I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Blog Index
This area does not yet contain any content.

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Wednesday
Sep192012

Help Wanted!

Wanted: Pediatrician who takes insurance to work alongside family and PANS/PANDAS/PITANDS and Lyme Literate doctors to help cure a child. Must be open-minded, compassionate and a lifelong learner. Must be a problem-solver and a good listener.

(Note: I just interviewed an exceedingly nice pediatrician for this role, only to discover that he doesn't believe that Lyme is so prevalent and that antibiotics should be given long-term. He was genuine and almost regretful but told me he cannot work with us. Where do we find somebody who can help guide us?)

Wanted: Therapist, young-at-heart and energetic, with a working knowledge of kids who have neurologically-based behavior issues. Must be able to relate to kids who look fine on the outside and store up all their stress for home. Must trust parents to report the facts. Needs to understand that PANS is a medical disease that afflicts children. Must be a lifelong learner and the kind of listener who hears between the spaces of words.

(Note: My son tends to relate better with younger and more attractive therapists. Shrug. Here's a story: when he was 3 and in the kiddie pool at a club, the lifeguards changed. A new girl with long, silky blond hair and a sweet face came over. Before we knew it, our little guy was throwing himself backward in the water, saying, "Help!" This is not a learned prejudice. He's just a picky little guy. He can relate to warm, open-minded, young-at-heart men, especially if they connect over football, but tends to like talking to women better.)

Wanted: Teacher who is open-minded, forgiving and compassionate to explore alternative learning techniques for a child who has encephalitis due to Lyme Disease and PANDAS. Must understand that homework is a major stressor that can trigger setbacks. Must read up on PANS and be creative and activity-based in approach. Must find a way to make learning fun and exciting.

(Note: I am a teacher. This is a tough assignment. I have 22 kids in my class and I consider myself lucky. Some schools have class sizes that are much greater. But 22 kids when one is a child with PANS is challenging. My son came to my class last year for a day. Everything we did was activity-based but his brain-fog made the math stressful for him. At home, I'm mom and not a teacher, although I try. But he rebels. So does my daughter. Hey, they don't like it when I sing either. Two of the things I'm really good at. What happened to respect?)

Wanted: A Lyme-Literate Doctor who is experienced, successful in fixing our kids and who takes insurance. Unfortunately, this is an oxymoron, because Lyme Literate doctors are being kicked around by the CDC and insurance companies who refuse to believe that so many of our children can have Lyme Disease. I am at grateful for the courageous LLMDs that we do have. I am not grateful for the hole in my pocket. I don't blame the LLMDs for that.

(Note: I wish wish wish that there were about 1000 Dr. Charles Ray Jones all around the world. And that these doctors all took insurance and were not being persecuted by the doctors who disagree with them.)

Wanted: PANDAS doctors who can offer IVIG and get everything covered by insurance. Oh, but wait. Aren't some insurance companies refusing to cover IVIGs for PANDAS patients? IVIGs can run parents about $11,000 per 2-day dose. There are parents who are selling homes in order to pay for the needed treatment for their children. Hey, at least PANDAS docs don't tell us that our kids are crazy.

(Note: WE've been lucky with this, so far. So far.)

Wanted: Documentary producer willing to take on a world-wide project aimed at showing audiences what PANS is doing to our children. Think of what "Under Our Skin" did for Lyme.

(Note: I did speak with one fantastic film-maker. $$$$ is needed. Donations. And very possibly, a celebrity whose child suffers from PANDAS, to help sell the whole idea, this person said.)

Wanted: a school for children who have PANS and have trouble learning in traditional ways. A school that notifies parents if one child comes to school with an infectious disease. A school that keeps our children away from germs. Teacher to child ratio: 1:5, with social workers and guidance counselors.

(Note: wishful thinking)

Wanted: a summer camp for children who have PANS so that they can meet one another and enjoy regular activities that appeal to children. Camp counselors will all be trained in working with children who have low frustratio tolerance (and tics, OCD, enuresis, night-walking, nightmares, etc.) Counselor to child ratio: 1 to 2.

