Prepping the Pills, Brain on Fire and Other "Fun" Stuff

Like Monday, Tuesday, Wednesday underwear, we have daily pill boxes, all divided into morning, noon, evening and bedtime. And yes, these do make my life easier, since I have to drop between 4-6 pills (including 2 different antibiotics) and supplements into each morning and evening time slot. 

Probiotics are a different matter, since they have to be refrigerated. The noon slot, therefore, is deceptively empty.

The Valtrex pills are covered with blue varnish and need to be washed. OMG. It's like a fingerpainting nightmare--the blue running off the 14 whale-sized pills, dripping into the white sink, onto my fingers, staining the paper towel.

The Enhansa leaves a slight orange residue from the turmeric.

And I just remembered that I forgot the allergy medicine and have to go back downstairs and open up each and every box to drop in yet one more pill.

But, oh how I love the click click click when I close each little window into the world of pills.

I should have every pill he takes written down. I have had everything written down in the past, but it changes so frequently that I haven't kept up. I keep every pill that my son must have in my...mind.

Ouch. If I ever get sick, if I ever get amnesia, if I ever lose my mind (cut out the jokes!) we're in trouble.

But then again, if ever something were to happen to me--or my husband--not to sound too narcissistic, it would be devastating to my children. 

Who would take care of my sick child? It would be easy enough to find someone to love and cherish my healthy child, although she and I are super-close and she would need/miss me beyond anything.

But really, who would take care of a child with PANDAS? One who wants to be bar Mitzvahed next year (but hasn't started studying yet,) one who dreams of being a marine biologist in Hawaii, but cannot read a book right now, one who has a wonderful singing voice, but has lost his passion for singing. A child who, at times, is downright psychotic, due to this crazy-making autoimmune disease. A child who needs a lot of holding, even in his sleep.

I just finished reading Brain on Fire: My Month of Madness by Susannah Cahalan. 

I took the book out of the library. Twice.

The first time, it sat there by my bed, meditating. Considering me. Was I worthy enough to open the pages of the book? It sighed in discontent. And then was stuffed into a bag with a bunch of other books and CDs and thrown back into the library return slot.

I coudn't bare to read it. Too much sadness between those pages.

But I tried again and the book opened up to me, pouring out its story of...hope and survival. And scientific discoveries and heroic doctors who beat the odds. From a writer with a magnificent sense of word-style and irony.

Although Ms. Cahalan's autoimmune disease was different, although her symptoms were not the same, there were so many similarities between her experience and that of our son, that I had to read every page, every word. Reading this story gives insight into the minds of our little guys and girls who cannot yet articulate their experiences. Reading this story is like staring through the window into a hospital room, being an invisible eavesdropper. 

I searched the internet for pictures of Susannah Cahalan. What I really wanted to also see were pictures of her parents, those patient heroes who scooped her up and brought her home, literally and figuratively. What I really want is to meet her parents and talk with them.

Her boyfriend is, without doubt, a find. But her parents interested me because as I read her book, they did everything that my son's dad and I would have done. No matter that she was 24, then 25. They helped to save her, despite their shock and grief. I cried for them as well.

As a mother of an almost-12 year old, I don't have to worry about him drinking. I have total control over whether he takes his meds--almost--my husband and I will take away his prized possessions if he doesn't. Our son convinced us that he should be given a reward for taking all those distasteful medications (Mepron, PharaNAC,) all those pills several times a day, all those needles, from IVIG to tubes of blood drawn from him. He was right. We got him the Google Chrome, a small, relatively inexpensive laptop. He can now google, write, get on Facebook, play games. And we can now hold it over him when he complains about the meds (sorry, little guy. Daddy and I do what we must do.)

Meanwhile, I worry if these medicines are helping or hurting him. We are finally working with doctors who specialize in PANDAS and Lyme and I trust them...more. But there are no sure-fire cures for these diseases yet. It's all trial-and-error. 

Poor kid. It's only a matter of time before he rebels more and we need to fix him before he does. Right now, he is so responsible that he won't go to any websites that are inappropriate. When he and his friend watch PG-13 movies, he fast forwards through even kissing scenes. This is no nerdy boy, either--he's an athletic, handsome, young boy who is not yet ready for adolescence. 

But it's coming 'round the mountain. 

And those pill boxes sit there like a proud little choo choo train.

I think I can I think I can I think I can.

Homeward Bound

Just sitting in the doctor's office
laptop propped up on my lap
son is in the IV chair
getting his immunoglobin share

bags are lying on the ground
with food and books and coats from home
while TVs play and children cry
I cannot even see the sky

Is the air still fresh outside this place?
Does it really matter anyway?

