So, You Think You Know More Than the Doctors, Huh?

A little while ago, in a PANDAS support group, I asked parents, "How did you figure out your child has PANDAS?" Was it diagnosed by your pedicatrician, another parent, you?

This was an informal "study" with about the same small number of partipants as the most recently published Lyme study. The sad fact is that about half these parents and countless others have had to figure out the diagnosis for themselves. Before finally receiving the PANDAS diagnosis, many of our children have been misdiagnosed and placed on psychiatric medications which can, in fact, exacerbate PANDAS symptoms. 

So, this brings us to the next question: at what point do parents diagnose their own child? I think back to when my son first got sick. A good friend of mine told me about PANDAS. It had to do with strep and OCD. Her son had it, with classical OCD symptoms. This did not ring any bells for me. My daughter had strep but my son hadn't for a long time. He didn't have OCD (or so I thought.) He certainly didn't have to flush the toilet fifteen hundred times or line up his pencils like an old-fashioned army when he did his homework. 

I googled PANDAS at the time, but not a lot, because I was busy researching bipolar disorder, which I suspected might be the cause of my son's issues. There were two schools of thought regarding bipolar disorder: 1. Children CAN'T get it and 2. Children CAN have it. What I saw in my child was this Jeckyll and Hyde behavior: one moment, happy, the next, irritable, the next, a complete rage or temper tantrum, followed by remorse or depression.

Our doctors said, "mood disorder" only because they couldn't figure out what was going on. The proposed new diagnosis of disruptive temper disregulation disorder, was being considered. According to my husband, the psychiatrist asked if Lyme Disease could be an issue, but the tests for Lyme Disease that many pediatricians in NY offer are inadequate. One band showed up, but the diagnosis was discarded. My son did not have Lyme Disease according to CDC guidelines. And we parents did not yet know better. 

Just this past week, in one of the online PANDAS support groups, I read about pediatricians telling parents that they don't believe in PANDAS. I read about another pedicatrician refusing to work with a parent after the parent consulted with a PANDAS expert. And I'm constantly reminding myself about Boston Children's Hospital, whose claims of "Until Every Child is Well," discriminates against children with PANDAS (and Lyme.) BCH has told many parents that they neither believe in nor treat PANDAS. Many stories of parents denied treatment for PANDAS from BCH show up on these private support groups. 

If one of our "greatest" institutions don't recognize PANDAS, how are we to deal with family members who question the diagnosis? As for me, when I realized that my son's intrusive thoughts (of walking in front of a moving vehicle) were a form of OCD and once I realized that his crazy impulses to stick his fingers into a bowl of cole slaw were ADHD-like, I began exploring PANDAS further. I was able to locate some nearby parents and hear their stories. As my son's angst built over the remainder of the summer, as separation anxiety came into play, I made appointments with some of the PANDAS experts to whom I'd been refered.

"You think you know more than the doctors?" I was asked by family who heard what I was doing (friends thought it, I'm sure, but kept silent.) "What makes you think you can diagnose your son?"

Well, yes, I do. I know my child better than anybody else on this planet. Since he became sick, I have read, researched and spoken, either in person, telephone or over computer, with hundreds of parents in similar situations.

Finding fellow PANDAS and Lyme parents has been a blessing for me. I have learned more from these parents than I have from any book or doctor. Collectively, these parents have experienced everything--from children trashing TV sets in the midst of a rage, to children prefering strange, adult foods to regular, kid-foods, to kids urinating on floors, to kids being zapped by police, to homeschooling or homebound instruction. To psychiatric hospitals and jails. All for a medical condition.

So, yeah. I know more than the doctors, sometimes. And knowing more has led me to find better medical care for my child. No doctor knows everything. No PANDAS or Lyme Literate doctor, no matter how well-read or scientific, has all the answers. Some of the experts have differing opinions; it is both the option and the duty of the parent to try to figure out what is best for the child.

The one thing that neither the doctors nor I know is whether we can permanently halt the autoimmune part of PANDAS, and whether the Lyme spirochetes having a party in my child's body will ever be eradicated. But one thing I know for sure: this time in our lives is part of history. We may at the the forefront of learning more about PANDAS and Lyme, we may be some of the first parents to actively pursue medical treatment (as a disorganized, yet unified group,) but each day we do so, we are writing history.