(Note: my son stayed home with me all summer. ALLLLLLLLLL SUMMMMMMMMMER. He was not in great shape. This will NEVER happen again.)

Wanted: Hospitals that are PANDAS-friendly and Lyme Literate. When certain psychiatric drugs are administered to children who have PANDAS, their symptoms can be exacerbated. PANS-friendly hospitals will understand how to correctly administer pharmaceuticals. If we give steroids to children who actually have Lyme Disease, we're helping to grow the spirochetes. Also, we need hospitals that can take children when they're herxing. Psychiatric hospitals like to separate children from their families. Cancer hospitals would never do this. Why should children be separate from parents when they have a psychiatric illness or a neurological illness caused by an infection?

(Note: Get thee to a hospital, said the doctor to us. And at one point, we did. Little did we know what we were in for. Bad times, bad times.)

Wanted: Alternative health hospitals that use homeopathy and naturopathy to cure these diseases. Homeopathy is much more popular in the UK, India and Germany. It's not mainstream in the US. Even better--insurance coverage.

(Note: I find that even the best MDs don't understand homeopathy--they think it's natural medicines and vitamins. Our wonderful homeopathic doctor told me that homeopathy and antibiotics cancel each other out. Antibiotics kills while homeopathy gets the body to be stronger and take care of itself. We need so much more education in our country.)

Wanted: One night, free from my kids, my worries, my nightmares. One heckuva good babysitter is needed.

(Note: I want a night with my husband and friends, to wine and dine, dance, hold hands and to NOT talk about kids. So not happening. Every night at home is filled with turmoil. It won't be like this always.)

Wanted: A cure for my child.

(Note: Please?)

 

Sunday
Sep162012

A New Day

"It's a new dawn

It's a new day

It's a new life

For me" -- Michael Buble

It's Erev Rosh Hashanah (Rosh Hashanah eve.) I've made a celebratory meal of matza ball soup, roast chicken, candied carrots, sweet potatoes, berries, apples, honey and challah and I'm feeling good, that is, like a good Jewish wife and mom. I usually leave dinner to the better cook in the house--my husband. But I often orchestrate the holiday meals. This dinner has taken a lot of effort, especially since I whipped up most of it after my daughter's afternoon soccer game (they won!) And no, I did not put spinach in the cherry pie. Or anywhere, for that matter.

September is always a starting-over point for me. As a student who kept going back for more and now as a teacher, September remains the start of the calendar. It corresponds with the beginning of the Jewish calendar. And it evokes the calendar in my mind, which appears as an infinite oval, with the months spaced next to one another in different colors like gameboard pieces.

I have hope for this year. I think we have finally motored through the stages of grief. It began with denial, "This isn't happening to my baby!" It moved onto anger--at one another, at the doctors who threw up their hands in frustation, at G-d who could let this happen to an innocent child (and let the Holocaust happen to millions of children and adults.)

I think our bargaining was in the form of searching for diagnoses and cures...if we figure out what's going on, then can't we figure out a way to make everything OK? And my bargaining: I no longer believed in a higher power. After all, how could some powerful being allow so much suffering? I wasn't brought up to believe in devils or hell. Life began to take a hellish flavor. I already had doubts. What kind of G-d would allow the Holocaust? The murders in Rwanda? and elsewhere? But when my son was terribly ill from the Lyme and PANS, I automatically prayed.

The 4th stage of grief is depression, but that was here all along--my son had enough for all of us. We did everything to fight the depression. I remember crying through a 30 mile bike ride once, thinking that by mile 15, the tears would go away. Some of this was caused by doctors not believing us, or blaming us, as parents. And some of this was pure sadness over the fact that my baby was so sick and that I could do nothing to save him. On top of that, his illness was affecting my other small child and for a short period of time, our marriage. 

And finally, we are at the stage of acceptance. My boy is sick. He has Lyme Disease and PANS. He has probably had Lyme since he was at least two years old. His PANS (PANDAS or PITANDS--who knows) onset came when he was about to turn 9.

We get our son now. We know how to calm him when he's in angst, how to help him, how to ask doctors for help. My husband and I are partners, each taking over for the other in times of stress, each carrying the burdens of the day. I've never known of a man who does so much, cares for his family in such a way.

