Her Story

In honor of Women's History Month, I ask my fifth grade students to interview family members and then write about the life of a deceased female ancestor, one who perhaps would never make it into a history book. Stories come to school about women who escaped the potato famine in Ireland for the neighborhoods of NYC, only to raise seven children on little money, about women who were girls when they hid from Nazis, about women who were forced to live in the "Creole" section of a Pennsylvania town because neither African American neighborhoods nor Caucasian neighborhoods would accept them. 

My students write of the frustrations of women who longed to be teachers or doctors, but didn't have the money or education. Of women who went to work after their husbands died yet managed to raise and feed five children besides. They write of women who volunteered during World Wars and women who lost way too many family members to diseases that we know how to treat nowadays. 

I started thinking...what if one day, our children's children are asked to write about us? How could they possibly understand the challenges of raising a child who suffers from PANDAS and Lyme Disease? Of the social, financial and emotional impact it has on a family? When today is history, when fifty, seventy, one hundred years have gone by, will Lyme be recognized? Will it be treated with the same respectful fear as is brain cancer? Might there even be a cure? Will PANDAS be a language spoken by every pediatrician and immunologist? Or will it be relegated to history books, a thing of the past?

One of the lessons that come from investigating these life stories revolves around the characteristics that enabled these women to persevere. Whether one is adopted or raised by birth parents, the traits that have defined ancestors are often taught to future generations.

May we have future generations. I want to be a grandmother someday. But that's too far in the future. Some of our days are spent just keeping our children alive. What kind of future will my child have when his present is being stolen from him? Will he be able to raise children? I can't worry my head about those issues, although they do creep in from time to time. If my children have children, they may write about us as being those tenacious parents who traveled from doctor to doctor in search of treatments for our children, as self-educated parents who made use of the internet to learn as much as possible about topics such as moleculary mimicry, as dedicated parents who loved their children and sacrificed all to build a future.

Write that in the history books. But it still doesn't buy us back today.

Fraction Fun and Captivating Stories

This is a different kinda blog but I'm so thrilled at my discovery that I have to share the good news. My kids can't wait to learn fractions with me! Oh yeah, I'm teaching them one of the world's most detested subjects and they are eating it up. 

Literally. I'm teaching with candy. Wait--don't stop reading--it's not that bad! This is how it works. There ain't no paper or pencil (and grammar don't count neither.) They each get twenty jelly bellies or chocolate chips. Or, a couple of marshmallows which require good skills with a sharp knife. I ask them to find 1/20 and to pick up the correct number of candies. Then, they get to eat it.

We proceed, from 1/3 of 18, to 2/3 of 18 ("of" means multiply; denominator as in division--separate the 18 candies into 3 piles. How many are in each? Now, how many candies are in 1 of the 3 piles? How many candies are in 2 of the 3 piles? How many in 3 of the 3 piles? What's 3 divided by 3? 1! Yes, 18 x 1= 18. You may now eat 1/6 of your jelly beans. And so on....

Until we're left with maybe 4 and then I tell them they can eat 1/8. or 25% Haha! My son can figure it out!

Yep, they like this so much that I'm trying to do it nightly for maybe 5 minutes. We're building math sense. Playing with candy in this way slices through my daughter's own math anxiety. It's working so well that I decided to take it into my 5th grade class. I tried it out today with a few kids (each brought a bag of 20 "manipulatives.") Oh, they were smiling, laughing, learning! The rest of the class peeked on, busy with their own activities, knowing their own mini-lesson was coming.

Bragging here: I am so impressed with my son. He has great number sense. Don't be jealous. He won't pass any tests, win any medals, bust any curves. His brain is injured--temporarily, I pray--from Lyme Disease and PANDAS. How do you spell E-N-C-E-P-H-A-L-I-T-I-S? (And if I spell it wrong, as I'll sometimes do on purpose in a class, can you locate the error?)

I started slowly, given that my son has lost his math ability to PANDAS and Lyme brain fog. And my daughter is two years younger and just really learning fractions. Now they didn't wanna quit. I'm sure my kids will get bored at some point, or not want to make their dessert last for fifteen minute. For now, however, I'm delighting in my success, especially as we have so many negative symptoms at the moment. OMG, so many. How do you spell F-L-A-R-E? My son has a flair for being in a flare.

