanted: Hospitals that are PANDAS-friendly and Lyme Literate. When certain psychiatric drugs are administered to children who have PANDAS, their symptoms can be exacerbated. PANS-friendly hospitals will understand how to correctly administer pharmaceuticals. If we give steroids to children who actually have Lyme Disease, we're helping to grow the spirochetes. Also, we need hospitals that can take children when they're herxing. Psychiatric hospitals like to separate children from their families. Cancer hospitals would never do this. Why should children be separate from parents when they have a psychiatric illness or a neurological illness caused by an infection?

(Note: Get thee to a hospital, said the doctor to us. And at one point, we did. Little did we know what we were in for. Bad times, bad times.)

Wanted: Alternative health hospitals that use homeopathy and naturopathy to cure these diseases. Homeopathy is much more popular in the UK, India and Germany. It's not mainstream in the US. Even better--insurance coverage.

(Note: I find that even the best MDs don't understand homeopathy--they think it's natural medicines and vitamins. Our wonderful homeopathic doctor told me that homeopathy and antibiotics cancel each other out. Antibiotics kills while homeopathy gets the body to be stronger and take care of itself. We need so much more education in our country.)

Wanted: One night, free from my kids, my worries, my nightmares. One heckuva good babysitter is needed.

(Note: I want a night with my husband and friends, to wine and dine, dance, hold hands and to NOT talk about kids. So not happening. Every night at home is filled with turmoil. It won't be like this always.)

Wanted: A cure for my child.

(Note: Please?)

 

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