To Test or Not to Test

A blood test to determine whether your child has PANDAS is now available through Moleculera Labs.

I am thrilled. I've been anxiously awaiting this test. 

But now that it's available, I'm not sure that I will have my son take it.

On the positive side, this test could tell us definitively whether or not my son has PANDAS or PANS. But do I need a test to tell us that? Four independent, knowledgeable doctors have already diagnosed him and the treatments are slowly working. Through these doctors, we also discovered that he has Lyme Disease. All this occured after he was previously misdiagnosed as having a mood disorder, tic disorder, and more. Psychiatric drugs did not help. IVIG does work. My son has PANDAS. I don't need another blood test to confirm it anymore. 

However, this test is integral to the worldwide fight against PANDAS. Had this test existed 3 1/2 years ago, and had our pediatricians deemed it important to rule out PANDAS before subjecting my baby to psych drugs and a psychiatric hospital, we all would have been saved a lot of grief, suicidal attempts and dangerous medications.

We need a medical test that pediatricians can utilize when a parent brings in a child who has had a sudden change in behavior. Or when a parent brings in a child with a set of behaviors that have existed for a long time, without an effective treatment plan. I know of at least one child who has probably had PANDAS from the time he was very young; there was no sudden onset. Doctors are very quick to push either the "psychiatric" or the "autism" diagnoses.

On the positive side, perhaps this test will push insurance companies into treating PANDAS. But if my son tests negative, will insurance companies stop covering our costs? He also has Lyme Disease, but we know how much insurance companies recognize chronic Lyme Disease. 

Part of me would love to just have the test results. I would like to support the doctors who have been studying and creating the test. However, the test would cost me $925. I don't have $925. I've been dropping an extra $925 a month on medical bills for the last few years. I'm out. Insurance may cover some of it. Maybe. But I'm still left with a large bill. And for what? What can this test do for my son that we haven't already done? If I had the funds, I'd test him and not get insurance involved at all. Our doctors would know how to handle the results either way.

But the person I really want to test now is...my healthy daughter. If this test weren't prohibitively expensive, I would have her tested in a heartbeat. I am forever questioning every little symptom she displays...is it normal? Is it a copycat behavior? Is she striving for attention? Does she have PANDAS?

She's really a happy, healthy kid. When she got sick recently, she ran a fever. I rejoiced, much to her dismay. "But you have a fever, sweetie! That's wonderful! At least you get sick the right way!" My son doesn't get fevers often. When he had the flu, his little germ-fighting cells attacked his brain instead. He became a terror. See my symtpom list and you'll know how he acts when he gets exposed to germs. Fever: Good!

PANDAS seems to run in families. Autoimmune diseases seem to run in families. My husband has a different autoimmune disease. I hope I'm not the only odd-man out, that is, I hope my daughter has also escaped this life sentence. But a couple of Lyme strands here, a strange tic there....and I fear for her. Having the knowledge the Cunningham panel test can provide would be enabling. 

Or, perhaps unnecessary in my daughter's case. We have an upcoming appointment for my daughter with my son's integrative doctor, with the goal being to keep my daughter's immune system as healthy as possible. Also, children with PANDAS have been helped incredibly with homeopathy. One does not need a diagnosis to treat homeopathically. One doesn't need a diagnosis to strengthen the immune system. Homeopathy is a likely alternative as well. 

We have choices as to treatments. Until now, we haven't had many choices as to finding a doctor or test that would properly diagnose our children who suffer from this autoimmune disease. My husband and I have spent tens of thousands of dollars and visited scores of doctors to find a diagnosis and a treatment that words. For ONLY $925 and a simple blood test, you can get that diagnosis now.

But not if you live in NY or a few other states. By the way, NY also doesn't believe in Igenex testing for Lyme Disease. Oh, we have far to go. 

