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

Mapping It Out

"You're pretty," my son says to my daughter.
"You're handsome," she grins back.
"You're smart," he says with a snicker.
"You smell...wonderful!" she giggles.

Aw, aren't they just so sweet? Well...not really. It's OPPOSITE WORLD at our house. Short means tall and north means south. 

And talking about north.... A few days ago, I took my son to Jones Beach. We met another family there; we had gotten to know them while our sons received IVIGs. My son and his friend, who also struggles with Lyme Disease, had a blast in the waves.

On the ride to Long Island, my son asked me which direction we were traveling in. Used to be, in times of old (umm, before he was born,) that I kept paper maps in the car. AAA was great for that. Now we have Edna, our dog-faced guide, I mean, our always-correcting GPS ("recalculating" is her favorite word.") My son wanted to know how I knew which direction we were going. Yes, the sun helps in calculating east and west, but I also have a map in my head. Not in specific detail--no way. I couldn't sketch it (like the amazing Stephen Wiltshire who could detail the entire panarama of NYC after a 20 minute helicopter ride.) More like a sense of where we are going as if we are passing through rooms of a house.

I have a sense of where we are going with my son's treatment also. It's reassuring to me to know that we have good doctors in our corner. To our southwest is Dr. Trifiletti. To our east is Dr. Bouboulis. To the north is a Lyme Literate doctor I recently heard about. And in New Haven is Dr. Jones, the pediatric Lyme doctor whom we will see next week.

There's no future-telling going on in my house (though, on the paranormal spectrum, my husband did take the kids and some of their friends "ghost-hunting" and two of the kids saw a blue figure...go figure!) We make our own futures. I can't get my son better. But I can darn well find the best doctors for him. 

6 months ago, I made this appointment with Dr. Jones. That was before we knew my son had Lyme Disease. I had met parents while going for the IVIG who said that my son's symptoms sounded like Bartonella. I figured I'd better go to the best and get this checked out. Or, I could cancel the appointment. I nearly did; when we discovered the Lyme, we went to someone local and it cost a lot--how could I possibly go to both doctors? Then we went to the homeopathic doctor. But the local guy couldn't help enough. The homeopathy? Oh, this is a struggle for me.

What to do, what to do? Homeopathy is not a quick fix. It's what I believe in, more and more, each day. Let the body heal itself. It works. For other people. I've heard wonderful success stories.

We have seen some change in our son--we think it's because of the homeopathy (and acupuncture.) But he's still on a few medications from before which can interfere. And he's had this disease for so long--perhaps we use antibiotics again and just pummel it out of him?

Yikes. I've already seen the results of "pummelling." I don't know what's best for my son and neither do the doctors. We will see what Dr. Jones says and then weigh all our options.

We now have something else going for us. A Lyme team of experts. We found a social worker who specializes in Lyme Disease who has put us in touch with all the other players--some, hours away. But these people are the best. I heard about them from my friend at the beach as well.

The map in my head does not share with me where we are getting the money to pay for all these professionals who do not take insurance. That's when I start to get panicky feelings in the pit of my stomach. 

I must suspend disbelief. And make things happen, once again. Re-finance. Borrow. Finish the novel I've been working on sporadically for years--I'm giving the main character PANDAS! Sadly, I know that most books don't make tons of money. Make a movie of it? Sure! Change the plot? Sure! I'm fine with people saying the book is better. However, this map is of one of my dreams. Not sitting in the reality carseat.

The immediate map has me already taking off days from teaching (in September!) for these new appointments. The immediate map has us trekking through Connecticut as we see doctors. And my very immediate map has me waking up my daughter for camp and then getting ready for a bicycle ride with my husband!

"Faith is taking the first step even when you don't see the whole staircase."--Martin Luther King

That Thing with Feathers

"Hope is a garden
Of seeds sown with tears,
Planted with love
Amidst present fears."

--Mattie J.T. Stepanek

My son is back in his bed tonight. We finally rolled up the sleeping bag that greedily stretched all over the floor of my room. Phew.

Phew? My 11 year old has claimed to have walked out of the house at night when he can't sleep. For real? Just in case, my husband places tape on the doors. So far, the tape has not been broken. Just in case, I've been leaning the plastic child/dog gates across the stairs. So far, the gates have not been moved. 

Our little guy was in such a great mood this afternoon and evening that I found myself tensing up, expecting the "break" to come any moment. And then, I thought, I wonder if this is how abused people feel--waiting for their partner or parent to suddenly snap.

Snap he did, when I was on a [rare] phone call with a dear friend while folding laundry (always multi-tasking. Guilt decreaser and Time increaser.) Thump, POUND, thump, POUND on my door. I opened it to find him making faces. Tic-ing mouth, stretching wide. Eyes jerking with anger and out-of-controlness.

Still on the phone, I pushed him away from my room and extricated my arm from his grabbing hands. I closed my daughter's bedroom door, then shut my door again. And continued talking with my friend while he threw the plastic gate down the stairs, terrifying the poor dog. 