We cannot go back in time. We don't live in a fantasy book that includes time travel. I can't save him from what, perhaps, was meant to happen, if there indeed is a great plan. Conversely, I can't save him from something that should never have happened. We can only live in the today. And today, my boy has a medical disease and a medical diagnosis. 

Today, my boy gave me a hug and thanked me for making a great matza ball soup.

Today is a good day. It's about 4 weeks post IVIG--not even--and his tics have greatly decreased. His odd OCD moments still abound; he still must use a plastic spoon unless there aren't any, in which case he'll settle for metal. He's raging every night but the rages are smaller and his awareness of his own self is growing. So he's able to tell me, "I feel weird," or "I came inside because I felt a rage coming on." And we can put on the TV, which helps, or hold him, or scratch his every-itchy back. Or go for lemon-water, epsom salt baths, activated charcoal.

Today is a good day. We have a team of doctors in whom we trust. Dr. Trifiletti, PANDAS neurologist. Dr. Bouboulis, PANDAS immunologist. Dr. Charles Ray Jones, Lyme Literate pediatrician, Dr. Bransfield, Lyme Literate psychiatrist. (See the Resource page for links.) We have begun antibiotics once again. We might add cognitive meds. 

My husband and I are extremely happy with our son's schools. His guidance counselor and his teachers are genuine, caring and professional. Our son is HAPPY to go to school for once. He says he likes all of his teachers! I was so worried about him starting middle school, but it is the best possible place for him. If and when he falls apart, this school will be able to work with him, I believe.

For now, he's able to do some homework--yay! He's able to THINK. His processing is slow--far slower than where it should be, slower than it was when he was a little guy, but he is learning. He understands math that gave him trouble just a few months ago. His vocabulary is better than it was a month ago (again, the IVIG.) This kid will go places when we get him fixed up.

As for his sister, she is achieving in her own activities and interests--she has many passions--and we won't let her fall off this year. Last year, homework was sloppy. We had no energy to demand more. We were fortunate in finding a not-quite-teenager to tutor her in math (because me, the teacher, according to my daughter, wasn't good enough to help her!) And this began a wonderful friendship between the two girls, as well as getting her out of the house--so crucial last year. This year, the motto is to succeed despite the challenges. 

I'm tired constantly. Having hope and handling everything doesn't preclude me from fatigue. This was an especially difficult week. From my son breaking his arm to my root canal the following day, to our two-hour-each-way trek to an LLMD to my son's back-to-school-night and a subsequent meeting with his teachers, to evening soccer practices, evening football practices (despite my son's broken arm--which was not injured from football but from colliding with an 8 year old on a bicycle,) to teaching every day and dealing with mild behavior explosions at night...way too many doctors and the ER visit...I guess I have a right to lie in bed all weekend with a good book. I haven't bicycled in a few weeks and I'm too tired to miss it. But I don't have time to lie around.

Our challenges have not dissipated. From past experience, I know that my son will not remain at this halfway point of a good place. The tides will sweep back out. This time, we need to refrain from being tossed and carried along with these tides. We need to burrow our feet into the sand and stand firm.

That's my goal for us this year. Stability. Recovery. Hope. 

I don't look for miracles, just for incremental changes. And we are going to get there. We can choose to wallow in the anger and depression of grief, or to plod on forward. We choose to plod. And if G-d is truly somewhere out there and listening, please note that we are helping ourselves.

 

 

Saturday
Sep082012

Ode to my Hero

our Hobbit baby
curly hair, round face who liked two breakfasts

Brown-eyed toddler, draped over me,
watching Dick Van Dyke dance to 'Me 'Ol Bam-Boo'
in Chitty Chitty Bang Bang 
again 
again
again

Now my 6th grade boy plops himself in my lap
he wishes I were strong enough to pick him up,
he is nearly my height, same size feet and hands

When my friend talks about macaque monkeys,
my boy asks, What kind? There are 24 different macaque species.

