How Far We've Come

It's a heavily-white day with snow snuggling the tree branches. My home is warm and my dog is moaning. Not one frisky squirrel to bark at today. 

My daughter complains about having to do her homework by 3:00: "Stop torturing me! I'm just a little girl." She tries to get out of it by napping. My son is way too silly. Is he bored or is it a lingering virus in the air? Or both? In fact, the two of them just brought me my iPhone and told me to say hello to Siri. When I did so, Siri answered, "Hello, Lisa Chickenhead." Those kids.

How far we've come in four years. Wow.

Four years ago, my son had a sudden onset of tics and intrusive thoughts that should have keyed any medical practitioner in to the fact that he had PANDAS. But the doctors were clueless, my husband was sick and we thought it was some kind of reaction to the stress in the house. My son never showed any strep symptoms although my daughter had been treated for it. In fact, I think perhaps my husband had it that year as well, or maybe it was the year after that she and he kept passing it back and forth without my son ever showing any medical symptoms himself.

The problem is that it took nearly two years to figure out that my son did not have Tourette's or Bipolar disorder or anything that could be helped with SSRIs. He did not suddenly have ADHD and OCD and depression. He did not have a manipulative personality or a low IQ--all possible diagnoses as told to us by different doctors.

It took two years for us to get a diagnosis of PANDAS. And another 7 months for the diagnosis of Lyme.

In those two years, we tried cognitive behavior therapy, regular therapy, all kinds of medications, behavior plans, consequences for bad behaviors and so much more. In those two years, my husband and I questioned our marriage and our small daughter suffered from anxiety. In those two years, my son did not get much schooling. In fact, he could barely read.

At one point, we took him to a neuropsychologist who thought he was depressed because he couldn't meet our expectations because of a lack of intelligence. He was heavily on medication which seemed, to me, to be interfering with the way his brain was functioning. He was walking in his sleep. To my medically-under-educated mind, it seemed neurological. Why didn't the neurologist see that?

Now, my nearly 13-year old son is reading Schindler's List. He's already plowed his way through the Hunger Games and the Divergent series. Low IQ, my foot. He's even writing a novel, he claims. From what I've seen of other kids with PANDAS, it would seem that this disease preys upon children with high IQs. And divergent thinkers as well. Kids who have a high sense of right and wrong, who care about others and care about the world. Out-of-the-box thinkers. 

So, what are we doing for these kids? Getting them the help they need? Antibiotics, IVIGs, whatever else is required? No.

IVIGs are hard to come by. Insurance companies don't want to pay for expensive treatments for "rare diseases" that haven't been researched nearly enough. Even if the facts show that these treatments help.

The CDC doesn't even yet recognize chronic Lyme Disease. What am I thinking? Of course we're not yet helping our children!

If PANDAS is mismanaged in our health system, our children will be given the wrong medication and will end up with long-term mental health issues. If PANDAS is caught early, these kids have abilities and talents that can make our world a better place. If PANDAS/PANS can be managed, our children will have lives and will not be dependent. My son can be a writer, a doctor or scientist, a teacher, a therapist, a role model.

If PANDAS is mismanaged, our country will spend a lot of money for a lot of people. This goes for Lyme Disease as well. Children with Lyme Disease are treated for autism, for bipolar disorder, for anorexia. As a nation that is studying the brain, we need to learn to first look into the medical for any problems that are perceived to be a result of mental health. 

Had my son been born when I was a child, he would have ended up in a mental hospital. PANDAS is that new. Lyme Disease is that new, at least to researchers. Had my son been given different parents who didn't question doctors, my son would have ended up in a mental hospital. Had my son not met the right doctors two years ago, he would have ended up in a mental hospital. 

How fortunate we are despite our misfortune. 

"OMG! That thing on his door looks so sick!" exclaims my daughter about the blanket I hung up over her brother's door to cover the hole he put into it a couple of years back.

"What?" I demand. "That's not nice."

"Sick means good," she explains. "It's slang."

Oh. Sick is good, huh?

Yep, just another "boring" snow day. Boring is...soooooo good.

Silver Linings?

"She was frightened, and certain that she was incapable of the task ahead.... Then something began to change in the room.... She was larger than the feelings, she held the feelings in an embrace, and murmured kindnesses to them and comforted them..."  (From Bitterblue by Kristin Cashore.)

