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

 

 

 

Monday
Jul162012

The One Who Got Away: The "Well" Child

When my kids were 4 and 2 years old, we took them out for Sunday morning bagels. Much to our embarrassment, they'd sit at the bagel shop table and greet everyone who came in. People would smile and wave back. Life was sweet.

My oldest child was born with a "party-personality." He is now the one ill with Lyme Disease and PANDAS. My littlest and healthy one was gifted with confidence, clothes-sense and people skills. Her pre-K teacher said that she had a "magnetic personality."

But everything changed with her older brother being so chronically ill. That confidence has been replaced with anxiety. Her cheeriness is mingled with sadness and anger. Her sense of well-being has been replaced by the experience of having one of the people she loves most in life strike her down with harsh words. These words might be sightly more accepted if this were a normal sibling relationship and spoken in the throes of a brother-sister disagreement. But hearing, "I wish I didn't have a sister!," and, "She makes things worse for me," again and again, despite our efforts to halt them, is too much.

And that experience translates into the outside world. It's incredibly painful to see, especially as girls experiment with cattiness anyway. She tends to gravitate to girls who can be nice, then nasty. And she responds back quickly, impulsively. Which then causes other girls to choose sides. And not hers.

Daily, she comes home saying that so-and-so is being mean to her. And we haven't always believed her. But maybe we should? How many times do we contact a school to let them know that she thinks she's being bullied?

And there's more. Her room is a mess. She cannot stay organized. She doesn't realize her own behaviors when she reacts to her brother. She cannot see that he is sick at times. She worries that she will also get sick. She craves the attention he gets, even though we give her hours of time and affection. Nothing is ever enough for her in our little world. She feels guilty that she's ok and her brother is not. And he resents that she is a "regular kid" and has it all, when he doesn't anymore.

So many families who have children with PANS are struggling with more than one child being stricken by it. That's our anxiety. Might both our kids be invisibly sick? Her waking up at night is stress and sadness. Her cutting the hair off her dolls is a cry for help. Her twisting her lips is NOT a tic after all. Oh, we've had her tested. Could she have PANDAS? Lyme? No and no.

She calls this, "The House of Stress" and cries when her brother yells, stumbles because he's off balance, or wakes her up in the middle of the night with loud tics. She's angry with him, especially because he doesn't like her when he's in the midst of a low-spell.  She plays with him when he's feeling good and loves her again.  What am I teaching my child? What kind of relationships will she have in the future?

We attempt to keep the two of them as separate as possible in order to protect her. But to really protect her, I need to let the world know about what she must endure, and how she reacts now to other children as well. She has become accustomed to one she loves being downright verbally mean to her. And the only way we can truly save her, perhaps, is to get her ill brother out of the house. Which would teach her that if she misbehaves enough, we will get rid of her, too? 

Not an option, though. There do not exist any Lyme or PANS-literate schools and hospitals. And my sick son needs his parents. You don't kick out a child who suffers from cancer. 

So, we have her work with a thoughtful therapist who specializes in the "well" child. We have joined a wonderful program, maybe the only one of its kind: Sibshop, wherein children who have ill siblings meet together in a guided program to share experiences, sympathy and FUN. We educate her teachers, her school. We found a teenage tutor to work with her on math (since she had no patience for parental support in that area--plus, she goes to her tutor's house--an added bonus, especially as she's much loved there.) And we load her up with the activites she wants to do and learn so that she's out of the house a lot, with one of her parents by her side.

This is one resilient girl.  She is full of love and empathy. Someday, she will shine. But it sure ain't the childhood we wished for her.

Wednesday
Jul112012

Guilt and Gilt $$$$$

Three years ago, I did not know about a parallel world to my own, where children are misdiagnosed, where moms are accused of being militant, Munchausen or maniacally mad. 

And many of you, if you're not one of those moms or dads, still reside only in one world. As you should. You'd never know from a quick look at my son that we straddle two worlds. If you were to meet him during the day when he's engrossed with friends, you'd see a handsome, happy, athletic boy with a winning smile doing a trick on his skateboard. Or whooping it up as he flies down the blow-up water slide.  The diseases don't show themselves readily.

What you don't see are the rages, the despair, the OCD, the long sleepless nights, the tics, the brain fog, the body aches, the frustration with life that leads to suicidal thoughts. Hence, doctors don't see it either at first.