Homeward bound...I wish I was
Home...when my child is better
Home...where there are no needles
Home...when G-d has given

my baby back to me 

On a tour of doctor's rooms
where blood is sucked out from his arms
and PANDAS juice* is pumped back in
and letters to the school are done
and why cannot he have some fun

Homeward bound...I wish I was

Home...when my child is healthy
Home...when there is no PANDAS
Home...when G-d has given

my baby back to me....

*PANDAS Juice or plasma, as coined by my husband today, while he sat with our son during the IVIG.

And the results are in...for today, my baby is doing well. One day at a time.

With thanks to Paul Simon, whose song has been rambling around in my mind.

Got Stress? Let's Clean!

My son: "Mommy, if Daddy were married to a man, I'd be able to have a lizard for a pet." 
Oh, the stereotypes.
Me: "Only if his husband was ok with reptiles."
I am so not.

He wants something to make him feel good, something that will sit in the corner of his heart (his words) and something that will kinda be like a reward for all his efforts at getting better.

My little guy is flaring--big time. Doesn't see the point of living if living means needles and needles and pills upon pills and no recovery. Can't say I blame him. But two weeks ago, he was doing ok, and he will be ok once again. I just can't say when.

I spoke with one of our doctors today and will meet with her tomorrow. We see Dr. Jones for a follow-up next week and "we" are scheduled for IVIG the week after. Lots of medical time. Lots of medical bills.

And therein is the point of more stress now. 1. Major flare. 2. Money. and 3. IVIG controversy.

A problem has cropped up over the type of plasma being used for the IVIG. The doctor who offers this service has changed from using Gammagard to Octagam. Many PANDAS parents are expressing major upset over the quality of it. I need to further pursue this. The entire procedure is experimental enough. Do we dare try a different and once-recalled product? (Note: it was a voluntary recall.)

Then, there's my little guy who has become another person. There are tantrums, urges to run-away or to immediately and permanently relocate to Florida, nightmares and sleepwalking. I won't go into the details, but it's misery x 1,000,000.

We are not isolated, though.

Friday morning, I emailed my daughter's teacher and school social worker, both caring and trustworthy people. I know my daughter is in a good place when she is at school.

Saturday, I took a long, sweat-inducing walk with a great friend and my trusty dog. Finished reading yet another book. And felt the love from my online PANDAS parents support "family."

Today, I cleaned my kitchen floor until it's shining bright like a diamond. And one extraordinary teacher/friend offered to come visit with my son a couple of times and teach him whatever he would like to learn (and give us a little respite.) 

When I was in my very early 30s, I took a trip to Italy alone. For ten days. Every day, I met someone new--another American woman, a family who "adopted" me for the day, a group of people from Kenya with whom I saw a concert in Venice, a handsome Italian man who courteously walked me to my next location in the evening. And it occurred to me, although I'm not really religious, that there was some positive thread, that somehow, if I looked, I'd find that something was looking after me. I wasn't alone.

And it's that way now. I've had emails and phone calls, and prayers. We will get through this. I know it.

So, here's the weird thing. When I'm stressed, really stressed, my body asks me for chocolate. And usually, I say, "No!" Because if I said, "yes," I'd weight 400 pounds.

But when I'm in super-stressed mode, my body doesn't want to eat. Ahhh. Isn't that the kicker? Why can't I always feel like food is just a necessity?

And, to top if off, I want to clean. Not your house, sorry. But I want to scrub my kitchen down. I want to try to get those old, perhaps 90-year old kitchen tiles to gleam like the teeth of a freshly dentist-ed 90 year old man.

Just call me Cinderella. Hungry and scrubbing.

My Prince Charming is out grocery shopping now. And not for chocolate. In fact, my Prince is a little apprehensive about the dietary changes we will have to make after this meeting tomorrow (very possibly dairy-free and gluten-free and peanut-free. Basically my little's guy's staples.)

Yeah, I'm taking off yet another afternoon from work, while worrying about paying for the $100s of dollars of supplements that are not covered by insurance. The little guy is quiet right now, but that's not necessarily good news. My daughter is relaxing her soccer-muscles in a bath and singing happily to herself that she's got the moves like Jagger.

Life, for this moment, is OK.

And when the stress hits again? Well, the stovetop is looking a little grubby.

The Kid is Lazy...and Other Myths

He gets a headache when he reads more than five pages. He hates doing his homework. Talk to him about doing schoolwork and he's suddenly full of angst. Is he lazy?

She throws a temper tantrum when you coax her to complete at least two math problems. And finally, you give up. You'll try again tomorrow morning. Is she calculating?