Now sometimes this has not worked out so well. There was the time he climbed out of his 2nd floor window. Now his dresser stands in front of that window. Kinda weird to walk into a room and see a dresser in front of a window--one visitor actually moved it away--but our entire situation is out of the norm. So, what the hey.

Tonight, somehow, he calmed himself back down--a first--and 40 minutes later, after reading with my daughter, I found myself cuddling my son and reading to him as well. I introduced Mattie J.T. Stepanek's Hope Through Heartsongs to a very sick 11 year old in dire need of hope. Who better to give hope than another child who understood suffering and was able to turn it into poetry? 

I read aloud the introduction, which talks about listening for your Heartsong, your meaning in life. And I asked my little guy what his Heartsong is. He said that it is to persevere, to get better. My boy is fighting. My precious fighter.

Mattie writes that sometimes we lose sight of our Heartsong and need to "borrow" from someone else. I reminded my son that when he was four years old, he had a Heartsong. He wanted to be an animal scientist. I wondered aloud what he might do when he is recovered. How he will happily live his life.

I also think about the kind of person Mattie J.T. Stepanek must have been--kind-hearted, wordly in a close-knit family type of way and word-wise. And he was a boy himself. He died right before reaching his 14th birthday.

Yesterday, after a dreadful, lowest-of-the-low mornings, I spoke with two amazing moms who have been battling the Lyme monster that threatens their children. They are seeing results--recoveries. Slow. Painful. And now their daughters have come far. Both women have used many different methods, from traditional Western Medicine to homeopathic and/or integrative. Both women shared hope and strength. I think I caught some of their Heartsongs. I know I caught some of their hope.

When we're in the midst of the madness, it's sometimes difficult to remember that some children do recover from PANS, PANDAS, Lyme. My son may never again be "perfect." But perhaps his imperfections will help him create something even more special within himself. And I pray that my daughter gains more strength than hurt from this as well. As for me, I've had so many Heartsongs that it's hard to follow them all. But I am learning how to hold onto my hope, my trust in something as invisible as these diseases.

“Where there's hope, there's life. It fills us with fresh courage and makes us strong again.”--Anne Frank

Bicycling, Sweat, and Tears

I am pumping my bicycle pedals through the thick, exhausted air, feeling a line of sweat trickle down the side of my face. Lovely.I've pedaled hard down the hills, not letting myself fly at anything less than 20 mph. I've put on a good show for myself on the climbs. But the day is heading toward lunch hour, the heat rising around me.

There is a slight upgrade, ever so insidious. I know from experience that this upgrade will go on and on for a couple of miles or more.

"What goes up must come down," I hear in my mind. I always have a tune in my head. Not a playlist. Just one tune that keeps coming back like bad food. It could be Call Me Maybe (indigestion) or Penny Lane (there's a dance studio on one route with that name--too bad I don't recall all the words. Penny Lane doesn't make it far beyond my ears, eyes and those blue suburban skies.) Today, because of the hills, it's Spinning Wheel. 

If I look at the road just the right way, and make myself believe it, I can convince myself that I'm actually riding downhill instead of up. Less stress, to ride downhill. And if I'm going downhill, there's no reason to ride any slower than, let's say, 13 or 15 mph. So I give it everything I've got.

I finish the 24 miles at a good clip, my average speed higher than ever.  I'm strong and I know it.Twenty years ago, I rode to socialize. On Friday evenings, I'd do the quick Greenwich 20 mile ride, then drive to dinner with my fellow cyclists. I'd wake up early on a Saturday to do a longer, hillier ride with another group of friends, acquaintances and people I hadn't yet met. I'd ride once more on Sunday mornings. Sometimes I'd rollerblade in the afternoons as well. I had energy, youth and no children.

Cycling is like my life now. Not in a California-girl sense, but in a metaphorical sense. I'm strong. I can handle my son's illness. I can pedal uphills. I can handle the distress it gives my family. I don't like to sweat (cry,) in front of other people. I can make major medical decisions. I consult with the most knowledgeable doctors and warrior mothers. I can ride 50 miles. Yes, I'm tired, but I can do this. Even if it takes me pushing myself 20 mph up those hills, I will make sure that my son is better someday. I will keep him alive long enough to believe it. I will bicycle through Europe with my family someday. This is a commitment, not a daydream.

I don't have to look at the road, mapped in front of me, as one big uphill. Instead, I can play tricks in my mind and pretend some of it is downhill. Going to an appointment or a meeting, I get into character. All that theater in my 20s taught me how to divest myself of who I am, what I feel and how to become someone else. I'm not cheating. I'm not lying. I'm simply the person who writes this column, the warrior mom who is determined to spread awareness of these diseases for all the children suffering out there, the woman who can quickly hammer away a 24 mile bicycle ride or a slightly slower 42 miles ride. I'm not bragging, as my daughter is telling me to write. I'm telling you that if I can do this, so can anyone. 

Twenty years ago, this is how I became Tuptim: sitting backstage, each night, I'd imagine myself being carried into Siam on a litter, my lover/boyfriend secreted among the servants. I'd feel the warmth of the sun on the long journey, smell the scented oils, feel the soft silk robes. My 20th century persona lost, I'd shyly walk onto the stage wondering--would the King like me? Be fooled by me? Would I ever see Lun Tha again? Could I adapt to this new life? 