Homonyms are so punny.

Talkin' 'bout language arts, my son read the entire Chronicles of Narnia when he was 9 years old, even with undiagnosed PANDAS. I've always had a rule that my kids have to read the book before they see the movie (hey, books are ALWAYS better. Except for Schindler's List, which stuck faithfully to the book--I know, I read it after seeing it--but kids can wait another ten years before seeing that.) 

And he was totally into Shakespeare. Read the stories (not the original plays; he was 9.) Watched old movies. Came with me to see adult performances. Waited until 11 PM one night with excitement to see the sword fight at the end of Hamlet.

But then he stopped reading. The neuropsychologist has recommended a vision specialist because the Lyme Disease has affected his visual and spatial processing--both on an eye-level and a brain-level. She is suggesting books on tape.

For the last couple of years, I have been reading to him nightly because I felt that it sometimes was the only education that was sinking in. When he's relaxed, he's open to learning...vocabulary, comprehension, inferencing. We have ventured through at least two of Christopher Paul Curtis's books (one of my favorite authors in the world,) The Cay, Mrs. Frisby and the Rats of NIMH, When Tia Lola Came to Stay, The True Confessions of Charlotte Doyle, Wonder, Holes and many, many more. Now we are engrossed in the modern nonfiction classic Grayson, the story of Lynne Cox, a long-distance swimmer, who finds a lost baby whale in the ocean. I highly recommend all of the above books.

With my daughter, we've made our way through a few Roald Dahl books and now she's reading more on her own. She and I are reading a nonfiction book that I got from Scholastic about the origins of toys (inventions.) I have a lot of guilt over not reading with her as much as I read to my son. She's healthy. She's happy usually. I love spending time with her, but my attention often goes to the child who is distressed. It ain't fair. Not at all, at all.

But there's not much I like better than cuddling with one of my kids and reading, sharing an amazing story, teaching them how to escape into another place, another time, with friends who are always there when you open the book. 

My own kids are my toughest customers. If they like something, it will definitely fly with my students, who are kind of forced to comply. 

It's getting late. If I'm lucky, the melatonin will kick in quickly tonight while I'm reading Grayson. I'm done. 

P.S. I have at least one spelling error in the above essay. Can YOU find it? 

The lot of us mortals: doctors and meanings in life

"How strange is the lot of us mortals! Each of us is here for a brief sojourn; for what purpose he knows not, though he sometimes thinks he senses it. But without deeper reflection one knows from daily life that one exists for other people — first of all for those upon whose smiles and well-being our own happiness is wholly dependent, and then for the many, unknown to us, to whose destinies we are bound by the ties of sympathy. A hundred times every day I remind myself that my inner and outer life are based on the labors of other men, living and dead, and that I must exert myself in order to give in the same measure as I have received and am still receiving.”  --Albert Einstein

What is my purpose, then? I struggled with this question throughout my teens and twenties. After undertaking internships in high school and college, I was sure that working with children with special needs was not part of my meaning in life. I had loved being a camp counselor but when it came to children with severe autism and other disabilities, I was the wrong person for the job. From once thinking I'd be a primatologist (apes!) to then planning a career in child psychology, I instead pursued...business.

Business was sooooo not for me. From an early age, I had written poetry and stories. In my twenties, I overcame my shyness to discover I could sing, which led to community theater, community opera and eventually the courage to return to school to become a teacher.

When I was blessed with the joy of motherhood, I never suspected that eventually, my primary job would be to keep one of my children alive while keeping the other child untainted by the first child's Jeckyl and Hyde symptoms. Life wasn't supposed to be this way. Life wasn't perfect to begin with, but this outdid it all.

For a while, we had it all, finally. A wonderful teaching position. A happy marriage. The white picket fence--literally. The son. The daughter. The dog. But then my almost 9 year old son got sick with PANDAS. And was misdiagnosed for a very long time.