A Night at the Aquarium and other Fear Factors

Could it be that I was the only person awake in the entire aquarium at 2:26 in the middle of the night? All around me, girls and their moms slept, huddled in sleeping bags adjacent to fish tanks. And did I really have to go to the bathroom? I must have been a mile from the bathrooms. 

I slipped out of my sleeping bag which lay atop a pad half the size of a normal twin-sized bed. The gurgling of nearby fish tanks hid the whispered breaths of all the Girl Scouts and moms who lay sleeping in their own sleeping bags. In socks, I padded past one bagged sleeper after another, past the pollock, past the shark room and the girls surrounding the tank in their sleeping bags, past the jelly fish room, past the turtle's tank, to the bright lights of a paper-strewn ladies' room. And I marveled that I'd never heard so many silent sleepers...not one man in the building and not one snore (sorry, men!)

Remind me why I never camp, why I never lie on a floor for long. With a back that's only crooked to a chiropractor's eye and an X-ray machine, I do everything--well, with the exception of lying on floors and long-distance running. Sleep was elusive, but I had to sleep as I had a long car ride the next morning with my little daughter and I was the driver.

Still, I was happy. I would be sleep-deprived for the second time this week. But this time, it was a good sleep-deprivation, if one can be good. My daughter dozed between friends, after a night that included an amazing INSIDE TOUR of the aquarium (we saw the shark tank from above!,) a late dinner (no, we didn't eat fish,) games and crafts. It all felt so...normal?! Special, and normal. Not one tantrum, not one rage or sign of depression. Just my eager-to-please, easy-to-make-happy Girl Scout, her fellow female troopers and about half a dozen moms. (Plus a couple hundred Girl Scouts from other troops.)

What a way to end a week. Or a way to start a new one.

Rewind. Sunday night and my son was herxing. A Herxheimer's Reaction occurs when Lyme spirochetes are killed, and kinda explode in the blood system, resulting in a worsening of symptoms. The first time my son ever herxed--that is, the first time we knew he was actually herxing--he climbed out of his second floor window in an attempt to catch some air. He didn't know who I was. 

Sunday night wasn't that bad. I got him into an epsom salt bath which helps to pull out the toxins. He thought there was a noodle in the bathtub. There wasn't. You never know; we do cook Korean noodles and some of them are clear, and if a sloppy someone dropped a noodle down their shirt and then washed.... But no. No noodle.

My son's voice changed. He sounded quite British, but not proper. Heigh ho. British drunk, perhaps, with words slurred. I actually taped him. He was still in control, although not quite himself, and his joints were hurting big time.

On Monday, alone in my classroom at lunchtime, I found a text from my son. "Im suicidle mom need u." In fact, he'd even hung his teddy bear from his dresser with belts. How do I know? He sent me a picture.

OMG-OMG-OMG! I called him immediately and although he was unhappy he was calm and not really suicidal. My husband had everything under control. I called the doctor, who was extremely responsive. Of course, you're probably thinking, the doctor would be responsive, but after working with so many doctors, I don't take this kind of response for granted. Most doctors would want to toss my kid into the hospital. One Lyme Literate doctor did suggest this to us once and before we knew our son had Lyme and PANDAS, he was placed into the hospital after cutting himself.

So we pulled back on the medicine that caused the herx and my husband admininstered activated charcoal and burber to bind and yank out those toxins...and onward through the day I went.

A faculty meeting was called. A colleague of ours, 44 years young, had gone in for heart surgery, the same surgery a neighbor of mine had undergone, and in the same hospital. But he wasn't recovering fast enough. Prayers, positive thoughts and miracles were needed.

I drove home, feeling devastated, praying to a G-d I would like to believe in, and  flicked on the radio. And heard yet more bad news. The Boston Marathon had been bombed. 

Move forward two days. Dan was still alive and I was thinking that no news was good news. My son's sleep-deprived EEG, scheduled because his face became numb for a couple of hours before catapulting into tics, was set for Thursday morning. As he was only permitted to sleep 4 hours that night, it looked as though neither my husband nor I would sleep much either. Despite the state tests, I had taken off Thursday from teaching so that I could be there when my son was given the EEG.

