Flying in V Formation

Last week, my son and I bicycled 70 miles over three different days. He's a strong rider and he also tends to push himself. This is a kid who biked 20 miles when he was 6 (he'll correct me and say he was 5 years old.) But I do want him to conserve some energy.

So, I was trying to teach him to draft. I learned drafting from my husband, who, long ago, before we met, used to race and ride with a team/club. Basically, it's the same type of thing that birds do when they fly. There's a leader, who is strong and removes some of the drag from everyone else, who follows in his or her wake. Think of it as rollerblading right behind a moving truck (but don't try it!) The moving truck would cut the wind, and its movement alone would suck you in a bit so that you had less work to do in terms of using up energy for movement.

The problem with my son is that: 1. He's 12 and a little impulsive (think: sudden stops.) 2. He does not have shoes that click into his pedals yet, although his dad and I think he's ready for them. 3. He's faster than I am on the uphills and slower on the downhills.

The sudden stops aren't that much of a problem anymore. Years ago, on a "warm" February day, I toppled into a watery ditch because I was following him a little too closely and couldn't unclip my feet from my pedals when he came to an abrupt halt. 

The shoes, the shoes...he's expending a lot of extra energy by wearing regular sneakers and not being able to pull up on his pedals. Toestraps would help a bit, but he tried them and didn't like them (they're not like good shoes anyway.) Being that he's an avid rollerblader and skateboarder, he has good balance and should be able to handle clipless pedals without taking more falls at stopsigns than I have. 

I would very much like to get him kneepads for that day, though. He'd never wear them. 

Perhaps I need them more! I admit it. I have either forgotten to remove a foot or leaned too far over on the side in which my foot is still clipped in. The other day, and I don't think I can claim "Lyme-brain" for this, I shifted up instead of down while going up a steep hill--a shift I've done so many times correctly and automatically--and I could not keep my bicycle rolling. Oops. Crash.

Back to drafting. While teaching my son to draft, I got to thinking that the only way we've all gotten through these years of PANDAS and Lyme is through drafting. My husband and I are a team and we take turns being in the lead. We each have our tasks. I don't write a lot about my husband, as he is very private, but we had days when I wasn't sure the marriage would last. There were a few months in which I thought that if we did not have kids, I would have been outa there. Of course, many of our problems stemmed from these kids. And how we handled the issues.

We're moving torward our 15 year wedding anniversary. We have come through horrendous times when no one believed our son was physically sick. We have survived not giving or getting good gifts for previous anniversaries, not going away alone for a week or even a weekend without kids--ever. But that's they key phrase--we have survived. We have done so by drafting off one another.

When we're both tired and stressed, we run aground. We don't have a lot of family around who can step into any type of lead position. But we have other people who have assisted--our doctors, our educational advocate, friends, a camp scholarship for my daughter that was suggested by a colleague of mine. This is our team, and we carry ourselves like one of the finest bicycling teams sans steriods. 

[After all, steroids suppress the immune system and allow borrellia to live strong and prosper.]

Everyone going through this type of ordeal needs a support system, a team. Everyone needs to take a breather for at least a minute, an hour, a weekend? I don't know how some of the single parents in our PANDAS support groups make it through--but they do--they find an inner strength. And someone to draft off of, even for a few minutes.

For me, I am happy to come home to my husband's dinner. I am relieved that he remembers the appointments that our kids have. He is happy to leave the letter writing and the calling of doctors to me. We trade off, and when complete fatigue or PTSD smack us hard, the other one is ready to step in. 

Someday, my son will need to handle whatever medical conditions remain with him. We will teach him slowy to plan out his meds and to follow routines. But in the meantime, we'll teach him how to get his front bicycle wheel close to our back tires without bumping us, so that he can aerodynamically slice that bike through the air and fly.

Summertime

by George Gershwin

One of these mornings
You're going to rise up singing
Then you'll spread your wings
And you'll take to the sky

But till that morning
There's a'nothing can harm you
With daddy and mamma standing by

Back to Basics

A summery bike ride along the rail trail with my sunny bunny.

Sure, it's 91 degrees and climbing, with air thick as a sponge, but I feel the slightest breeze. My Cat-Eye is suddenly not working, so I have no idea how fast (or slowly) I'm pedalling nor how many miles we've done. And it's OK. 

I don't need to check the mileage every twenty seconds. I don't need to maintain any certain speed for today's ride. I will simply enjoy soaring down the hills, the steady climbs of the uphills, the trees with their branches steepled above our heads.

My twelve-year old zips by me, calling out, "On your left!" A huge smile crosses his face. He rides like an adult, like his dad, with this smooth, athletic confidence. His bike is nearly the size of mine, with thin road/racing tires. He has black biking shorts, a bright red shirt, gloves and a helmet. He's my little pro.

You wouldn't know to look at him that he developed a new tic last night--in his throat. And it's going off as we ride, distracting him. But no, he's not up for turning back yet. He's happy and strong. 