Yesterday, I met about a dozen parents at a PANDAS/PANS support group meeting. It was a meeting full of relief (that we're not alone,) understanding and a celebration of the strengths we all have had to dig up to deal with this disease. My heart melted for everyone and I found camaraderie with all. Many of us have seen the same doctors--after all, there aren't many doctors who will venture out of the security of the AMA and risk being sued to treat kids with PANDAS. The destinies of our children "are bound by the ties of sympathy" shown by a handful of courageous doctors.

Scary thought for today and everyday: the destiny of my child remains unknown. (As does the destiny of my life savings, after all this is done, if ever it is done.)

Before my family met our son's PANDAS and Lyme specialists, we had consulted with at least one dozen doctors who did not have the knowledge to help us. Worse than the doctors who neither knew about nor believed in PANDAS were the ones who had heard of it and thought they knew all the answers. Like the neurologist who mentioned PANDAS to us, yet ran no tests, and after prescribing ten days of a low-dose antibiotic, said, "Tourette's or Bipolar."

Interesting that those of us in the support group--people from NY, NJ, CT--have all been to many of the same doctors, no matter the distance. Why? Because few doctors are willing to "go the extra mile" and diagnose a disease in which many don't believe. Because few doctors are willing to prescribe antibiotics for more than ten days at a time. Becasue many doctors are afraid to even speak the word, "Lyme" when they see that other doctors are attacked for treating it.

There are doctors out there who treat PANDAS and/or Lyme Disease. There are doctors who work from early in the morning till late at night, willing to take on new patients who have great need. There are doctors who are willing to take a day from work when they have a 7-month waiting list for new PANDAS patiends to go to a state capital, as one did last week in Connecticut, to testify that we need the government to recognize this disease so that our children can be saved. There are doctors who are not afraid or too egotistic to consult with colleagues to find the best course of action for a disease that differs by child. There are doctors who email, text or call when the patient is in dire need of help.

There is one doctor who, this very week, goes to trial, although hundreds of young patients desperately need him. I don't mention names because any doctor who circumvents or fights the system is liable to being investigated by the federal government. It is well-known that many of our Lyme Literate doctors (LLMDs) are investigated because the CDC doesn't yet recognize chronic Lyme Disease. And our PANDAS doctors are also at risk.

As Einstein says, "my inner and outer life are based on the labors of other men, living and dead." My son's life is based on the labors of a small group of men and women who have the tenacity and bravery to stand up to a system that denies our children proper medical care by not recognizing their "rare" diseases. This is a system that would take my son, with his crazy PANDAS and Lyme symptoms, and lock him up in a psychiatric hospital, much as they did to Elizabeth Wray.

The doctors who do treat our children have found their meaning in life. They will be long remembered. They are true medical professionals, doing all they can to save lives. And for that we are forever grateful.

I have a new meaning in life, one that I never wanted. It took us several years before we determined that our son has PANDAS and Lyme. I wouldn't wish this on anyone. If my words reach one person and save him or her the grief of misdiagnoses, then I have made a positive change to this world. Unfortunately, try as I might, I cannot, alone, save my own baby.

I need doctors. 

Henry David Thoreau said, “If a man loses pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured, or far away.” 

The doctors and scientists who will save our children are those who are creating their own music or listening to a drummer not found in the AMA, the CDC or the pharmaceutical industry. The doctors who will save our children do so at their own risk. But it is our children who are at risk if we lose these doctors. 

Note: At our recent support group meeting, we were honored to include Pamela Weintraub, an Executive Editor at Discover Magazine and author of Cure Unknown, who is researching PANDAS. Please check out her articles--one in Psychology Today grapples with the fact that moms of children with chronic diseases are sometimes being accused of Munchausen by proxy. It isn't just our doctors who need protection. In addition to being a fantastic writer who has written about her experience with Lyme Disease and the medical community, as well as other pertinant articles, Pam Weintraub turned out to be an unassuming, lovely person whom we would all like to befriend. 

CSE Meetings and Silence of the Lambs

I went in alone. 

You gotta understand--I don't "do" horror movies. Why I sat through Silence of the Lambs an eon ago--at night, albeit with my brother--is beyond me. After the movie, I drove my brother to his house, went to the ATM (looking in every direction to make sure no one lurked,) and walked next door to the supermarket.