Note: 16 year-old Elizabeth Wray remains at Boston Children's Hospital and her famiy remains under a gag order. The Wrays took their daughter to BCH for OCD-induced anorexia (which my own son has suffered from,) after working with two different doctors who diagnosed PANDAS and Lyme (both of which my son has.) They went to the "best" hospital only to be told that BCH doesn't believe their child has PANDAS and that the hospital doesn't believe in PANDAS. When they tried to get their child transferred to Mass General, another Harvard affiliate and the one hospital in the area that DOES treat PANDAS, BCH called CPS and had custody of Elizabeth removed. BCH then took her off antibiotics and the gluten-free, dairy-free diet that was helping. When I met her grandfather, I heard that she was no longer walking, and that the head nurse would let her soil her sheets rather than bring her to the bathroom. Her parents were caring for her 24 hours a day and trying to prevent her from succumbing to the PANDAS. The hospital was also taking her food away because she was eating too slowly; they were fine with her drinking Ensure. 

Yeah, we know more than some of these doctors. Don't you agree?

Creating the Bubble

Good evening, Ladies and Germs,

I am here to tell you that some mighty transformations are coming our way.

A few weeks ago, I barely had time to consider our next steps as our little guy was raging from the moment I'd get home from teaching. My 40 minute lunch period was consumed with calling his doctors and school. My evenings were tied up with me striving to attend to my little daughter while struggling to calm an upset boy who needed holding in order to contain the constant rage. Scream city. Had some unsuspecting neighbor wandered too close to our house, they may have been tempted to call outside authorities, based on the volume of piercing screams emanating from every single room. 

We could NOT go on like this anymore. What's the definition of craziness? Doing the same thing over and over again even when you get disastrous results? Something was either going to break or change.

Our 11 year old middle-schooler was NO LONGER going to school. We have been in our own fiscal crises, brought on because the parent who runs his own business from the house has been caring for the child who is home with Lyme and PANDAS. And the middle-schooler's rages were getting worse and worse, especially on the days that he'd been to school. At least he was storing up the rage for home, so school had no idea what was going on. But it was only a matter of time before he lost it in school as well. This wasn't a Lyme herx anymore. This was PANDAS at its worst.

Many kids with PANDAS and Lyme are homebound or homeschooled. We fought that because (A) both my husband and I have to work and we have no family around who can care for our boy; (B) my son is a social, athletic creature and loves to be with his friends; (C) his school is pretty good--what a shame to take him out; (D) what's he going to do at home all day after the tutor leaves?; and (E) it's pretty darned complicated to keep a kid home when he sometimes has suidical thoughts and can't stay by himself.

But he's failing. Faiing to get himself into school, failing to complete any work, failing to break through that cursed brain fog that's caused by too many happy spirochetes having a drunk fest in his brain. Spring vacay for spirochetes--yahoo!

Sunny days for spirochestes are NOT. Going. To. Continue.

I had been in touch with Dr. Jones and Dr. Bouboulis. The day after the snowstorm, I went to see Sandy Berenbaum, a Lyme Literate social worker who has written extensively on children, teens and Lyme Disease. I had consulted with her twice this summer and found her extremely knowledgeable. Not even ten minutes into the hour, she said, "Homebound tutoring."

Relief. I had the validation, the confirmation I needed. Sandy gave me many reasons to help me rationalize this--not that I needed them for myself, but to help me organize our ideas and arguments. The most important one is the autoimmune disease. My son keeps going back to school and getting exposed. Who knows how many kids are walking around with strep, flu, viruses, or are strep carriers--etc. Sandy also suggested that the tutor come to our house and to not make plans to meet in the public library (germs!) 

Our next step was to find babysitters. I emailed a few people and within a couple of weeks, we actually found someone. A good someone! And two of our neighbors said we can call on them if we need someone in a hurry. It was easier than I'd thought.

During this time, I spoke with the principal at my son's school who was questioning his absences and wanted to be sure that we were all "on the same page." I told her that the page keeps turning and that we think it's in his best interests to be tutored at home where he won't constantly be exposed to new germs that keep him from attending school the rest of the week. I held my breath but she seemed supportive. I sent in a letter to the Committee of Special Education as well, just in case.