But plans change and my students became more of a priority than the EEG and my own son. Our beloved music teacher had died.

Thursday was a teaching day from hell in some ways. The state test was postponed, of course. Children walked into school sobbing. Teachers were given whatever support was necessary. But the day opened with talk and tears and tissues. Teachers, bereavement counselors, administration and the guidance office was hard at work all day. I was sleep-deprived and sad. I kept wondering when I'd stopped hanging out with Dan and others at lunch. Probably ever since I started staying in the classroom and working through my lunch. And was I too obsessed with the problems of my own family to hear those of others? Had I hugged Dan? I couldn't remember.

As it turns out, Dan had an unusual heart and he kept this information to himself. No one knew he had any type of disability. He lived his life with music, wit, zest. And with his direct, funny, bright outlook, he touched the lives of hundreds of people.

He lived the way I'm not living. Ironies. I don't hang out with friends much. I don't date my husband anymore. I...well, I'm a teacher during the day and a caretaker after. And when I get a chance, I reach out through the computer, through my words. 

Flash to Friday: Funeral and then MRI. I bought a bottle of pomegranate liquor Friday night, trailing my daughter with me to the liquor store, at 8:45 at night. So not like me! And sooooo good on ice.

Saturday was our trip to the aquarium. I felt alive, a part of a world I'd lost for a long time. They kept us up late, and I was tired as anything, as was my little girl who is accustomed to an earlier bedtime. But it was fun being with other moms and happy kids.

My daughter and I woke up early Sunday morning. After exploring the meerkats and the touch-a-stingray tank, we set off on a 3 hour drive for her summer camp orientation. She fell asleep in the car, the lucky duck, snug in her sleeping bag in the back seat. I found an oldies station that played Dionne Warwick and other songs from way back.

"Don't tell me what it's all about 
'Cause I've been there and I'm glad I'm out 
Out of those chains those chains that bind you 
That is why I'm here to remind you...."

I came home and started teaching myself Fun's "Carry on" on the guitar. My daughter will learn to play the drum part. We will make music together.

Destiny: back to the world of living.

I have to learn from Dan's life and his too-early death. There were hundreds of people at the funeral. This was the second funeral I'd been to in four weeks, and both events celebrated people who had a positive impact on others. I teach. I go home and take care of a sick son. I care for my daughter. But I neglect myself, my marriage and life in general, lately. I long for the days when I can travel again, go on vacation, shop and drop a bit of money that I don't have anymore.

I need to make changes. Spring is here and with it, bicycling. Despite setbacks, my son is in a better place than he was a month ago. Life goes on and it goes fast. I need to find ways of making the most of it.

Carry on.

POTS, PANS, Cinderella and The Little Prince

That Cinderella would be me. When I'm not working, you can find me at home, washing laundry, folding clothes, re-folding said clothes after my enraged son dumps the basket all over my bed and floor, running epsom salt baths that he won't step into, prepping food that he won't eat, scratching his back until he falls asleep. Waiting for Prince Charming to sweep me off my feet.

.

But wait--what happened to Prince Charming? He became Cinderfella and is snoring on the sofa after playing nursemaid all day. Meanwhile, the happy little animals--my daughter and our 4 year old puppy--scamper about, trying to help out while avoiding the dancing dishes. OK--that's an exaggeration. A cup was thrown, but only once, and not at anybody. Still, it was filled with tea. So it was more likely to singe than sing.

Enter: The Good Fairy. Enter: The Magic Wand, in the form of propranolol.

We began giving propranolol on a Friday. On Saturday, our son was happier, less anxious. His rages were GONE! Zero! His headaches were history!

Score! Propranolol: 1, Migraines: 0

On Sunday, our little prince was totally back-- his adventurous, interested, loving, boy-self personality. Whereas a week ago, he'd fretted about going to a supermarket, now there was little anxiety about heading out for a day in the city. He ate up the day. 