I knew it. A man followed my footsteps. My heart thumping, I peeked into the next aisle and tiptoed down it. Hannibal was there, somewhere. But I evaded him. I paid for my goods, went to my car, checking out the parking lot. I peeked under the vehicle and into the back seat and opened the door. No one hiding. I placed my two bags in the car, sat behind the wheel, locked the door, buckled up and drove home.

Heroines who walk into unlit apartments with arms full of bags get attacked. So I left the bags in the car, unlocked the outside door (it was an old house,) unlocked my apartment door and turned on every light--outside, hallway and kitchen. I kept my keys threaded between my fingers, the way I'd learned in college.

And then the fuse blew.

#####

 On Thursday, I walked into a CSE meeting alone.

I might as well have had bags in my arms. I might as well have been bound and blindfolded. I might as well have yelled, "Ready, aim, fire!"

As it was an early morning meeting, my husband was home with the children. I was solo.

My son now receives homebound tutoring services. I am not that impressed with his work, as much of it worksheets. He can spend an hour looking up and writing definitions of words when he has dysgraphia. As an elementary school teacher, I would like to see my child learn fractions with objects (manipulatives) rather than memorizing rules the way I once learned, without understanding a thing about it. PANDAS often results in a decrease of math abilities and my son was hit with that bomb. 

The tutor had advised my husband to request that my son get credit for this year (I didn't realize that he wouldn't!) and had advised him to ask about a certified tutor (I didn't realize that HE wasn't!) But during the CSE meeting, the tutor (on speakerphone) seemed to think that my son doesn't put enough effort into his work because right after his lessons, he leaves (to sleep for the afternoon--he's used up his energy.) And frequently, he has not been able to tcomplete homework. 

Interesting that after the IVIG, he can work. Ain't that interesting? Doesn't that tell ya somethin'?

In the course of the CSE meeting, it became apparent that the tutor had never picked up any of the science work (experiments!) left by the science teacher. Three months of work! And my son would love anything that is hands-on. It's a shame that he cannot learn directly from this science teacher, but it turns out he wasn't even learning indirectly because of a lack of communication on the school's end.

We never even got to discuss his IEP. The director of special education had her own agenda. She wants to speak with our PANDAS doctor, the one who wrote the note that is keeping our son out of school. She was not going to give any services away. This meeting was all about communicating with the doctor and bringing my son back to school.

She wants my son to attend school for a short period of time every day. Does she believe that we WANT our son to be home all day long? I attempted to explain that when my son is exposed to ANY germs, he flares. So, he might attend one day and then be out for two weeks, as he was before he received the homebound tutoring.

Oh, no. She wouldn't listen. Every word I said was conradicted. Clearly, she was pissed as all get out that I wouldn't give permission to speak with our doctors. It's not legally necessary. I've given them papers about PANDAS. What more is there to understand?

So back to my son returning to school. I asked if the school would guarantee that everyone in the class would be healthy. (Of course not.) As my husband later queried (to me,) is the school system willing to cover the thousands upon thousands of dollars that have been spent on doctors, medications and IVIGs?

It became apparent that the group feels my son is not doing enough work. It became apparent that anything I said mattered nought. It became apparent that they are not going to assist him anymore than they are already doing. 

As a teacher in the public school system, I know that a director of special education is often a gatekeeper to services, with the main interest being the protection of the school system's pocket book. So the school system will never suggest alternate, available services if it means opening up their own wallet. Doesn't look like we'll get a teacher with a degree in special education to work with my son at this time. It was finally decided that they would ask the math teacher for the manipulatives (but does his tutor know how to use them?)

For some reason, the director had to argue with everything I said. I realized at some point that she was making this almost personal. And that's when I shut up and started taking notes.

When I said my son used to have many friends, but had a rough time in school last year, and his friends began slipping away, she contradicted me. She said that he was very social and that was the one strength he still had. Has she even met my child? Does she live in our house? Has she monitored our phone? 

When I finally said that I could not give permission to speak with our doctor until I had conferred with my husband, the director said she'd call me that night for our decision. I told her that I wouldn't have a moment to speak with him about this with him in one day.  She stood up and said, "My daughter's 16th birthday is today but I can make the time to call you tonight. I think you can find the time for this discussion."