And then there are those doctors who don't believe in PANDAS ("Oh, that's over-diagnosed," one said.)  Plus, there's a split in the Medical Lyme community over whether Lyme can be chronic or not, with the Infectious Disease doctors naysaying blood tests and urging spinal taps and the Lyme Literate doctors offering antibiotics in all shapes and colors.  (Note--I'm totally in support of the Lyme Literate doctors (LLMDs) and continue to bring my son to them, but the fact is, there is NO cure for Lyme yet.)

My iFriends are trying and advising everything else within their power. I have been advised to give my child: naturopathic supplements, Vitamin D and C, fish oil, curcumin, activated charcoal, epsom salt baths, lemon water, electromagnetic mats, low-dose IVIG, high-dose IVIG, frequent IVIG, not-so-frequent IVIG, homeopathy, melatonin, alka seltzer, gluten-free diets, GAPS diet, dairy-free diets, sugar-free diets, all of the above, none of the above. I have read about testing for black mold, parasites, heavy metals, the MTHFR gene....  (I'm sorry, but my mind goes to other places when I see the name of this gene. I'm reminded of my kids coming home from school or camp one day saying, "Shut the front door, you mother father.")

Parasites?  Worms coming out of a kid's eyes or butts? This really exists? YES, although I haven't seen it (yet?!) It's like entering a theater showing Freddy--the 13th. Setting: Amityville.  Main Characters: Every evil character you didn't believe existed. Hannibal Lecter, for one. (Note:I abhor horror films.)

So, then the question is:  what to do?  And what to do first? We haven't yet been to an integrative doctor but we have seen the homeopathic naturopathic doctor.  We've been to one LLMD and have an appointment with the widely respected Dr. Jones in a few weeks (had to wait about 6 months for this appointment.)  We've been to different PANDAS specialists, including Dr. T (Trifiletti) and Dr. B (Bouboulis.) And I like them both, although they differ somewhat in their handling of the disease.  We are transitioning into being gluten-free (the whole family.) 

I keep learning.  The steroids we used for the PANDAS, which was diagnosed first, would have exacerbated the Lyme Disese. But my son had not yet been diagnosed with Lyme.  Now I'm reading that if there are parasites or if my 90 year old house has black mold (I know there's some,) that we need to deal with that in order to deal with the Lyme, and we need to deal with the Lyme in order to deal with the PANDAS.  And so it goes.

A lot of this costs money, time, emotions, blood tests (my poor pin-pricked boy.) But can we stop searching for a cure? Each child responds differently and a treatment that works for one might not work for another young person. I promised my son he would get better. When I made that promise, I didn't realize that these diseases were the equivalent to some forms of cancer. I didn't yet know about the new worlds we'd be stepping into. But every day, I renew that promise. And this alternate shadow world we live in? Perhaps someone will begin to take notice.

 

 

Wednesday
Jul042012

Are These Kids "Normal"? Just Watch....

If you have just four minutes, watch "Dreams Come Alive." I promise you won't want to turn it off. In fact, you might watch it twice.  This was created by Marcel Cairo, one of the thousands of courageous parents who have a child with PANS. His artistic video shows the beauty of childhood, adventure, joy. But don't take my word for it. Just watch. 

The following is Marcel's description:  "A father takes his two kids on a breathtaking journey in a blue minivan looking to help heal his daughter who suffers from extreme germaphobia and a severe anxiety disorder. From Texas to New York, and living thousands and thousands of miles of adventure, a smile finally returns to her heart and her mind. Dreams come alive when you feel it inside."

If you were to meet my own oldest child, my son, you would have no idea, at first, that he suffers from PANS. He loves playing with friends, football, skateboarding, bicycling, roller-blading, ghost-hunting, Ozzie Osbourne, America's Got Talent, writing raps, and Shakespeare (really, Shakespeare!) And all he wants is to be a "regular" kid like his sister. It hurts my heart that friends no longer call him as once they did, how he struggles to maintain his social standing, academic standing, emotional stability.  In his own words: "This is a nightmare. I just want to wake up."

Yet, often when doing something fun, the real little boy within my son appears, like strands of sunlight in the midst of a bloated, rainy day. Despite the low frustration tolerance, the tic-ing, the silent counting of each step, the rage...my boy is still here with us. 

This short movie captures what it's like for that "regular kid" to shine despite a disease. Thank you, Marcel, from my family to yours.

 

 

Tuesday
Jul032012

Diving into Murky Waters

I am a mouse in a giant maze. I keep running 'round corners and I can't determine how to get out.  Where's the magic that will cure my son?  I can't let myself be trapped. I can't get trapped. I can't, I can't.

