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

Tuesday
Aug212012

Live, from the DR office, it's IVIG!

Scene: semi-tall, barefoot, 11 year old boy in warm Lazy-Man chair. NY Giants blanket on his knees. His dad's iPad on his lap. TV on; Disney channel playing what we refer to as the "stupid shows." Other chair in the room occupied by mom wearing a black and white "help destroy bad PANDAS" t-shirt. Powerbook on her lap. iPhone plugged in as well so she can text with husband.

No, this is not a commercial for Apple products! Haha!

Other props: bag of fun food (trailmix, blueberry muffin, protein bars, potato chips and...fruit, which goes untouched.) The yogurt that mom has not yet eaten. Books. Lab reports. Homework (also goes untouched.)

Welcome to the 2nd day of IVIG. The past two times, in January and again in April, we came away with new friends (for my son and for me.) This time, arriving in the afternoon, when others are leaving, the feeling is a little different. No kids walking around with Nintendo DSs (one time, my son had 4 other kids in our room, all with their DSs. Another time, he insisted I meet the family next door so that I could introduce him to the boy. He then stayed there for an hour, chatting. Easy peasy. IV will travel. Just plug it in to the next room.)

But today, it's quiet. My boy is kinda tired. My husband and daughter came in with us; after talking with the doctor, they left to go to the movies, and will return later. And tonight, we make this into a vacation (not) and stay in a hotel. With a pool. If my son feels well enough.

We will go out to eat. If he feels well enough. Last night, my dad, visiting from FL, took us out. "Oh, have you been to Chipotle?" he had asked. We took one step into the restaurant and my son was pummelled with the vision of metallic tables and fluorescent lights and the scents of healthy, spicy ingredients. Sensation issues swarmed. "I can't stay here."

"Welcome to my world," I whispered to my father, as we headed for a pasta place across the street. My dad didn't notice his grandson writing curse words on his frosted glass of water. He didn't realize that I pulled my son's chair over to me and held him. Maybe he thought I was just being affectionate. But I was pulling him away from my 9 year old daughter who was noting his every move and trying to avoid his stretching legs. When the sensations are overly-much, holding him close helps. Yelling or scolding doesn't. Not one iota.

I don't know if it was the IVIG yesterday that was responsible for his staggering around last night, or the Benedryl that made him loopy. (Today, they cut the dose.) One of his triggers is fatigue. It does something to his brain. Or maybe it does something to his self-control, because when he's feeling good, and doesn't have any outside triggers (homeowork, chores, an argumentative ittle sister,) my son is fantastic--and then, when he starts to fall off this perch, he's self-aware.

So, here we are today. They hand me the lastest blood test results. I note the report about the MTHFR gene, which says positive (but the medical staff assures me is really negative.) After "talking" with iFriends on my support group, I look it up on Dr. Jones' website. Whatever. I'm not worrying. Whether we should be concerned or not is out of my control. Dr. Jones will most likely know what to do with all this. We see him tomorrow and I'm nearly as excited as I was when we went to Disneyland. Well, you know what I mean. Finally, a doctor who knows what to do with everything my little boy has.

I'm diagnosing him with Bartonella, based on everything I've read. I know--we should never diagnosis ourselves or our own children, but if I hadn't figured out that he had PANDAS, he'd be hanging out with Lord Voldemort somewhere. Don't get me wrong--I won't medicate my child based on my own research. But I will sure as heck take him to the doctors. Prove me wrong or prove me right, but figure this out. 

Mom's gut (and research) seems to have made a difference in the life of most of the children who suffer from PANS. (Dads, too, in some cases, but I do notice that it's mostly moms who research.) Someday, all of this will be in the history books. Well, medical history books, at least. The generation of children who suffered from PANDAS but were hard to diagnose. The generation of folks with Lyme who were told it was all in their heads. The invisible diseases that were ignored by many in the medical community. It's hard to wrap my mind around the fact that some researchers are motivated by profit, that they have ties to pharmaceutical companies, and that their first goal is not to save today's children. (Note the article reposted on my FB site in which some of these researchers who said that PANDAS doesn't need to be treated right away are connected to companies selling medication for tics.)

Yet, I still believe that most people are good and that life will get better. I can't help it; it's 2nd nature for me to believe. Maybe it's because I teach 5th graders. There's potential everywhere.

This weekend I will bicycle (only) 50 miles with my husband alongside farms and the Long Island Sound. I rode 30 miles Sunday with a friend from high school and for the first time in a long time, I rode at a relaxed pace. Biking felt like butter--so smooth, so accommodating. I had forgotten how to ride for pleasure. This Sunday, since we are not bicycling 100 miles, we can ride for fun.

I'm getting off the Powerbook now. A friend I met in this office months ago is here with her son, who also is struggling to overcome Lyme and PANDAS. Like my son, he is a football player. Like my son, he will go on to do great things someday. Simple joys: connecting with another parent of a PANDAS child. But joy it is.

"Simple joys have a simple voice:
It says time's a living prize."  --Pippin

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Reader Comments (2)

I am in awe of your optimism. I need some of it. You are an amazing mom and your son is very lucky to have you. Hugs.

August 23, 2012 | Unregistered Commenterkaren durm

Great depiction of IVIG. Love it all.

August 27, 2012 | Unregistered CommenterWendy Nawara

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