We ride by the bullfrog's Rubberband Band camp, but the frogs are all sleeping to evade the heat. We ride by Snake Territory but fortunately for me, the snakes are slithering in the water, avoiding the sizzling blacktop of the path. We ride over the Potato Chip Path, nicknamed by my son because the road there is choppy and broken.

We approach a stopsign and my son darts ahead, saying that he will see if the road is clear so that I don't have to stop for once. On his signal, I fly down the hill, cross the next street and pummel up the next hill. Nice to not be the lookout always.

I love bicycling--can't you tell?! I especially love sharing this sport with my son. I treasure each moment, knowing that it can be suddenly taken from me, knowing that there are other teenagers out there who are not doing well after a period of relief. 

My son is in a good place and I'm so grateful and appreciative...and apprehensive. How long will it last? Will it change as puberty kicks in more? What effect will hormones have upon his Lyme and autoimmune neuropsychiatric disorder?

I've had a lot to think about this week. I've got Lyme and I'm not sure what that means for me yet. Perhaps I've had it for a very long time and passed it onto my children. I grew up playing in Connecticut woods. Either way, my body is strong enough to be fighting it. But there is something that kinda terrifies me about it. What if it is slowly preying upon my mind? First, fatigue. Then, anxiety. What next? I've seen what these diseases do to my son.

I know how much the doctors cost. And how little we have in the bank. But, there are days when it's good to not even think about all that. To not know how fast or slowly I'm riding, to not look at the mileage. There are days when it's great to just sit back and enjoy the ride. All sickness aside, my son is one of my best buds. I told him that I would like him even if he weren't my son. But I'm glad he's mine and I can hug him as much as I want.

As we ride, we chat about ways to get his little sister more interested in bicycle riding so that she can join us in our adventures. I promise to take my son for a cold drink after the ride. Little things. Happy things.

For today, I'm not too tired to bike ride. I absorb the green of the leaves, the joy of my boy. I forget nearly everything else for a few moments. It's all good.

It's my turn

"You know what I'm going to do this winter?" asks my son. "I'm going to go out at midnight when it's snowing and look at the snow. Have you ever done that?"

"Yeah, of course," I answer. "Not necessarily to look at the snow, but I've been out at midnight."

"Really? When?"

"When I had a social life. I'd go out with friends, to parties, whatever, and come back around midnight or even later sometimes."

"Do you still have a social life?" he asks.

Ummm.

I used to be a night person. Stay up late, sleep into the morning. Go out with friends. All that changed when we had kids. And then it changed a ton when our first kid got sick.

I guess I've changed, too. Now all I want to do is sleep, sleep, sleep.

I wear a cloak of fatigue. It feels like one of those anti-radiation, lead aprons, and it weighs me down so that all I long to do is cuddle into my comfy bed. 

Still, I run from sofa to basement with its visible black mold (hey, it's a 90 year old house) to throw more laundry into the washing machine, then scoot 2 floors up with a basket of freshly dried clothes.

I forget to turn the basement light out but cannot even imagine walking back down again. 

Stress has caught up with me, I know it. Sick kid. Now a second kid with some Lyme bands/symptoms. Struggles with my child's school system. Bills. Teaching the Core Curriculum in another school district and being evaluated based on how my students score on standardized tests. Worrying about a creative, entrepreneurial husband who is home with our sick child when he could be earning more very-much needed money.

I feel burned out. It's hard even to plan to have people over--but fortunately, my husband is a good cook and a good planner (if you're a close friend and reading this, we just don't have people over lately.) I haven't yet cleaned out the front closet. Or the refrigerator. It's summer vacation and time to go to doctors and do chores, as well as time to see friends. I need to relax.

Why the heck is my kid talking about snowflakes? I want big waves and sand!

I went to Jones Beach and got burned.  I was so careful to keep my son covered in sunscreen and somehow I missed parts of my own limbs. Oops. I have the weirdest looking tan/sunburn ever. So, yeah, burned and burned out. But my son is doing better. Hallelujah!

Doctor's office called yesterday. Surprise, surprise.

I have Lyme Disease. Me. In a way, it's not totally unexpected. For years, I've been saying, "I'm tired," or "I'm exhausted." I can bicycle many miles. I can push myself to teach and then come home and take care of my children. But I push push push. I always did and I always do. Keep on swimming, keep on swimming. 

Really, I must be pretty healthy. The strange Lyme irony is that the sicker one is, the fewer the Lyme bands that show up on a test. So the sickest person will have a Lyme test that is negative. Why?  The body is so inundated that it stops making antibodies. The immune system is compromised. It's possible that this is what resulted in my son's autoimmune neuropsychiatric disorder.

Well, my Igenex test is lit up like fireworks. In fact, I'm CDC positive. So, I can't be THAT sick, can I?

Having Lyme Disease myself is all fresh and new for me. I have yet to decide my exact course of action, but more than a year's worth of research has shown me the right path. I'm upset, but more about the finances than about my health. Hey, the symptoms were there already, for a long time. Now I might have some recourse. And I don't have even a quarter of the symptoms many of my friends have. So, except for the fact that I'm allergic to nearly every antibiotic, I'm one of the lucky ones. 