He asks why his sister cries
(although he tries to make her cry other times)
He catches house spiders in her room so she can sleep
and scares her with talk of ghosts

Long ago, in a Brooklyn December,
he wanted to know why there were Pilgrims on the sidewalk. 
(Pilgrims with yalmulkes under their hats)
then, he wore a yalmulke to school for a week

His first words? "Tickle, tickle" as he ran after 
eighty pounds of German Shepherd plumed tail

He bicycles with me, thin legs pumping
in his ultra-wide, neon skateboard sneakers
thirty miles
hilly roads
forty miles.
with every small and large joint paining him,
without complaining
so that I'd know 
racing me up the hills

Rising early for football with his team
proud of his jersey, his pads, his tackles
running with friends in the street
searching for the mysterious swamp where someone once died, they say
where they will build a bridge
and a fort 

He read The Chronicles of Narnia at 9
when he could still read without those hateful mind monsters
Grew to love Shakespearean tragedies 
when home from school on new medication

stayed up till midnight one mid-summer night
for the fight scene in Hamlet
Said it was worth it
and closed his eyes on the car ride home 

Staged his own Egyptian mummy exhibit
after visiting the Metropolitan Museum
his own zoo on his bed after a Bronx Zoo trip
and his own sword fights
after seeing Jedi warriors fight

Writes raps (don't call them poems, Mom!)
about the mean games his diseases play on his mind
and tells his teacher that he climbed out his bedroom window one crazy night
and nearly killed himself

Back when needles meant allergy shots
He'd pretend the alcohol swabs were excruciating
and that the needles felt soooooo good

Now, he watches as the nurse slides the IV needle into his arm
he lies down for slim acupuncture needles
or waits for needles to collect his blood
6 vials
9 vials
can't find a vein

swallows his medicine, vitamins, probiotics, remedies
so many pills of red-yellow-blue-white
day after day, morning, night

the other evening, he came in early from outside
because he felt the rage
that had taken him the night before 

he needed to be far from people
I told him 
how proud I am
of his awareness, his control

the way that he is handling this disease
(that confuses so many)
How would I handle a Lyme Disease that blew my mind away at times?
Lyme that curdled my joints
and PANDAS that made me shrivel whenever a fork scraped a plate
that made me clear my throat
again
again
again 

In February of 2010, he cried out,
"This is a nightmare! I just want to wake up!"
I promised him he would get better
that we would figure out what was wrong

I still believed in band-aids and kisses
We had no clue 
We are still trying to wake up today

But this boy keeps fighting

What is your meaning in life? I ask,
And he says, it's to fight and get better

he wills it
We work for it
We're a team and we'll beat this thing 

to save my strong little Hobbit 

 

 

Note: there is a new book out that I intend to read: How Children Succeed: Grit, Curiosity, and the Hidden Power of Character by Paul Tough. My son has grit, curiosity and character. I know he will succeed.

Monday
Sep032012

If Life Were a Story

Warning: Not suitable for all audiences. This story could happen to anyone, but includes implied violence.

Once upon a time, two people fell in love, traveled together to colorful countries, bicycled together over hills and bridges, and ultimately married. The dream.... Sigh. Smile. No Nicholas Sparks turmoil here, just pure hearts and honeybees, unicorns and rainbows.

They bought a house with a fence in the backyard and painted it white. They got a puppy who would grow up to be an 80-pound German Shepherd. And in the next couple of years, they gave birth to two beautiful children. Sigh. Smile. Butterflies and flutterbies.

Now, good reader, if the story ended here, it wouldn't be much of a story, would it? No plot. No conflict. How utterly bo----ring.

Introducing: conflict. The dog suddenly dies from cancer. The spouse's company closes and finances grow tight. No more nights out. No more traveling. And now--the worst of it: their oldest child grows ill.

Even worse, it's an invisible illness. The child screams and cries, "This is a nightmare! I just want to wake up!" He is barely 9 years old and tries to kill himself. They hide knives. They hold him down. The younger sibling is terrified.

For a good story, you have to make your protagonists suffer. Take it all a step further.

How can we make this even more challenging? Doctors misdiagnose, blame the parents, think the child has learning issues, suspect behavioral problems. 