Then, we brought out little guy back for his fourth IVIG. The results of all this: mood is better, a little less OCD and tic-ing, and a better appetite (after losing 14 pounds this year--how to strike fear into the hearts of parents.) All small steps, but one hour of happiness at home is one hour of relief for all of us.

We are now waiting to hear from the school about the tutor. We hope that the teacher assigned to work with our son will be creative. It won't be easy to meet the needs of our little guy who is struggling with processing, attention and memory.

This is a kid who studied his Egyptology book to the point where he could locate Osiris and all the other ancient Egyptian gods at the Metropolitan Museum of Art yesterday (me: proud Mama.) Of course, he had to stop walking around because of joint pain. And then we had to leave because the air pressure in the museum was bothering him. But we made it through a lot of the Egyptian exhibit (while I worried about being in contact with other people and GERMS.)

Throughout all this, it ocurred to me that the place we were in was like one giant birth canal. I don't know if we are the metaphoric babies passing through this canal or the metaphoric mother pushing the twenty-pound turkey...but a voice in me told myself that things will be better once we get through this hurdle. 

How can it NOT be a tiny bit better? We're eliminating stress (PANDAS trigger) and creating a bubble to keep him safe from all the germs swimming around his middle school.

We're finally in that place wherein we recognize that our son's diseases are not going to hop out of their lounge chairs, rev up their bikes and scooter away. No, sir. They're far too comfortable hanging out in the tropical beaches of his brain and joints. 

Not for long, suckers! We've got double antibiotics going now--Augmentin for the strep and Minocycline for the Lyme. We are back to the originally prescribed levels and yes, the little guy is herxing but it's not so neurological this time. We are Lyme-fighters. Spirochete busters. The Men in Black ridding our world of unwelcome aliens. Who you gonna call?

The entire village. Plus Dr. Jones, Dr. Bouboulis, Dr. Trifiletti, Dr. Bransfield, Dr. Leventhal, Dr. Corsaro, and soon, Dr. O'Hara. Phew. That's a lot of paychecks we're supporting!

Funny how trying to create a bubble around our little guy takes so many people. Kind of like, back in grade school, when we'd raise the colorful parachute up into the air and then all jump under. We're not alone.

So, this is the gameplan now. Tutor, babysitter, neighbors who can pitch in, playdates with neighboring kids that can be conducted outside. And occasional hazardous visits to NYC or beyond. And when the babysitter and tutor aren't there, "Daddy University"--an assignment given by Dear Old Dad. Research Sweden. Watch the History Channel movie that Mommy brought home from the library. Read Wonder.

Now, is there anyone in the house that can help me rid myself of this darned cold before it affects the little boy with the autoimmune disorder who creeps into bed with me every morning?

My First Thanksgiving Blog Evah

Never kept a personal blog before. Never had a website until this summer. So, every time I write, it's a first. And this is the first time I'm making a public list of things for which I am grateful. It's that time of year.

Well, actually, it's kinda good to do this every day. Just make a mental or written list of 10 things for which you're grateful. Helps to balance out the negative. Do I follow this advice? Well, I have, at times. But lately, not as much. So, here goes. In reverse order. Not that one thing is necessarily more important than the next, but let's go for it anyway.

10) Life. Hey, every day we're alive is every day that we're hanging out here on planet Earth. I'm not in Israel right now, hiding out in a bomb shelter. Boy, that would majorly stress out a PANDAS kid. I'm in a house, with heat and hot water, electricity, on a sunny day with the sounds of kids's voices (one of my own included) outside. I might not like the number of my age, but I don't look that number yet, thanks go Grandma Stella's genes. And not only the good die young. Bad die young. Good can live to be 100. 

9) Song. I carry a song in my heart. Sometimes, it's "Killing Me Softly with His Song." (Roberta Flack.) My boy. And sometimes it's "We will Rock You," (Queen) which my daughter drummed to last night in a drummer's show. My guitar sits in the corner of my room, ready to come into school with me this week. I always have a tune in my mind. It travels with me.