He's fine all day, with the grandparents, even with his dad. But when mom comes home, suddenly, he's angry and depressed, with his body aching. "He wasn't like this until you came home," the mom is told. "He's a smart kid and knows how to manipulate you," the parents hear from the professionals.

She refuses to sit anywhere but at the head of the table. Refuses to use the new silverware. She argues with her sister about it. Is she rigid?

"I have to have this new toy," he says. "I have to, I have to! I can't even tell you why. I can't eat or drink until I do!" Is he spoiled?

Today, in our American world (at least in upscale neighborhoods in the Northeast,) our children are considered quite entitled. They chatter away at school when the teacher wants them to quiet down. They even draw up petitions for the principal to request a new and improved playground. They travel to exotic locales on their holidays. Not all the kids. Many stay home. And then there are those kids who spend the holidays visiting doctors or running around in the neighborhood, trying to avoid venturing into the yard of that old, mean neighbor. They brag about their Christmas and Hanukkah presents. They plan their next playdates. They question their parents and other authority.

So, are we teaching our kids to be lazy, stubborn, spoiled and manipulative? Are we teaching them to be disrespectful? 

Sloth
As a teacher for something like sixteen years now, I don't believe that kids are lazy. And I'll tell any parent that. Children want to please. They want to learn.

When it comes to homework, there are many issues.

#1, it's too hard.
#2, it's too easy.
#3, it's just NOT interesting (as is often the case--and I don't blame the teachers--we often HAVE to give a certain amount of homework, as well as prepare our students for those tests that the government is spending millions of dollars on that will "measure" how well we teach. Having said that, I try to give interesting homework, or projects, but I'm not perfect. Plus, what I deem interesting might be boring to someone else.)
#4, your child is just brain-drained after a full day at school.
#5, your child needs to run around and exercise after sitting on her butt most of the day and containing all her energy.
#6, your child is upset--an argument with friends, a family issue, a pimple on her face, a party she wasn't invited to, a "tiny" bullying incident he doesn't want to share. 
#7, your child might have a learning disability or a processing issue of some kind that makes it difficult to learn.

PANDAS and Lyme both introduce processing issues that may have not previously existed. When it comes to math, many children with PANDAS suddenly have difficulty. Short-term memory and processing issues make calculating difficult (although your child might still be very calculating in other ways.) Math facts might be lost, only to be re-learned when your child is no longer in a flare. Some children have expressive language challenges and might need a wordbank in order to access vocabulary. Low frustration levels, especially at night (the witching hour) abound. We need to select the best times to work with our children. And offer rewards, not punishments. 

Inflexibility
I find that my PANDAS child has always had some difficulty with transitions. He's not autisic or anywhere on the spectrum. When he was two years old, I'd bundle a protesting little boy into his snowsuit and carry him outside to toss snow around. Once out, he was the happiest little boy and didn't want to come in. We learned, as many parents do, to give a "heads-up" when switching from one activity to another.

But having to sit in one seat at the table is another form of rigidity and this is a symptom of OCD, which in this case, is caused by PANDAS. We've gotta pick our battles and since we have a ton of them, my little guy can sit where he needs to sit. End of story. For now. But when my husband started saying he would only sit in one chair, I started to get a little wary. "What?" And then he expained and it had nothing to do with OCD. Phew!

Spoiled Brat
Oh, no, he's not spoiled. He just had to--HAD TO!--have this one particular toy. One parent lets her son go on eBay and bid for low-priced items when he gets like this. A teenager who's been through this says not to give in too often, because the urges will grow stronger. My son's brain was acting up. I've seen it before, wherein he believed that if he only had a certain item, he would be better. No, child, buying you an iTouch will not cure your PANDAS. Or Lyme. I think this is where cognitive behavior therapy and exposure therapy would help. But when you, the parent, do give in, don't wallow in a guilt trip. We're all doing our best. Children who are medically sick are needy in so many ways. 

Something else we find ourselves doing is allowing our child to sleep in our bed or in our bedroom at night. Separation anxiety, nightmares, migraines, sleeplessness--they make for a bad night. Many of the children suffering from PANDAS can't sleep on their own anymore (even if once, they were able to.) And I find that the "well" sibling who holds herself together marvelously during the day, also does the midnight musical bed routine. Sleeping bags are the way to go.

Privacy? What's that?

Manipulation
The glass is half empty or its half full. For years, I thought that my boy had so much strength inside that he was able to hold it together in front of the rest of the world and contain all his upset for...well, me. Because home and parents are safe. The first set of doctors cast doubt on this and we reprimanded our son for his behaviors. I felt like I was the only one who truly believed that all the Taekwondo he'd done, all the parenting we'd done, and the good-natured, social person he was had given him perseverence. And then he cut his fingers in school with scissors. 