There must always be another option, another path to take.  What is the use of all this researching, all this suffering, if we are going to end without solving anything?  The Lyme doctor doesn't want to treat my son unless he's on more psychiatric medicine.  My son's therapist, who DOES take insurance, whom he adores, is too busy to see him and doesn't quite "get" the whole PANS thing anyway. 

We have appointments to see:

(1) a psychiatrist who actually understands PANDAS,
(2) another psychiatrist who is great with people suffering from Lyme Disease,
(3)  a social worker who counsels children who have Lyme, 
(4) a psychiatric nurse who will help my son deal with his OCD and tics via a cognitive process and
(5) a homeopathic doctor.

Just watch the cash register spin and jingle. Not a one takes insurance.

In the past, one after another, doctors told us that our case was "complicated."  Just what a dad and mom want to hear.  Even recently, the Lyme-Literate doctor used that language.

Sometimes antibiotics alone are enough to help a child with PANS. Often, IVIGs or plasmapheresis work wonders.  We saw small changes with the IVIGs, which is how our doctor determined that we needed to test again for Lyme Disease. Antibiotics did nothing but put my son over the edge and discolor his teeth.  

I'm allergic to most antibiotics.  Given that we've had my son on antibiotics for 10 months, with not much result except for more frequent rashes on his back, and then a huge flare-up of symptoms, they just might not be the right thing for him. I'm sure there's a genetic component there. After research, discussions, and much consideration, my husband and I decided to see the homeopathic doctor who has helped a number of these kids.

She was the first doctor to NOT tell me that our son's case is complicated.

But there's time yet for that.  

I gave him the first homeopathic remedy on Saturday. No change at all yet.  Meanwhile, our first appointment with the psychiatrist has come up.  I debate--do I go? The argument goes like this:

Angel on my shoulder:  Psych meds will not help the homeopathy, might even negate it.  Why would you botch it all up now?

Devil on my shoulder:  But the day-to-day crises demand that we make a rapid change. Calm him down. Do it now.  Or he might have to be hospitalized.

Angel:  You just spent all this time, money, emotion, hope on the homeopathic remedy. Give it a chance (repeat chance, like a mantra.)

Devil:  He's not sleeping through the night. Neither, therefore, are you.  You're exhausted, your daughter is distraught.  It's all a nightmare.

Angel: So many other people are seeing positive results with homoepathy.  As the doctor said, nothing is immediate.  It's more like a marathon.  You wanted to be able to plan ahead, like a bike race. Here's your chance (echo on "chance.")

Devil:  We were lucky enough to get in to see this amazing psychiatrist. He specializes in PANDAS.  You're going to throw that away? You can always go to talk to the MD and not fill the Rx right away.

Angel:  Sure, go to talk to the MD. It's only $800.  And you already spent money on the homeopathy.

Devil:  With nothing to show for it.  The hell with homeopathy!

Angel: But it hasn't yet been a week.  Have faith.  Commit yourself!

In the end, my Internet support group friends have come to my aid. They have been through the dilemmas, the waiting, and the horrible behaviors from children who suffer.  They advise me to give the homeopathic remedy time.  And I will.

Meanwhile, I hear calm voices upstairs. The two kids are playing together and not yet arguing. I've promised to take them rollerblading or skateboarding. It's a cheerful, yellow day that beckons.  I treasure the tranquility I feel now, having the living room to myself. I find my moments.

Friday
Jun292012

If Life Were a Bicycle Ride

Honeysuckle, butterfly-dancing day, warm, azure sky and my son is sick.  We bicycle out 6 ½ miles and I tell him to stop and eat. My tall, 11 year old boy, wearing his father’s old racing jersey and new bike shorts, pulls his bike up to the bench and tears open the wrapper of his nutty energy bar.  “I don’t think I can do anymore, today, Mom,” he says. 

“You really want to turn around now?” I ask, then correct myself.  “OK, let’s turn around. You know yourself.”

Last week we did 31 miles and he could have gone further.  Of course, the crash later would have been greater, but this kid is able to push himself.  He’s as fast as I am on short, steep hills, maybe even faster.  He’s got legs built for running and speed.  He's got the biking endurance of his dad.   And a sweet, huggy personality.  Sometimes.  Today he is whiny and frustrated easily.  He can't explain in words how he feels, though.