About that snow? Not ready. I need to enjoy my summer. Maybe I no longer stay out till midnight, but I still enjoy a good bike ride and a great day at the beach. And instead of snowflakes, I'll soak in the sight of fireflies and fireworks. And get to work on this stupid spirochete. 

What Schools Need to Understand

PANDAS is a medical disease. NOT a psychiatric one. 

What you see at school is often not what we get at home. My child tries to hold it together in school. He hides his symptoms from you as much as he can. Stores it up until he comes home. And when he's feeling really badly, he can't even make it to school. He can't concentrate, can't think, can't learn. And then he feels stupid.

Any stress affects my child and can trigger symptoms. That includes feeling different at school, taking tests, being asked to do chores, being asked to go for a long car ride, being asked to take a shower when he's having sensation issues with water.

You see, my child doesn't get the flu anymore. Or strep. Or a cold. At least not the way other kids do. Instead, when my child is exposed to germs, his own antibodies attack his brain instead of those germs. The result isn't pretty. The result looks psychiatric. Psychotic. Rages. Laundry baskets flung. Doors broken. Stampedes. Tears. He's not himself. His brain is under attack.

If my child has a fever, call us. That's GREAT news! Our child doesn't get fevers. In fact, his usual body temperature is low. Sometimes when he has a fever, his symptoms disappear. Well, it happened once. He doesn't get fevers.

My child has symptoms, not behaviors. A behavior plan will not really help. But if he's having a tough day, he needs a healthy time-out. A visit with someone who cares about him. At home, I'll hold him. At school, he needs to feel comforted. If he's ticcing a lot, he will be embarrassed and will need to do it in private. Help him find a quiet room. 

If he's not doing well, there might be another child in his vicinity who is sick. Or is a strep carrier. You'll never know. Strep carriers don't wear a big Superman-sized "S." 

My child has OCD and doesn't like to do the wrong thing. He worries that people are angry with him. But he's also a normal kid who is testing his limits and sometimes needs consequences. It has taken us, as parents, a long time to correctly determine between a symptom of the disease and normal childhood behavior. As an educational professional, please first assume that anything you see is a symptom. You don't live with him. You don't know him. Ask us first. 

His disease is invisible to his friends. They don't understand why this once-popular kid now has occasional outbursts, why he might suddenly rage, why he's not funny and easy-going. Some of our friends work with their children to understand that when our son is angry, he's probably not well. When this happens, his close friends understand that he needs space, needs home, needs to recuperate.

But most people don't comprehend this. They just see an obnoxious kid. 

My child will not share his OCD, his fears and intrusive thoughts with you. But these symptoms are there. 

My child needs to wear a hat with a brim because he now has sensation issues. His body is so fragile that the overhead lights bother him. Crowds bother him. Sometimes, showers bother him. Too much noise can bother him. And if he's flaring from exposure to germs, the sensations are even harder for him to handle. 

But he doesn't look fragile. He's a fast runner when his joints don't hurt him. He flashes a quick smile. His arms are getting stronger. When he strikes out at home, he can be hurtful. His fragility lies in the fact that viruses, sensations, stressors, bacteria can all set off an attack on his brain. 

My child's brain doesn't work for him the way he needs it to. He will tune out. It's not ADHD but it can look like it. It's not on purpose. You might need to repeat what you just said.

If my child doesn't speak to you, it's not rudeness. Ask him how he's feeing. One of his recent teachers realized this and asked him to at least knock on the door of the room in which he closeted himself so that she would know he was OK. She got it. A previous tutor (not a teacher) got angry with him and told him that his parents didn't raise him to be impolite. Our kid couldn't even defend himself. The words were all gone. And because he was ashamed, it took him days until he told us.

You might need to give him a word bank because he has trouble with word retrieval. His memory isn't as good as it once was.

He has visual/spatial issues. Math is hard for him. Plus he missed a lot of instruction over the last few years when he was sick.

Hand-writing is tough for him. He needs a computer. He needs to be able to dictate sometimes. 

Reading is harder for him if he doesn't feel well. He has trouble tracking. If he's ill, you might need to read to him.

But he's smart. Oh, boy, is he bright. So challenge him, but not with worksheets upon worksheets. With ideas, with arguments, with concepts. He's creative. You need to be, too. Because creative projects overwhelm him.

Yes, this kid will completely shut down. He needs assignments broken into chunks. He needs to achieve success. Often, he needs someone to walk him through, to figuratively hold his hand.  

Remember, this is a kid who has trouble walking into a supermarket. A kid who doesn't want to leave the neighborhood anymore. Remember, this is a kid who was once fine. Social and healthy. 

He will be again, someday. And that's our job, the parents' job. He will miss school because of all the doctor appointments. We will miss work. We will be working on saving our baby. We need your support.

So please be kind. To him, to our family. Because there are many tears that you'll never see. 

And educate him. Because this child will become an adult who will succeed. 

Maybe he'll even find a cure for PANDAS. Or become an educator.

-Lisa Kilion

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.