Now I practice, once again, getting into character. Cyclist. Teacher. Writer. Someone with a new meaning in life. I purposely forget that I cried behind my sunglasses this morning after my son raged, threw away his medicine and sobbed that he's just a little boy/he can't help himself/no one helps him. 

Don't ask me about myself and really mean it.

Don't ask me how my son is doing today.

Don't get specific on me. You don't want me "talkin' bout [my] troubles. (It's a cryin' sin.)"

Because I'll break character. And break into tears. But thank you for caring. I truly mean it.

I want the world to know that these diseases are out there. I want to spread the word and help somebody else; helping somebody gives our ordeal some much-needed meaning.  I want people to donate to research so that our scientists can finally discover a cure. I want you to care. 

But I also want to be able to live my day, to enjoy that bicycle ride, to savor feeling stronger than I've ever been, both physically and mentally. Maybe it took a horrible act of illness to discover this about myself, but I'm the person I once longed to be. 

And sometimes, I just want to race down those hills, feeling the soft air hug my knees, the sweat dry from my back. I just want to, "Drop all [my] troubles, by the river side, Ride a painted pony, Let the spinning wheel fly."

"Tick tock, on the clock, But the party don't stop, no...."

"Oops," I say to my husband. "Gotta take the tick outa the fridge. And stick a paper towel in the bag with it."

"It's not a &%$ pet!" he answers.

And I thought I was going to sleep early tonight. Surprise, surprise. 

I am not sleeping enough. And it's catching up to me. Between my son who's got PANDAS and Lyme and my daughter, who doesn't, but who thinks that people are trying to break into her bedroom through her window every night, there's always someone to wake me in the midst of my happiest REM moments. And it's caught up to me. I feel like I've come down with a virus. I even skipped my Sunday bike ride. My happy time. It's bad, bad, bad when one doesn't reach REM-land for nights on end. In fact, I've even begun waking myself up. Beat you to it, kids! See, I'm up, I'm up! Last night, I plotted out the revised first chapter to my book. My brain was in high-gear.

So, smart adults that we are, my husband and I devise a plan. A positively perfect Mary-Poppinish plan that will reward said children if they can (A) go to sleep on time without complaint and (B) stay in their beds without waking us all night. Something that is hard for a child with PANDAS to do. Something that has been hard for his sister to do as well. And while it's sweet to have a child curled up against you in bed, it gets a little old, you know. My husband has joked that our daughter will be in our bed with her boyfriends if this doesn't stop. (And then, in the next breath, he says that she's not allowed to date until she's 65.)

Darling daughter blew it the second night. 2 AM and she was crying for attention. But my son's doing great! I'm so proud of him! He really wants Yogalicious and ultimately, a trip to the Renaissance Fair. Or so I thought.

"I have to tell you something," he told me, tearfully, tonight. "I don't really want to tell you because now I'm not going to get Yogulicious. I've been getting up in the middle of the night and I can't go back to sleep. I didn't want to wake you so I'm going outside."

Out the front door, mother and father...out the front door, in the middle of the night. OMG. The back door locks with a key which I can hide, if necessary. The front door has a confusing lock, but it's no longer confusing to a very confused 11 year old. And I thought the sustained-release melatonin was working. 

Back to square one. "Sweetie, you can wake me. You can even sleep on the floor of my room. But you cannot go outside. It's not safe. Someone might kidnap you."

"Did I lose Yogalicious and the Renaissance Fair?" Ah. The important things in life. Perchance, to be a kid again.

But wait--there's more: "And Mommy? I think I have some gum in my hair."

I part his very dark, curly head of hair to see one very engorged deer tick. My husband comes upstairs with his phone and we google the best way to remove this deadly tick (the method seems to change from year to year.) We get out the tweezers and...

So we get it in the bag, dripping blood. My son's blood. Gross, but what's grosser is what this tick might have left behind. We have to know. We put it in a ziplock bag and I figure I better put it somewhere cold. I open the refrigerator door. No, I don't want to place it with the butter. And not with the bottles of probiotics either. Let's just hide it behind the mustard and soy sauce.

When I post it on FB in the Lyme and PANDAS sites, I hear from my support group friends that putting it on ice isn't the thing to do. These friends generously give of their time to look up labs for me and to show they care. I learn that it's gonna run me a couple hundred dollars just to get this tiny tick tested. And what do we do if the tick has Lyme Disease? After all, my son already has it. Arrgh, the stress, the stress. I will worry about this tomorrow. As I bicycle a gentle 20 miles, perhaps.

My sweet boy is lying in my bed, fast asleep. Maybe we just leave him here tonight. And maybe we don't, considering he takes up most of the space. My husband wonders if maybe these nighttime excursions of his are in his imagination. After all, wouldn't our noisy dog get excited? Something to consider.

I must remember to breathe. And believe. All will be OK.

But tick tock, this party sure don't stop.