Hey, from a writer's standpoint, now, we're talking! Conflicts abound. The story becomes intriguing.

But let's not forget our protagonists. They need to take action. And they do. One spouse begins his own company, tapping into his creativity. He works from home so he can care for the kids as well, working on the computer while the kids run around outside, preparing crockpot dinners and driving the kids to football practice, soccer practice and the hundreds of doctor appointments. 

The other spouse teaches elementary school children all day long before coming come home to her own two, also drives them around to Girls Scouts, and doctor appointments, reads them Raold Dahl and Christopher Paul Curtis books until they fall asleep, and then spends nights investigating. She's a detective, reading and researching, talking to people in person and on the internet, to figure out what is going on with her child.

Cool. Now this is a full-fledged mystery, complete with red herrings.

Other parents who have walked the same path help the parents on their quest to save their son. Eventually, the parents visit the Gurus...wonderful doctors who believe their tales, from PANDAS specialists to homeopathic NDs to Lyme Literate MDs. Doctors prescribe antibiotics or homeopathic remedies, vitamins and probiotics, low-carb diets and gluten-free diets.

Still, the child rages and sobs. Will this nightmare ever end?

We have the plot, the conflict, the setting, the characters.

We have the mood: sad, frustrated, angry, defiant, determined.

We have the themes: bravery, perserverence, family, love, friendship.

SPOILER ALERT! Don't read on if you haven't yet seen the movie!

Well, just kidding about the spoiler alert. Because the resolution has yet to be written. Must we have a final conflict, a damaging one, an all-out car chase, complete with gunfire, before the story can be resolved? Or can the magic "cure" suddenly begin to work, with one day melting into the next, better day, and so on?

There are no magic spells, no prince or princess to ride in and save the day. As a writer, that's the biggest cop-out ever. But wouldn't it be nice for this family!

The parents must write the final chapter themselves. They will try different remedies, different treatments until they locate the right combination for their child. In the meantime, they must deal with the rage and sadness of one child and the fear and sadness of the other. 

So the parents, ever the protagonists, plod on, until the final chapter of this mystery/horror story is written. 

Someday, there will be an epilogue, letting the good reader know that the child grows up to be a happy person who travels to colorful countries, perhaps crisscrossing continents on his bicycle. His sister becomes a happy, healthy person who lives with meaning in life. And the parents...well, the story must have wonderful times ahead for two people who fought and won this brave battle. May they be inscribed into the Book of Life.

Monday
Aug272012

Wish List

"I grant you 3 wishes," hissed the genie.

"Only 3? Can I use one of my first three wishes to wish for more wishes?" the poor fisherwoman asked, frowning. "I have a lot of needs."

"You can wish all you want," snarled the genie. "But you'll never get everything you need, so wish carefully."

*****

What do you most wish for in your quest to--let's put it bluntly--save your child's life? Please--send in your wish list! Either add to the comments here, or post it on the FB page!

Well, here goes mine:

Wish #1: Certainly, the obvious: Money. I just read an article in People Magazine (my go-to for junk-reading--I LOVE it) about a televised family trying to save their child from autism. They are grateful that they have the funds to see the good doctors, therapists, etc.  Not all of us have that.

Wish #2:  Excellent doctors who actually believe that PANDAS and Lyme Disease exist and that my kid's mood, sensation issues and fatigue are not caused by his inability to add 47,314 and 98,039 rapidly in his head.

Wish #3:  Family support--outside family, inside family, spousal support, if one has a spouse. We need emotional help. And if one can't get it, one absolutely must buy it--get thyself to a therapist. Because you just can't go it alone in this battle. The stress alone will bring you down. (Hey--just read an article that says probiotics help with stress...check it out.)

Wish #4:  A genie to bring a healthy dinner every so often--even to freeze, because there are days when my husband and I are both working and the kids are screaming, or maybe they are their sweet selves but ravenous, and we just don't have anything to put on the table. Note that I wrote healthy. We can do the spaghetti thing ourselves. All unhealthy carbs. So much for going gluten-free or white-flour free even. My kids don't eat it.