8) Patience. Granted, I struggle with this but as I get older, I find I have more. When my son first got sick, I promised him that we'd get him better. Never did I think that three years later, we'd still be trying to fulfill that promise. I no longer believe that we can fix him in a day, a week, a month. Likewise, I feel that I have more patience for my own kids and the kids I teach. Usually. And G-d grant me more patience for the parents who have healthy children who complain about inane things like a faucet dripping or a kid scraping a knee. You have no idea. And may you remain ignorant as to the pain that PANS parents and children undergo.

7) Creativity. I'm not thrilled that I haven't really touched my writing lately, that I'm not ready to publish that book I've been working on (and off and on and off) for years now. That I don't play guitar or sing like I used to. BUT, my creativity does come out in the classroom. My best lessons are spur of the moment, when ideas just fly into my head, and I tuck the pre-planned lesson away and just go with the whims and curiosity of the class. It's magic in the classroom. 

6) Friendship. I'm so fortunate to have some of the most fantastic friends in the world. A godmother who always comes to visit during my son's IVIGs, gets mad if I try to pay for anything and gives the best hugs. A friend who asks ME to forgive HER for not visiting us this time because she's involved in setting up her apartment and calling FEMA after her house was ruined in the hurricane. And I wish I could be there more for her. Friends who call suddenly and take my daughter our for a fun afternoon. Friends who have my son over to play. Friends who find a way to help my husband and me go out to dinner. Friends on Facebook whom I've never met in person but who live parallel lives--these people have become my mentors, my cheerleaders, my sisters. PANDARANTS--you know who you are. 

5) Knowledge. Last August, I knew nothing about PANDAS except that I thought that my son might have it, based on my realizing that he had ADHD symptoms, OCD (when I learned that not everyone with OCD has perfectly kept bedrooms,) and of course, his tics. I remember meeting with a couple of parents and hearing about IVIGs, activated charcoal and die-off. I was like, "WHAT????"

Now I can talk circles around those topics and more, yet there is ever-so-much-more to learn. I never knew a thing about Lyme, and when my son was diagnosed with Lyme as well, I went into shock over the amount of information and then over the fact that infectious disease doctors often don't recognize chronic Lyme. I have since learned about friends who have Lyme that has never quite gone away. And through keeping a FB site and reposting information onto my private wall, I have heard from other friends about their own challenges.

4) Empowerment. I am not a victim. Yes, my son has these horrible medical diseases. Yes, it puts strain on our finances and marriage. Yes, it negatively affects my younger child. But I am stronger than ever before. I know more people than I did one year ago. I have found top-notch, intelligent doctors who question the "system." I read constantly to learn more, as most parents of children who have been diagnosed with PANDAS tend to do. I take strength from my work (teaching 5th grade.) I don't worry about a messy house anymore. I am more than that. I know that I'm doing everything possible for my family. 

3) Escape. We're struggling financially now, as my husband, who started his own business around the time our son got sick, has spent a lot of time caring for him. So we don't go on vacations. We don't go out to dinner (not that we can leave our kids at night, when the witching hour lasts for four hours.) I don't spend much time or money doing retail therapy. I'm not really into television (see #1 though.) For me, it's books. I love reading. I always have to have a book. I can travel to another land, another time, another body, another life. And the story can end happily ever after. Shades of escapism.

2) Love. Doggy doo. My moppy Kato, who has to jump into my lap (all 40 pounds of him) when I come downstairs in the morning, who would slobber all over my face if I let him. My cuddly boy who has to ask me every night, "Mommy, do you like me? Do you love me?" My daughter who thinks I'm awesome (age 9 is great!) My husband who, with my daughter, made a humungous three-layer chocolate mouse cake with chocolate ganache for Mother's Day this year. My inlaws, who have not always understood what we're going through but have tried to be there for us anyway (and have succeeded.) My dad and his wife, who follow our lives from long distance and then help out when they come back our way. 

1) Humor. Laughter. Watching Big Bang Theory with my husband. Or 2 1/2 Men (we finally got around to watching our first episode a few weeks ago.) Sharing a chuckle. Laughing at fart jokes the kids are making. In all honesty, my husband is often the one who starts it.  Lately, they came up with some comparison between farts and football positions (i.e. tight end.) Don't ask--I'm the one doing the eye-rolling usually. But inside, I still think it's funny. Kinda. Hey, I can just return to my book when it gets to be too much.