I am larger than my feelings. I embrace the emotions that swirl around in this PANDAS/Lyme cyclone. From helplessness as I lie on my bed with a headache, listening to my husband chat with the kids as he makes them lunch, to frustration. To anxiety about the amount of money we've spent on medical care. To fear over germs invading my home and my son's mind. To grief over the past, over his memories, over my memories. To worry over my daughter. To loss over not spending enough quality time with my husband, or anyone, really.

I am larger than my feelings. I murmur kindnesses to them and comfort them, as Kristin Cashore writes. And so I embrace my own brain fog, my apathy with the life I've been given these last few years, and I begin to accept. I do have Lyme Disease, much as I'd like to think that it's just an anomaly that both my children have it and I'm CDC positive and I've had chronic fatigue symptoms for years. It's OK. I can take off a Saturday and NOT do laundry, not think, not fret.

But so often, I feel alone. I have wonderful friends who try to understand our experiences, but they cannot. I have wonderful family who is there for us in many ways, but they're not living in our house. Only another parent of a child who is ill with a perceived rare and misunderstood neuropsychiatric disease truly understands, usually. The other parent who lives in my home is my husband. It's good we're still friends after all this tension.

As Catherine Woodwiss writes in probably the best article I've read about PTSD, "A New Normal," "Surviving trauma takes “firefighters” and “builders.” Very few people are both."

Her words make sense to me. People like my in-laws are there for us in times of FIRE. They're also there for holidays and visits. Some friends have taken care of my daughter when my son was very ill. Other friends support us on a day-to-day basis, just by talking, by sending an email hug. But if someone's not living our lives, not checking our bank accounts, not tucking a child into bed, that person really has no clue as to the amount of stress we are undergoing. And that is where the loneliness comes in.

"You're a fragile group of people. You need to be handled delicately." So spoke my friend's brother-in-law to her, one day, and she remembered the words, giving me permission to share them here.

We are fragile. He's right. We've seen too much, slept too little, had our lives altered in unexpected ways. We will never be the same. There is no going back and doing it over again. And some of us parents are ill ourselves.

We go to work if we can. But colleagues don't want to hear details on a daily basis. We paste on the smiles, do our jobs, then go home to messy houses or tantrums or tics or too many bills.

We contend with doubting doctors and ball-busting bureaucratic school systems. We act as pharmacists, doctors, psychologists within the home to our children. We rarely get out with spouses or friends. The financial toll increases the turmoil. 

I embrace you, life. Gone are the Broadway shows, the travels to Europe. I am saving my family and the time to do that is now. My life is not how I would have written it. But it is only part of me.

For there IS more to life than doctor appointments and bills. There is the sound of my son gleefully yelling, "I LOVE you, Mommy! I LOVE you!" There are paintings my daughter places on my dresser, with bright flowers and suns. There is the warmed-up, show-shoveled car in the morning, courtesy of my husband. There is the refrigerator stocked with food from my mother-in-law. There is the message in my in-box from a good friend. There is the Starbucks tea I had, last minute, with a friend last night, when I knew I had to break out of my self-pity and brain-fog and just get myself out of the house. 

Yes, there has to be some good in all this. Take my friend's brother-in-law, for example. He GETS it. My best friends understand because they have empathy. And they let me talk. I have met the most amazing, warm-hearted, persevering people. People I'm proud to claim as friends.

This ain't no crystal stair, to paraphrase Langston Hughes. I'm not one of those people who can pretend that all is lovely all the time. And I don't have much time for those who would minimize my experiences. I am stronger than the adversity that has struck us. Doesn't that count for something?

"The world will break your heart ten ways to Sunday. That's guaranteed. I can't begin to explain that. Or the craziness inside myself and everyone else. But guess what? Sunday's my favorite day again. I think of what everyone did for me, and I feel like a very lucky guy."--From Silver Linings Playbook.

I suppose that my life is writing its own course now. I have choices. And one of those choices is to try to embrace it with all of its ups and terrible downs, rather than fighting it and wishing I had something else. There are some dreams I need to let go. But there'll be new dreams, perhaps. And really, who knows what the future truly holds for us?

Science, Psychics and Skepticism

I was bred to be a skeptic of the "paranormal" as my son calls it. Never truly believed in psychics. Sure, the whole idea fascinates me, but for every remarkable story about a psychic finding a missing person/body, there's a story about a hoax. Anyway, I was taught that everything can be explained by science.

Perhaps my parents just wanted to soothe my worried soul. After all, I was the one who, even at 19, called home upset because I'd been to a friend's house and heard a late-night "true" ghost story. I had to sleep under a heavy blanket the following night, despite it being a 90 degree summer with no air conditioning in the house I was sharing with three other students in Worcester, MA.

