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

Thursday
Nov012012

XBox and Integrative Medicine

My son is sad--truly distraught--because we don't own an XBox Live.

"You don't understand, Mom. A Wii is boring. I NEED an XBox. I want one so badly. Everyone else has one. And it has to be LIVE so I can play with my friends. You don't understand. I think about this ALL the time!"

Tears. Oh, they melt my heart. But not enought to buy him an XBox. Sorry, XBox Live.

Normal kid stuff? Shake in a whole lotta OCD. Add a couple of tics. It's the PANS-kid cocktail. And once it becomes an intrusive thought, we're way past the my-kid-wants-a-new-toy-thing.

When he first got sick, THREE YEARS AGO, it was all about owning an iPod. "I HAVE to have it. It will make everything better." My husband gave in and let him use his old one. Voila! For five days, having this iPod DID make everything better.

And then, it didn't. 

Back to reality. "Well, if you save up your Chanukah money," I tell him, "and add it to your birthday money, you'll be able to buy one in a few months."

Nah-ah. Instant gratification is desired. And killing aliens on the computer is fun.

I can't blame him. Part of his life absolutely stinks. Why not go for fun? If he's not playing with friends, he is miserable. Fatigued, depressed, with joint pain and oncoming rages that he's trying to suppress. We are LUCKY that he can sustain friendships and lose himself in play.

But for how much longer? At home, that control is starting to slip, as he begins to use his weight and strength. He's not getting any younger. Puberty awaits.

I am very much aware that antibiotics alone are not saving my son. I have a zillion questions to ask at the next doctor appointment. I'm grasping, thinking, planning. What can I possibly do? I cannot believe that we will be unable to heal my son, unable to climb out of this PANS pit.

OK. I admit it. I'm desperate.

What has worked? IVIGs perhaps, for a period of time. But only until the next virus comes along. Or the next herx from treating the Lyme. Will he need IVIGs for the rest of his life? Plasma infusions come with their own risks.

A few days ago, I spoke with a VKP (Very Knowledgeable Parent) who has been attending conferences whereby she is learning that we need to heal the gut as well as the brain. The gut is crucial to our health--in fact, it has over a hundred million neurons and is referred to as "the second brain." Very cool! 

Of course, I give my son probiotics. Also, I have the GAPS book but haven't attemped even to crack it open (after my failed exploration into the world of gluten-free this summer.) I have read the summary of the diet, though. So, I bought kefir--which he won't drink--and I just bought saurkraut. My husband and I like kimchi. I made beef broth. But there is no way that I can get my son to stop eating carbs, and white bread and rice at that.

This is my plot: introduce a little "healthy" food at a time. Or make saurkraut/kefir smoothies and force them down his throat. Joke! Really!

I honestly tried to get the Halloween candy out of the house. "Hey, you two," I said to my kids. "I'll give you $10 each for most of your Halloween candy! You get to keep 5 or even 10 pieces. What do you say? I want to donate it."

"Really, Mom?" sneered my son. "$10? No way. I worked hard for this candy. We went all over the neighborhood."

"Yeah, Mom," added my daughter. "I live for this candy!"

OK. So, I'll just have to EAT the candy myself. Ugh. And I'm not even bike-riding lately.

Not that my little guy will even eat a lot of it. He's incredibly picky with his food now. I can't get much into him. Egg whites, creamy, but he won't touch the yolk. Oh, and he's suddenly into cole slaw. He will eat turkey legs, duck and lamb. No fruit or vegetables. Unless the broccoli is in Chinese food from the Chinese restaurant. He likes pizza if it's from a restaurant. 

He liked my roasted pumpkin seeds today--yay! And they're good for him, too! Double yay!

So, our next step, I have decided, is to see a doctor who can look at the entire picture, a doctor who can communicate with our current team of professionals, a doctor who will have alternative ideas, a doctor who can leap tall buildings in a single bound. Yes, she exists! For she is an integrative doctor.

Oh, and a lot of integrative doctors don't take insurance. Maybe I need to hold onto that $20 I would have spent on their Halloween candy.  I'm gonna need it.

Sunday
Oct282012

Muck and Mire

Hope is the thing with feathers...
that flies south in the winter
South, way past where the hurricanes begin
South of Hurricane Sandy, south of Miami, into the deep beyond. 