Speechless. I was aghast. The smug arrogance from her swept over me. The nastiness shocked me. All I could think was that she was fortunate that her daughter doesn't have PANDAS and that her household is not fraught with the nightly triggers as is mine. That when she comes home from work, it's not about literally holding a raging child and soothing his sibling, or trying to bring down the stress level in the house. She went so far over the line. 

She earned herself a lot of nicknames on Thursday.

And this thing ain't over. 

#####

For the record, the night the lights went out after the horror film, I climbed the dark staircase to the upstairs apartment and rapped on the door. (Note: this was before cell phones.) College students from Haiti were living there and one of the young men accompanied me to the basement so that we could fix the fuse.

A week later, he laughingly told me he'd finally seen Silence of the Lambs and understood why I couldnt walk into the basement alone.  

Should've had him there with me on Thursday.

Flu Blues and Unexpected Gifts

Down for the count. That was me last week.

One morning, I couldn't even talk. My husband sang, "Hello silence, my old friend." It hurt every part of my body to giggle. Every day, I sent in new lesson plans to school and fretted about my class. Every day, I lay in bed and worried that my son was being exposed to yet more germs, and only days after recovering from the last IVIG.

And as I lay in bed all week, in between bouts of sleep, I felt my world narrowing in. Without work, it's all about family. And PANDAS. 

PANDAS, PANDAS, PANDAS. Ugh!

"Welcome to MY world," my boy would say if I ventured to complain about a flu symptom. Whoops. Does he really feel like this EVERY day? 

Ouch.

When did my world get this...boring?

When did I get this...droll and obsessed?

Yeah, I got hit with the flu blues...but while I was under its spell (and I sorta still am...this thing likes to linger,) I began feeling...gratitude. 

I have one healthy child. Whom I worry about. But she's healthy.
I have a loving, often supportive husband. Who works from home and takes care of us all. Who made me the best-tasting honey-drenched tea while I was ill. Many, many times.
I do not suffer with fatigue, migraines and body aches every day. Only when I'm under the thumb of the flu monster. But some of my fellow PANDAS and Lyme parents have PANDAS and/or Lyme themselves. Yet they don't give up. On the contrary, they're activists, or in the case of one amazing woman, going back to school for a degree in healthcare. 

So, there I was, feeling lonely and sick, when my friend called. She is a friend I've had for over twenty years, a pal who traveled to Greece with me, met guys with me, tried drinking retsina with me. A friend who joined me for movies (and tissues for Schindler's List) and for late-night dinners in the summer when temperatures hovered around 100 degrees and it was too unbearable to even microwave a meal. A friend who meets me for organic lunches and visits when my son has his IVIGs. A friend who still laughs at my stupid jokes and thinks I'm hilarious. A friend who questions all the medical information I give her and listens...to everything I say. A friend who makes me laugh.

And suddenly, I was that girl again, the one who loves to dance, who wants to pursue other dreams and adventures, who still yearns to own a horse.

And I want to return to Greece. I want to take my husband to Venice and my children to Hawaii. I want to escape the chains of medical problems and bills, of my kids having fewer friends because of this ordeal.

The doorbell rang on the last day of my confinement. "Someone with flowers," my son yelled. And sure enough, there was a delivery for me from my godmother. Get Well Flowers to remind me that I am loved.

I returned to work on Monday, still tired, still feeling like my world had finally shrunk to the point of a surgical needle. And that's when I received my last gift. I was speaking with our school guidance counselor, who suggested to me that my husband and I get outside for a five-minute walk every day. Just getting outside will help you know that the world is so much bigger, she said. And the fresh air, no matter how cold, helps.

He immediately agreed. We left the kids in the house. We left the dog, so eager to walk with us, in the house. We got out, under the vast starry sky, and walked, holding hands, breathing out in the chilled air. And the next night, we did it again.

Something so simple. 

My daughter is thrilled. She loves that we are smiling together, spending a little alone-time together. 

And this daily time-together is getting us through the next PANDAS flare (brought on by out son being exposed to the flu!)