All people manipulate to some extent. We all try to control our environment, and that's not a bad thing, but a survival behavior. But to accuse our children who are battling an illness of being manipulative? That's too much. Would we take it kindly if a child with brain cancer is accused of being manipulative? PANDAS is so much harder for people to understand. If our children had chemotherapy and lost their hair (G-d forbid,) people would feel more empathy. But PANDAS, because of its tics and OCD, is too closely related to diseases that still carry stigma. What I'd give to manipulate the media that exploits mental disease! (Think Charlie Sheen.)

Insolence
OK. I admit it. My child with PANDAS has cursed at me, at the world, at my husband, at his little sister, at that cute dog in the PANDA hat at the top of this page. My healthy daughter has talked back to us in a way that I would never have done. My mother threatened to wash my mouth out with soap when I came back from camp one summer. I'd learned horseback riding and the F word. And when I was a teenager, I got slapped in the face (and I swear, I wasn't even rude.) 

We don't wash their mouths out with soap (although we've threatened.) I don't slap my kids' butts, much less their faces. As for my son, when he's like this, he's raging and in a bad way and needs to be held. He cannot help himself and the part of him that is vying for control will beg for help. He hasn't been healthy enough in the last three years to have a normal defiance.

As for my daughter, she was always confident and questioning (until her brother's illness) and we love this about her. We don't let her get away with disrespectful behaviors to us. And she knows better than to speak this way to her teachers or other adults. But I'd love to have her as my attorney or even my spokesperson someday if that's what she chooses to do. She's an incredible person already.

I like the fact that our children have learned to question authority, albeit in a respectful way. Our political leaders do not always make the right decisions for our collective futures. We can never again allow a Holocaust to occur. The Milgram experiment at Yale University in 1961 proved that we cannot blindly obey authority. We must always question and we must teach our children that it is integral that they do so. 

Where do our children with PANDAS and Lyme come into this? We, as parents, must question authority. Every week, on the PANDAS suppport threads, people write about doctors who dismiss their children's symptoms and deny that PANDAS exists. However, once we do find a good PANDAS doctor, our children have to take all their medicines. They must obey us in this, although many of these medicines can cause averse reactions. Where is the line drawn? How do we know what is helping vs. that which is harming? 

Truth
Many normal childhood behaviors we see can be viewed in different ways. Stubborness can be perceived as perseverance. Attitude becomes confidence or defensiveness.

For our children who suffer from PANDAS, Lyme or any other affliction, we need to take a good long look at how we as parents and teachers react to their behaviors. Because their "negative" behaviors are often consequences of their illness and not attempts at shirking work or snatching a new toy. Rewards, and not punishments, are the best way to go. Our children already feel badly about themselves.

But these kids of ours are resilient. Respect their grit and build on it. They are forced to be strong and persevering. They need constant recogniton for each of their strengths and for every achievement they make despite the many obstacles.

And kids know what the story is. They do. Kids really know everything.

Turmoil and Change

We are reeling from the tragedy in Sandy Hook, Connecticut. And as we grapple with the motives of the killer, we are ever so aware of the potential for violence in people with some sort of mental disease. We can't help but look at PANDAS and Lyme which can result in violent threats and behaviors. People are writing that the murderer may have had autism or Asperger's. Others are pointing their fingers at gun control.

Why? Why? Why? we all ask, as we grieve. As we grow angrier and angrier.

Walk into a psychiatric ward and you'll see that this country is not equipped to really help those in need, especially our children. Our psychiatric hospital system is barbaric in so many ways. The people who are the most needy do not have voices. And their families are often too ashamed to demand more. We have been taught to keep problems closeted.

The doctors who figurately work past the 9-5 day, those who follow a different path because they have to make a difference in this world, those who perhaps don't buy into the norm of easy diagnoses, people like Dr. Jones and Dr. Trifiletti, are not honored. Instead, competing doctors, disgruntled patients or an archaic health system instigate investigations into their practices, thus trying to dishonor their characters and prevent them from helping people. 

The time for change is now--but what direction will it go in? Gun control is always a hot issue, but it doesn't take a gun to do a mass murder. Psychiatric hospitals tend to dole out medication so that symptoms aren't as prevalent. But who ends up paying for this? And as we PANS parents know, psychiatric meds can actually exacerbate the symptoms we are trying to treat in our children. 

We have so far to go in terms of science. And humanity. 

Bless our children.