I just butchered Emily's words, but then I feel battered myself and feel like blasting someone other than myself. When will this ordeal ever end? I vow that I'll keep on fighting for the cause--for these children with orphan diseases, for adults who suffer from Lyme. But I want to be able to inspire people because my son got better, darnit. Not because I'm living in the midst of the nightmare, still. Going on 3 years now.

Last night, I spoke with a family member who just had surgery and is having a hard time being laid up for a few weeks. He's feeling his age, and although he did 80 push-ups shortly before the surgery, is having a hard time feeling infirm. He's almost 80 and this is his first bout of something semi-serious. He doesn't like being incapacitated, he detests not being strong and he's nervous about recovery. It's an evil thing to see himself weakened.

Oh heck, I'm the same way. When I was in my 20s and running ("no pain, no gain,") and I finally went to a chiropractor for the pain, I found out I had scoliosis. My first reflection was that I had some invisible deformity. I wasn't perfect. Not that I ever felt perfect. But this made me more imperfect in my own eyes. Muck and mire. I was bogged down by my own self-image.

I don't run anymore. I bicycle. And I haven't biked since that wonderful 52-mile ride I did in August, right after my son's IVIG, right before school began for me. The week is filled up with work and kids. When Saturday rolls around, I'm wiped out--physically and emotionally. Sunday is another workday, with all the sports and religious education. I'm a driver. A cheerleader. A playdate organizer. A laundry worker. A therapist. A cook, sometimes. In other words, a mom. Boy, do I need the exercise. I need the fresh air stripping my mind of the worries that awaken me in the early hours of morning. 

Our son is not doing well. His Lyme is neurological and I won't even list all his symptoms here for fear of embarrassing him in the future when he is better. He has missed many days of school and we are very close to requesting a tutor. The problem with that is that he would require a babysitter as well, so that my husband can work. We need to find out if there are alternative programs around here--the middle school works for healthy children, not for a boy who is suffering as much as my son is. And suffering silently. He doesn't let on when he's feeling low. He'll push himself to run around with friends although his joints hurt. He will pretend to understand what is said in class when his mind has shut down because of the brain fog. But when he gets home, where it's safe to unleash the frustration, the anger, the pent-up rage that overcomes him throughout the day....

I spent Saturday cleaning up. He trashed the upstairs but doesn't remember doing it. And with his arm still healing (cast off, 75% healed, brace and physical therapy for another 4 weeks,) and his body hurting when he bends over, it's just easier to bargain. I'll clean while he takes an epsom salt bath. (And scrub that dirty, old skin off the arm where the cast was.) 

On Friday night, I spoke with a veteran PANDAS parent. I didn't know that anyone could help me. I have read so much, understand so much more. I still don't get many concepts--I have to now become knowledgeable about methylation issues and pyroluria, two concepts people are writing about on the PANDAS and Lyme threads. I'd worked all week, slept little, was feeling stuck in the bog of not getting anywhere. The doctors we see are some of the best in the country but they have thousands of patients and are difficult to reach (having said that, I was able to reach them, and have been in touch with them.) Why the heck isn't my son getting better? Why does it seem he just gets worse?

The parent I spoke with Friday night helped me to see that my son DID improve after each of the three IVIGs he had. The first time, it took 9 criminally horrible weeks (he was suicidal.) After 9 weeks, a kid emerged from the ashes...a kid we hadn't seen in a very long time. It lasted a few weeks, until the next IVIG. The 2nd IVIG cleared up some of the PANDAS symtpoms that were debilitating, but brought back others. Plus, we changed antibiotics and started treating for Lyme. It's hard to do this scientifically. It would take years if we isolated every single variable (plus we'd need a bubble. Couldn't let him out of the house. But perhaps there's mold in the house...the things we worry about.)

The third IVIG, once we got through the migraines and vomiting, did wonders for the OCD. But we started treating the Lyme with antibiotics again and soon, everything was downhill. Now we're heading into our 4th round and perhaps we need to increase the frequency of the IVIG.

There is a debate going on here. Some doctors insist that IVIGs (high-dose) should not be given any less than 12 weeks apart. I've been abiding by this. Other doctors think that some of these kids need more frequent IVIGs. Some kids are going for very frequent but low-dose IVIGs. What to do? Whom to trust? No one really knows!