On Monday, Cinderella (yes, that is me,) left for her day job after a week staycation and forgot to give the little prince the new medicine. By Monday evening, he was feeling rage-y. By Tuesday morning, he had a migraine which he described as feeling like someone was hitting his head with a baseball bat. Fortunately, the Tuesday morning meds kicked in and by afternoon, he was happy and easy-going again. 

But the witches come at night.

Or, to mix fairy tales with Les Mis, the tigers. ("As they tear your hope apart.")

Fatigue + Hunger = Mad + Miserable. Even with food given at intervals (we're not new to this protein thing.) But each night since, it's gotten a little worse. We added propranolol at night, as was our doctor's original intent, but since Friday, the witches have overpowered us anyway.

Wanting to know why the propranolol was working, I did a little research. Propranolol is a medication used to lower blood pressure. It's a beta blocker, stifling the flow of adrenaline (epinephrine,) which can result in that fight/flight complex that our PANS kids can get, therefore also helping with migraines and anxiety. A subset of our world's teenagers have POTS (Postural orthostatic tachycardia syndrome.) I'm not saying that is what my little guy has--I really don't know, and it's dangerous for me to say this without consulting with our Good Fairy (doctor) because there are other syndromes or issues that can be resulting in his symptoms. (PANS parents have written in about mitochondrial disease and Mast Cell Syndrome, as well as others.)

So, my kid definitely has PANS. We don't know about POTS. Just that the propranolol worked--for a few days. And those few days were straight out of a fairy tale! Fantabulous.

Even with the new medicine, he continues to have separation anxiety at night and sleeps on the floor of our room. His ultra-loud throat-clearing tics woke me up at 6:15 Saturday morning. His OCD is bad at night (the tigers come in the form of not wanting to live.) His joints hurt. PANS and Lyme are alive and kicking him. 

NEWS ALERT: That cute little fuzzy animal (my daughter) caught a virus and has turned into Sleeping Beauty. Her germs are toxic. Can we keep her in a glass room? And can the little prince not get jealous when I dote on Sleeping Beauty?

We follow up with our doctor this week. And I'm hopeful; I still see improvement.

But for now, my message is this: if you don't already have a doctor who thinks outside the box, who is willing to look beyond the PANS and/or Lyme for either another syndrome or a syndrome caused by the first diseases, go out and find one. I savor the few days (and nights) that our little prince got his smile back--his real smile--and my faith in a happy ending has increased. 

We'll get there. As they say, if it's not OK in the end, then it's not yet The End.

Back to sweeping floors....ahem, and carting laundry down to the dungeon.

Enough, already!

There is a Jewish song/prayer that is sung at the Passover Seder: Dayenu. Enough. Basically, it goes like this: If G-d had only divided the sea for us, it would have been enough. (But G-d did more.) And each stanza builds on that...If G-d had only given us the Torah, it would have been enough.

I like to keep a pretty positive perspective, when I can. And even though I'm happy today--we are trying something new and so far, I see good results--I can't help thinking that there's another side of the poem Dayenu. Enough, already! I've had enough. Basta!

My new version goes like this:

If my child were 'merely' tic-ing, that would be enough.

If my child had only OCD, that would be enough.

If my child had just depression, that would be enough.

If my child had only suicidal depression, that would be enough.

If my child only threatened to kill himself once, that would be enough.

If my child only had occasional temper tantrums, that would be enough.

If my child only had occasional rages, that would be enough.

If my child only had loss of reading ability, that would be enough.

If my child only had loss of handwriting skills, that would be enough.

If my child only had loss of mathemetics facts, that would be enough.

If my child only had processing problems, that would be enough.

If my child only had sudden expressive language issues, that would be enough.

If my child only had visual/spatial issues, that would be enough.

