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

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Monday
Jul162012

"Sweet dreams are made of this...."

News flash: 11 year old boy suffering from both Lyme Disease and PANDAS, accompanied by his parents, bicycles 100 miles in one day! 

Well, this was the idea back in May of this year. To promote awareness of PANDAS and Lyme, we would wear t-shirts designed by my artist husband. But my husband has been busy (working!) and hasn't completed the design yet.  Plus, he was doubtful of our ability to actually get out and train when our son is home and not well.

August 26 is looming and I'm in no way ready to ride 100 miles in one sitting. I've been riding a few times a week, 20-30 miles at a pop when riding solo. I've conquered some hills, ridden for speed.  I could easily crank out 50 miles.  But 100?

With his little sister at daycamp this summer, my son is hovering around the line of boredom.  We rejoiced when 10 days into the homeopathic treatments, he actually picked up a book again. And did a little math--hooray! That lasted a total of 2-1/2 days. But while he's occasionally played with neighborhood boys, he's also just hung out at home. I understand. Recovery is priority and he's not feeling very chipper. The result of this is that my summer is being chewed up with childcare, laundry, driving to camp, laundry, organizing my daughter's room and doctor appointments. And a little bit of bicycle riding.

So, my husband and I decided to carve out the days needed to train, get a babysitter to keep the little guy safe, and go for our goal. We had a great hilly ride last week which aroused a lot of tween jealousy. That night, he and my husband and a couple of friends drove to Pennsylvania to see competitive track racing (bicycling without brakes.) My husband had long ago raced on the same track. The bicycling bug was back.

Two days later, on a Sunday morning, my 11 year old and I traveled off the paved path and onto open, treacherous roads. Cars careened past as we cycled over rugged, gravelly roadsides and one challenging hill. He LOVED it. Said it was his best ride EVER. But at about 12 miles, with 2 more to go, he told me he was feeling unbalanced. I've seen him unbalanced before. It's a PANS thing. When I didn't know better, I thought he was faking it just to get attention, as he reached out for furniture and walls like a bad actor pretending to be a drunken sailor.

This is a kid who at the age of 7, rode 20 miles with his dad. Over a month ago, he rode 36 miles with his father and me. And beat me up the hills. But a few weeks ago, he struggled with 2 miles, eventually pushing himself to ride a total of 9 miles that day, despite pain in every joint in his fingers, arms and legs. Mornings are not kind to children with chronic LD.

Just as the phone is a magnet for getting a child's attention, now that we have these wonderful rides set up (and alone time with my husband,) guess who wants to join us? Guess who has since been pushing himself to pedal around the hilly neighborhood, not just once, but nine times, fast? And arguing that his body does not hurt when he rides? He's even preparing his own water bottle.

Decision time. Do we let him push himself, knowing all the while that his condition includes encephalitis? A few weeks ago, pre-homeopathy, he was having meltdowns the night and day following a long bike ride. One of our doctors recommended Ibuprofen, which is a PANDAS standby for many kids, to help with the inflammation. I dosed him before and after the ride and it made a difference. But now that we're doing homeopathy, we are avoiding the Advils and Motrins which suppress the immune system.

Dreams get delayed and there's always the possibility, for a zillion "normal" reasons (never mind the fact that we have a sick child) that we will not be able to ride the century this August. Alright, we do 50 miles. Or 75. There could be a hurricane that day and we accomplish no miles at all. Today is brilliantly sunny and we're bicycling with our son. For a little while, if his little body holds up, we can all forget that he has a disease and just have fun. 

 

 

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.