Thank you to all the people who have supported us in any form this year--from making a donation to the PANDAS Resource Center in our name, to giving support or info on a PANDAS or Lyme site, to physically being there for us, to listening to me rant or cry. Those who helped us find laughter again. Those who bought t-shirts. Those who read my postings! Those who have their own struggles yet make time and room for someone else. Hugs!

On Educators and Doctors: Evaluations

As a parent and a teacher, I am less than thrilled about the reforms in education. We are now testing our children multiple times throughout the school year and using these test results as a way of evaluating the worth of a teacher. If students do not test better each year, the teacher will appear to be ineffective. So, teachers of the "gifted" are not going to appear to be very effective, as their students are not going to show much improvement.

On the other hand, children like my son, who is struggling with memory and processing issues from Lyme Disease and PANDAS, are every teacher's nightmare. He once did much better on these standardized tests, but as each year goes by, his score plummets. No, my son ain't gonna make no teacher look good. And no teacher is gonna be thrilled to teach a kid like him (except for his easy smile and great personality--but no--these also seem to be plummeting with this new PANDAS exacerbation.)

What's happening is that many schools are teaching students how to take these tests instead of teaching about the real world. So, instead of studying rocks and minerals in class, they might read passages and answer questions for months on end. That's not the kind of teacher I want for my kids. And it's not the kind of teacher I can be. 

My 5th grade students can debate the merits of the electoral college. They can quote Shakespeare and give a speech. But if they struggle with math, and no matter how much I work with them, they bomb the end-of-the-year test, I'm going to look like an ineffective teacher.

My son now struggles with math and bombs the end-of-the-year test. Yeah. Guess his teachers are ineffective. No matter how good they actually are.

Years ago, a superintendent once said, "If a child is starving, you don't keep putting him on a scale. You feed him. So instead of constantly testing these kids, teach them."

What if a kid has a disease and isn't getting better? Do we keep tossing drugs at him? Do we throw him into a psychiatric hospital when the disease starts to affect his neurological system (or when the longevity of it results in depression?) 

How accountable are doctors? For two years, my son was incorrectly diagnosed. This is typical for kids with PANDAS. And way too typical for kids and adults with chronic Lyme Disease. If the CDC doesn't yet recognize chronic Lyme Disease, are doctors still responsible for treating this? Where do ethics come in?

Part of the problem is that the current tests for Lyme are inaccurate. They often result in false negatives, as they did for my son. Igenex is supposed to be one of the stronger tests, and there are others as well, but none of the doctors we saw in NY used these.

The doctors who ultimately found the PANDAS and Lyme in my son are out-of-the-box thinkers (and also out-of-state.) These are the doctors, who, if they were 5th grade teachers, would be performing educational plays with their classes instead of spending months prepping for state tests. But this is what is shameful--it is these doctors who are being penalized. Some of doctors in our country who treat patients suffering from PANDAS and Lyme are being investigated by departments of health and harassed by competing doctors who don't subscribe to the treatments to this diseases (sometimes for undisclosed financial gain.) 

Which doctor is considered highly effective--the one who observes every rule set out by the CDC or the one who treats the patient despite rules that are outdated? If a doctor says he doesn't believe in PANDAS, although there are hundreds of articles about it and a multitude of reseach studying it, do we get to complain to the principal or superintendent (and get that doctor fired?)

And that leads to the next question--why is it that NO hospital in this entire country can treat chronic Lyme? Is there NOWHERE for me to bring my son if we need a hospital? If the Lyme affects his brain, and I bring him to a hospital, they'll want to toss him into a psychiatric ward, much as Boston Children's Hospital wanted to do to sixteen-year old Elizabeth Wray. 

Totally ineffective, that BCH, when it comes to PANDAS and Lyme.

I'm totally pro-doctors. I think doctors should be paid enough to make their many years of sacrifices and education worth their while. Mass General is installing a PANDAS clinic. They have my utmost respect. Westchester Medical Center? They won't recognize chronic Lyme. When we brought my son to the ER there, they didn't even test for Lyme. They assumed he had a psychiatric condition. And you know what they say about assuming.

Not recognizing that chronic Lyme exists is like saying that children don't have any learning issues. It's like stating that children are lazy and if they can't sit still, they need a good smack. It's about time we get our medical community up to standards--the patient's standards--and that starts from the top. And when it comes to evaluations? We need to look at the big picture. And the tests that currently exist don't measure this. In education or in the world of PANDAS and Lyme.