If my child only had separation anxiety, that would be enough.

If my child only had aches and pains, that would be enough.

If my child only had PANDAS, that would be enough.

If my child only had Lyme Disease, that would be enough.

Why the heck does my child have it all? And what do I tell him about G-d when he asks how G-d could permit this? Why do bad things happen to our children?

Now, start singing that happy tune:  "Di-Di-anu...."

If my child only had sweetness, that would be enough.

If my child only had strength of character, that would be enough.

If my child only had the intelligence to keep it together in front of everyone else in the world, that would be enough.

If my child only had the athletic ability to continue playing sports when he feels ok, that would be enough.

If my child only had the love inside to let us know how he appreciates our help when he's able to communicate this, that would be enough.

If my child only had the arms to hug, that would be enough.

If my child only had those big brown eyes that teared up as he implored me for help, that would be enough.

Enough. We do all we can do to help our children. But it's not yet enough.

Shop Till You Drop

This is the new anxiety: my tween boy won't go anywhere in the car. He doesn't even want to take a ride to Starbucks for a soy latte. He certainly doesn't want to visit a friend or family member out of state. Playing with friends in the neighborhood? All good. Clean up his room or put away clean laundry? Not good at all. Ask him to do something he does not want to do, and you get a major stress attack, complete with rage and whatnot.

We decided that we would not take it any longer. My husband, who works from home and takes care of the not-so-little guy during the day, feels trapped. We are being ruled by a kid who not only has PANDAS but uses his PANDAS symptoms as an opt-out method.

After reading that giving in to anxiety (and OCD) only makes it grow stronger, like some Voldemort that grows on frailty and fear, we let our son know that he was going to a supermarket with us.

As the joke goes, and then, the fight started.

If you don't have an Hmart near you, you're missing out. It's a Korean Supermarket and I mean Super with a capital S. You can buy the freshest fruits and vegetables for decent prices. You can select a fish that is still swimming. You have a choice of many different brands of seaweed, rice, green tea, frozen dumplings (they're great, just not gluten-free.) You can also purchase Chinese, Japanese, Korean and French bakery food from the food court. 

I needed to buy a bamboo mat so we could roll our own sushi, plus the ingredients. I also needed fish so I could make my own gefilte fish (gluten-free) for the Passover Seder. And if you've never had my husband's Brussell sprouts--purchased fresh from this store--you have yet to sample a fantastic dish. 

Our boy curled up on the sofa and declared he wasn't joining us and that we couldn't make him. "Oh, yes, you are and oh, yes, we can," we told him. "If we have to carry you out to the car, you're going."

And that's what we did. My dear husband half carried him out to the car. I tossed his sneakers into the backseat. He did pull in his feet so we could shut the door, all the while yelling at us. He threatened to take off his seatbelt (and did.) I told him that if we were stopped by the police and fined, he would use his birthday money to pay. The seatbelt went back on.

"I'm staying in the car," he said as we pulled into the parking lot. 

"You're coming with us," we told him. And he did.

"I don't feel good," he said. "There are too many people." So I walked down an empty aisle with the shopping cart, and he followed. 

"I'm going to throw up," he warned.

"Then go to the cash register and ask for a bag," I told him. He didn't.

"I'm going to be sick," he said again.

I said, "If you continue to make this difficult for us, we're not making sushi tonight."

"Really?"

"Yes. If you throw up, I'm not buying the ingredients for sushi."

Well, didn't that just change things a little bit and for the better.

"I have to go to the bathroom," he announced. We threaded our way across the store and found the bathroom. When he came out, four minutes later, he said, "I feel ok now." 

And from then on, he was great. We found gluten-free, dairy-free snacks (rice flour and sugar) that he could eat. He was smiling and sociable. Treated his sister kindly.

But today is another day and he's been dead-set against going horseback riding. What I would give to horseback ride! Oh, he's going. 

We are putting our booted feet down once again. Time to shrink that Voldemort.