If psychics don't exist, how did Tracy D., Empath nail the fact that my son has a sinus infection?

Tracy's my friend. I spoke with her last weekend by telephone, from several states away while she read Tarot cards. She tells me that she has been psychic from a very early age and she has stories to prove it. I have to believe her because she's my friend Tracy--a compassionate, creative, loving person who gives so much to the PANDAS community and her children. But I didn't really BELIEVE.

Until now.

Tracy tells me that she can sense when a friend's nonverbal, diabetic son is low in sugar and will telephone that friend. She's accurate a good percentage of the time with all her calls. She also says she can teach anyone to be more open to receiving messages. She says that if you go to 5 "psychics" or empaths, you should get the same reading each time. But events are open to change since people have free will. Hmmm. Not so sure I want to be open to receiving messages.

But, considering the stuff I've lived through, maybe that's not so bad.

My son and I discussed this on the way back from the doctor's office this week. He is 12 and totally believes that we all have some type of guardian angel and that there are spirits. That's cool. Shivery cool.

What kind of energy surrounds us? What is out there that we cannot see or fathom?

I'll tell you what makes it hard for me to believe in G-d and guardian angels: the extent of suffering I see. The Holocaust, where people were tortured, beaten, starved and then died. Rwanda. Our children who have PANDAS and are losing their childhoods. 

Buddhists believe that suffering is part of life. Jews have suffered for centuries, as my Catholic friend pointed out. 

Perhaps I need to study Buddhism. When I have time, after my child recovers, I'll study it. When I'm no longer researching immunology and neurology, I'll take care of my own soul. When I'm no longer miserable, I'll have time to figure out how to not be so miserable. I'm trying to joke here...haha.

Either way, there's some kind of energy that surrounds us. Some kind of energy out there in place. It had been said that there is power in prayer--in many people praying/thinking/sending silent love for one person. 

My son tells me that Joseph (as of Joseph and The Amazing Technicolor Dreamcoat) was the first psychic, dreaming of events to occur. He dreamt that there would be seven years of riches, then seven years of draught.

Well, that sounds familiar. I think we're in the seven years of Job right now.

And despite me quoting Biblical stories, despite me being unable to write out the name G-d, I don't really believe. I want to, oh, I do.

The energy that keeps me going is the positivity that I find in people. Yesterday, a group of us PANDAS families met to go ice-skating. The children accept each other and enjoy each other in a way that they wouldn't with other kids. They're all going through the same thing. Some have tics, some are hyper, some are silly, some are quiet. They are learning to look beyond the surface, beyond the symptoms and to value the person underneath, or the person who is struggling to emerge from the deluge of symptoms. I have to say that there's this innate love for one another and it's beautiful.

I see guardian angels all around me. When I was 31, I went to Italy for ten days by myself. Every day, I met someone with whom I would spend time, or someone to walk me to my next location. A mom and two adult daughters who adopted me for the day in Sienna. I felt that someone, something was taking care of me. Of course, that was in the seven or so years of riches. 

Too many days now, I feel alone, except for the other parents who experience the same thing as we do. I wish I whole-heartedly believed that all would be better someday. But I do not. I was taught to be skeptical. Realistic. Scientific. But science doesn't yet have many answers for PANDAS/PANS or Lyme Disease.

Then again, at this point in time, many doctors argue that PANDAS and Lyme require clinical diagnoses. The scientific definition for both these disease are way too narrow. 

There is a lot of anecdotal evidence in favor of outside forces, energy, psychic abilities, recovery through belief and more. I shouldn't discount it.

For today, I know that Tracy D, Empath, diagnosed my son correctly, using Tarot cards, from another state. And having a little help can go a long way. There's a lot more to this world than I ever before accepted. It's time to start believing.

Prisoner of PANDAS

She tugs at the iron bars for the fourteenth time. They're solid and she sags against them. Each bar is as wide as her arm and separated from the next just enough to allow her to view a sunlit day, blue skies, green countryside, and healthy kids playing in the distance.

Bars separating her from the world. Bars permitting a view of freedom but no escape.

The dungeon is dust-covered, with pipes showing through a hole in one wall and cracks in the ceiling. She shivers in the cold, damp air.

Could it be just last week that she was laughing with friends? Dressed up with places to go? Wearing high heels? Now, it's two-day old hair and sweatshirts. Now it's listening to tears from the other cells. Or screams. 

People have gone through worse, she reminds herself. She's not being tortured daily.