(Coming up--from Molecula Labs-- PANDAS test created by Dr. M. Cunningham.)

XBox and Integrative Medicine

My son is sad--truly distraught--because we don't own an XBox Live.

"You don't understand, Mom. A Wii is boring. I NEED an XBox. I want one so badly. Everyone else has one. And it has to be LIVE so I can play with my friends. You don't understand. I think about this ALL the time!"

Tears. Oh, they melt my heart. But not enought to buy him an XBox. Sorry, XBox Live.

Normal kid stuff? Shake in a whole lotta OCD. Add a couple of tics. It's the PANS-kid cocktail. And once it becomes an intrusive thought, we're way past the my-kid-wants-a-new-toy-thing.

When he first got sick, THREE YEARS AGO, it was all about owning an iPod. "I HAVE to have it. It will make everything better." My husband gave in and let him use his old one. Voila! For five days, having this iPod DID make everything better.

And then, it didn't. 

Back to reality. "Well, if you save up your Chanukah money," I tell him, "and add it to your birthday money, you'll be able to buy one in a few months."

Nah-ah. Instant gratification is desired. And killing aliens on the computer is fun.

I can't blame him. Part of his life absolutely stinks. Why not go for fun? If he's not playing with friends, he is miserable. Fatigued, depressed, with joint pain and oncoming rages that he's trying to suppress. We are LUCKY that he can sustain friendships and lose himself in play.

But for how much longer? At home, that control is starting to slip, as he begins to use his weight and strength. He's not getting any younger. Puberty awaits.

I am very much aware that antibiotics alone are not saving my son. I have a zillion questions to ask at the next doctor appointment. I'm grasping, thinking, planning. What can I possibly do? I cannot believe that we will be unable to heal my son, unable to climb out of this PANS pit.

OK. I admit it. I'm desperate.

What has worked? IVIGs perhaps, for a period of time. But only until the next virus comes along. Or the next herx from treating the Lyme. Will he need IVIGs for the rest of his life? Plasma infusions come with their own risks.

A few days ago, I spoke with a VKP (Very Knowledgeable Parent) who has been attending conferences whereby she is learning that we need to heal the gut as well as the brain. The gut is crucial to our health--in fact, it has over a hundred million neurons and is referred to as "the second brain." Very cool! 

Of course, I give my son probiotics. Also, I have the GAPS book but haven't attemped even to crack it open (after my failed exploration into the world of gluten-free this summer.) I have read the summary of the diet, though. So, I bought kefir--which he won't drink--and I just bought saurkraut. My husband and I like kimchi. I made beef broth. But there is no way that I can get my son to stop eating carbs, and white bread and rice at that.

This is my plot: introduce a little "healthy" food at a time. Or make saurkraut/kefir smoothies and force them down his throat. Joke! Really!

I honestly tried to get the Halloween candy out of the house. "Hey, you two," I said to my kids. "I'll give you $10 each for most of your Halloween candy! You get to keep 5 or even 10 pieces. What do you say? I want to donate it."

"Really, Mom?" sneered my son. "$10? No way. I worked hard for this candy. We went all over the neighborhood."

"Yeah, Mom," added my daughter. "I live for this candy!"

OK. So, I'll just have to EAT the candy myself. Ugh. And I'm not even bike-riding lately.

Not that my little guy will even eat a lot of it. He's incredibly picky with his food now. I can't get much into him. Egg whites, creamy, but he won't touch the yolk. Oh, and he's suddenly into cole slaw. He will eat turkey legs, duck and lamb. No fruit or vegetables. Unless the broccoli is in Chinese food from the Chinese restaurant. He likes pizza if it's from a restaurant. 

He liked my roasted pumpkin seeds today--yay! And they're good for him, too! Double yay!

So, our next step, I have decided, is to see a doctor who can look at the entire picture, a doctor who can communicate with our current team of professionals, a doctor who will have alternative ideas, a doctor who can leap tall buildings in a single bound. Yes, she exists! For she is an integrative doctor.

Oh, and a lot of integrative doctors don't take insurance. Maybe I need to hold onto that $20 I would have spent on their Halloween candy.  I'm gonna need it.