The doctor’s office said he might herx--get worse before getting better. One year ago, that was a foreign language to me.  My new vocabulary list for this year: Activated charcoal, Herxheimer reaction, basal ganglia, Lyme literate, immunoglobulin and strep titers.  Now my world continues to be topsy turvy. My family’s world. A world in which infectious disease doctors are to be avoided because they don’t know enough.  Too many doctors don't believe in long-term, or chronic Lyme.  Too many doctors don't believe in or know anything about PANS and PANDAS.  What?  A strep infection causing tics and OCD?  Never heard of it. They'd rather perceive my son as mentally ill and prescribe drugs that could exacerbate his actual condition.

My son is tired.  The culprit?  This brilliant yellow, viscous fluid that is used for malaria of all things.  And babesia, a tick-borne disease that can be contacted along with Lyme, but doesn't alwasy show up on blood tests.  And although we won't subject our son to a spinal tap, which was suggested by one doctor (and negated by another doctor, who said that the spinal tap doesn't always show Lyme,) we are subjecting him to this medicine, twice a day, followed by a tiny chocolate chaser.  And he takes it, using a spoon to scrape the noxious fluid from the cup so that he gets the medicine he might need.  

I drop him back home.  We’ve biked over 13 miles.  Not enough for me.  I’ve caught the biking bug and the outdoors are too blue and sunny to waste.  .

I go back to the parking lot, unload the bike, pull on my biking shoes, re-set the bike computer.  I plan to ride another 13 miles.  6 ½ miles out and 6 1/2 miles back.  Then, I’ll feel like I earned my day.  Plus I need to train.  I intend to do a century, a 100 mile bike ride, in August, as a resistance to my next birthday.  Oh, I’m turning another decade and it will happen.  I’m not going out young. But the word fifty is just another F word to me. 

I’m tired.  Sluggish.  I ponder if maybe I also have Lyme? No. Tests were all negative and I show none of the symptoms. Is it because I had mono when I was 20?  Are my iron levels low?   Or is it sadness over the shape of my family? Well, duh.  It’s been over 2 ½ years that we’ve been living through crises after crises while our boy suffers brain fog, tics, intrusive thoughts, rage and suicidal depression.  

Through my own brain mist I realize my gears are too high.  I’d been trying to get some extra exercise while riding earlier with the little guy, who was pedalling slowly, but now the gears are hard to turn.  I shift down and all becomes more fluid.  A red-wing blackbird flitters across the path.

I reach 6 ½ miles, stop for my own healthy granola bar (lunch.)  No, I’m not ready to turn around.  I’ll go out one more mile which means a total of 15 miles, plus the almost 14 from earlier.

At 7 ½ miles I feel good.  It's that wonderful green-leaf, striped-chipmunks scuttling about the bike path, isn’t-this-world-great kinda feeling.  Fine.  I’ll go out for 10 miles altogether and then turn back.  Make it a total of 20 miles

I'm tired at the ten mile mark. Bicycling and contemplating have caught up. I stop for an energy gel.  Chocolate.  And think about my 9 year old daughter smiling and saying, “What do ladies really like?  Chocolate!”  The gel has been in the bottom of my bike bag for a long time.  It expired last summer.  Oh well.  The package says it's good for about 45 minutes and much of the ride back is downhill.  I have 45 minutes to get back, I tell myself.

Somewhere along the ride, I feel a presence to my left.  I see a flash of white as a man in a tight white sleeveless undershirt and black biking shorts pedals up beside me.  I am stopping at the intersection but he buzzes by without checking for cars. He pedals as fast as he can, glancing behind him as I gain more ground.  I pass him, calling out, "On your left."  

I don't see him again until the next intersection.  I'm a mom and I have babies at home, 9 and 11.  I have to stop for cars. I have to wear a helmet. But this man doesn't play by those rules.  Again, I slow down and he doesn't. He whizzes through, pedaling fast and glancing behind several times. I pass him again. And this goes on. Until finally, when I pass him, I hear a sigh. I totally lose him on the up hill and think that maybe he finished his ride. But no. I'm back at the car for a good five minutes when he comes pedaling past. Ha!!! My husband will be proud!

And he was younger than I am, too.  

I'm not particularly fast.  And not stronger than the next bicyclist.  I'll never win a bicycling race.  But sometimes, it's fun to feel that sense of winning. Especially when we've been losing in our battle to cure my son of PANDAS and now Lyme.  

If the road to curing my son were like a bicycle path, I could see the impending hills and plan. I'd have relief on the down hills, and either experience the joy and excitement of life, or coast for a while. I could shift gears and have a little control.

My husband and I have no control over our son's disease.  We can't fix him.  The doctors have not yet been able to fix him. Our baby is not the only one like this.  There are countless children with PANS, PITANDS, PANDAS and they are all suffering in different ways. 

 

 

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