But...this adventure is not halfway through yet and that happy ending is a long way away. There's more torment to come. The torments are lining up. Like all the financial charges she's incurring to be in this dungeon of disease. Like having to hire an attorney. Like being separate from friends, unable to travel or achieve her goals and dreams.

For now, there is no escape. She's the Prisoner of PANDAS.

She had had a reprieve. An 8-month reprieve. For the first seven months, she waited, fearing they'd find her and whisk her back to prison. She constantly relived the previous year and worried that she wasn't yet free.

When she began to believe that perhaps something had indeed changed, she danced on the outside of the illness and its effect on her family. She dallied with the notion that they were beating it. For the last few weeks, they lived (somewhat) on the outside of the hellish halls of PANDAS, always knowing that one tiny slip would send them spiralling back.

It was so easy to fall back into old routines, happy routines. To rejoin life. To act like everything was once again normal. It was deceivingly and seductively simple. And life was beginning to taste so sweet again. 

It didn't last long.

She ponders this as she sits in her cell, apart from her husband, worried about her children, all of whom sit or pace in other cells. This isn't the life she would've chosen at all.

She has fought like crazy to pull herself out, to pull the entire family out, but to no avail. She questions as to how she's going to pay the monetary bills. How she will pay the emotional toll. How she will hold on for years of this. She's a fighter but her strength is fading without happy sunlight.

A paper airplane shoots in through the open bars. She runs to the bars and looks out, but no one is there. She turns and picks up the paper, unfolds it. And reads, "Hold onto hope. There is a purpose to all this."

The Co$t of Lyme and PANDA$

Once upon a time, when I was trying to find the "perfect man" (for me,) I went out on a blind date with some highly recommended guy to a nice, local restaurant. I think he was a chiropractor or a dentist...I don't recall which. I don't remember what he looked like. What I do remember is that he took out a small bag of 17 vitamins which he swallowed before eating dinner, telling me he took these supplements morning and night. Weirdo. I never saw him again.

And here I am, more than 17 years later, with my own bag of vitamins and supplements. Oh, life's ironies! Who is standing in judgment now?

 For a long time, my immune system was strong enough to keep the Lyme Disease in my body in check. But last spring, the stress of the last three years caught up to me, punched me in the gut. I finally got tested. Positive for Lyme. Daughter: positive for Lyme. Son: PANDAS and Lyme. 

So, between the three of us, we now have our own little packets of supplements and more. It's a royal pain in the neck to remind everyone daily, "Did you take your medicine?" It's a bigger pain in the wallet.

Wow! The NEW monthly fee for the three of us (and this doesn't include everything, or my husband, who will remain silently private):

Banderol and Samento for 2 people per month (they each take about 30 drops per day): $100
Prescription meds for son: $7.50 plus $60 plus $15.00 plus $7.50: $90/month
ViraStop about $12/month unless we double it b/c of infection: avg $15
Adrecor $40/month
Vitamin D for family $10/month 
Klaire Labs probiotics $25/month unless we double it because of infection
Klaire Labs sacc $20/month unless we double it because of infection
Probiotics for daughter and me: $25/month 
Vitamin C: buffered; $10/month
L-Theanine $10/month
Magnesium, etc. supplements $10/month
Leukovorin for 2 people $15 RX/month 
Enhansa about $20/month
Grapefruit Seed Extract about $11/month
Artichoke extract capsules $6.00
Plant Sterols about $10/month/month 
Byron White Formula $60/month 
NT-Factor Energy: $30/month 
Serrapeptase $30/month 
Burbur $10/month
Activated charcoal: $3.00/month 

*Prices may differ, depending upon retail outlet. I guesstimated some of these.  

So, if you like math, you can see that this adds up to more than $500. Per month!

Where have all our dollars gone? Long time passing. To medical care, every one.

These are out-of-pocket expenses. 

The downside? No trips to Disney. No Broadway shows or concerts. No splurge spending. No educational vacations in Europe. Fretting over mortgage payments. Empty bank accounts. Stress. Taking on more work.

The upside? These medicines and supplements are keeping my son in a great place, for today. After several years of holding him while he disintegrated, he is BACK! When he encounters germs, we double the Virastop, probiotics, add some other supplements (not counted in the above list,) and see recovery. Amazing. This is the best autumn we've had in four years.

The other upside? These medicines and supplements are helping my daughter and me to fight Lyme Disease. We will overcome this nasty spirochete.

Next stop: Homeopathy for my daughter. Not sure if that will save us any money, though.