Wish #5: Take my kid.  Really--and please! Take my kid out of my house! Either one. Because I have to keep the 2 of them separated when my son is in a flare, which is often (like, almost daily.) My two chickadees used to be the best of friends, used to play with the stuffed monkeys we bought at the Bronx Zoo together for hours. It was soooo cute.

Well, folks, cute is over. You only need to take one because you don't want them together. What often happens is that my husband and I each take one kid and make for the hills. Therefore, I don't get time with my husband, which is not the recipe for a good marriage. The funny (and good) thing is--my son can go out with friends and you'd never know he has Lyme or PANDAS (until he gets a little silly--kinda ADHD behavior)--he saves it all up for HOME. He's clever and charming and smily and sweet. Enjoy! So, take my kid--just not permanently. Cause I do love them both.

Wish #6: Genie--I wish for someone to do my laundry!

My daughter is a girl who likes clothes. And doesn't like putting them away after she wears them for ten minutes. Need I say more?

And both kids leave socks all over the house. It's taken me a while to learn not to buy cool socks, but to purchase about 18 pairs of identical white socks for each kid. Someday, I'll be able to get rid of my pillowcase of unmatched socks. New problem: the socks for each kid are starting to look alike. And my son's white athletic socks are growing in size and will soon be identical to those of my husband. Not a big problem, really, when compared with PANDAS flares. It's just that sorting clothes socks. Scuse the language.

Wish #7: Show my dog some LOVE. By walking with him, running with him, hopping with him till he drops. Because he's a stress-barometer and when he's stressed, he looks me right in the eye and urinates on the floor. He's hyper, he's cuddly, he's 3 years old, but he's no superdog. 

Wish #8: Genie--be that mirror, mirror on the wall who tells me that I'm better than OK.

Please remind me that I'm doing everything I can, that it is ENOUGH, even though there is no cure that meets every child's needs and if I don't keep searching, no one else will help, and my child's life depends upon me and I mustn't ever stop because he's the best little guy in all the world and someday, he'll be better and happy and he's so darn gorgeous and articulate, he could be a great spokesperson for PANDAS and Lyme, or a movie star or a Broadway singer or a firefighter or a scientist or a horse farmer or whatever he wants, as long as we keep him ALIVE today--so Genie, please stop people who want to criticize in the guise of giving advice and without reading up on PANDAS and Lyme--and tell them to stick it in their own ear--and have them instead pat me on the back and make me feel good for five minutes. I need a full bucket. It takes a lot more positive talk to fill a bucket and only a few negative comments to empty it. That's why I love my FB PANDAS support groups. Genie, you did give me other PANDAS and Lyme parents for support.

Wish #9: Sleep. Perchance to...actually rest?

Today, I dreamt that my husband woke me up. No, it wasn't romantic. We were staying over at my inlaws' and I knew he had to get home to work. In my dream, I told him I'd have breakfast in the car. I just wanted a few more minutes of sleep. I'd gotten up early because of that darn dog who needed to go out. Just a couple of minutes after my dream, or maybe it was an hour--you can never tell with dreams--he really did wake me up.

Wish #10: Take me away! And not to a Calgon bath. Make it Bermuda, Venice, Santorini, New Zealand, even upstate New York, LBI, Montauk or a weekend trip into the city. I need a vacation--a solo (maybe with the husband) vacation--without worrying about my kids. I have learned from my inlaws that one never stops worrying about kids--they worry, worry, worry about us and I have to say, that although I'm not used to it from my side of the family and sometimes feel that it's too much, it also feels good, because that's how much they love us. I guess it's not possible to leave my children for a few days and not worry about them, but I have never had the chance to figure this one out, since I've never had the chance to leave them!

Last weekend, we went out with friends of ours. First time we'd been out since...(ummm, hiding head,) May!? They have teenagers--truly wonderful ones--and we left our kids with their kids and had the best night we've had in...well, the best night we've had for a very, very long time! 

Living with and saving a child who has a chronic disease is a challenge. Oh, boy, is it. But there ARE things that a wonderful genie can do to alleviate some of the stress. What would make your life better? Ice cream?