Yet one thing is for certain: in all this mess, the one thing that has made a difference is the IVIG. So, onward we go. A Tarzan vine hangs above the bog. My feet are pulled down into the quick-sandy bottom, my head is just above water, but I can lift my arms out and grab hold of that vine and hang on for dear life. 

My kids cling to my shoulders as, hand over hand, I drag myself from the muck and the mire.

We will get there. Reality tells me that my son may never again be the perfect little boy he once was, that he might always have to manage these diseases one way or another. But thanks to more publicity, awareness, research, cures will be found. 

If only we didn't have to experiment on my little guy.

Thank you to Tiffani, for patiently pulling me out of the bog this time.

 

Saturday
Oct272012

PANDAS MAKES THE NEWS!

For the Boston Globe article, click here.

Please help let the world know about PANS and PANDAS--share these articles. We need help for our children and to get this, we need more research into these orphan diseases. 

Thursday
Oct182012

Hope

Where is it? Hope eludes me as cleverly as the cure does.

Why must it be so horrendous, this trying-out of medicines, this waiting-for-something-to-improve?

Why my boy?

My [healthy] daughter has such zest for life. She always had so much confidence, curiousity, character. Now she crumbles, although I do believe she's gained new strengths. She is the younger one who acts as the older one.

He raged today, my sonny. I held him. Tight, so his arms wouldn't hit me or throw things across the room. I told him how much I love him, that I'm sorry he's hurting, that we'll keep him safe. I wanted to sing to him but I couldn't find a tune my voice could handle. Summertime just doesn't work anymore. "But until that morning...there's a'nothing can harm you...."

B.S. 

Anything sets him off now. Any pressure from school. His sister crying. A small argument.

I fear people walking by our house will hear his screams, his yells of, "I'll kill somebody!" and call the police. I fear my baby being taken to a hospital and given psychiatric medication that can make him worse. I fear doctors scorning me because they don't believe in chronic Lyme. I fear my son being another Elizabeth Wray. 

I fear for Elizabeth Wray. This WAITING with no information is agonizing. She is everyone's child now. She is my son, your daughter, his child.

My children were and are my dreams.

What's wrong with him? Is it a herx? A PANS flare? Why can't doctors figure out how to help him? Why are we running out of money seeking cures for him? Why can't I have more time to visit doctors and hunt down alternative cures? Would it make a difference? Am I perhaps lucky that I have a good job that I enjoy, that I can for a few minutes forget my own pain and enjoy teaching someone's else's children?

Doctor's offices are preparing letters for my son's school. His school has never before had to deal with a child with neuroborreliosis. They don't know how to accommodate him and need doctor letters before making changes. So, until then, must we keep him home? He's too sick to even advocate for himself when he goes to school. We are lucky that he can still enjoy friends, football games, little bits of life. In small doses. The things for which I am now grateful.

If we can't keep him in school, we'll have to homebound and that presents a whole different set of problems. 

Hospitals. Money. School. Rages upon rages upon rages. My little girl crying. My little boy saying this has gone on for most of his life now. My husband sharing my stress. 

Breathe.

The fresh air was cleansing today, the air that swept through the car windows on the way home. My mind wanted to fly away on it. There's this one hill that I occasionally drive down. From the top, I can see a good span of Hudson River. I want to take off from that hill and glide over the river. Sans car. Just soar like one of the eagles that come down from the north mid-winter.

I thought that maybe I'd take out my guitar, lose myself to my music, the singing. I thought I would stop by the supermarket--anything to not go straight home--and buy food to make quiche. I googled the recipe while I was grocery shopping, filled my cart with eggs, cheese, vegetables.

But the raging took precedence.

I held him tight, the words, "I love you" my mantra. When it was over, I felt his body relax into mine, and he said, "I just woke up. Was I raging? I feel like I was but I don't remember anything."

I will remember. For all of us. I will remember.

Sunday
Oct142012

Boston-bound for Elizabeth

I know many people who've heard about Elizabeth Wray are holding off making a judgement about Boston Children's Hospital, thinking that if the hospital took her away from her parents, that they must have a valid reason.

Most people believe that a large, top-rated institution would never make such an erroneous decision.

There must be more to the story than suggested. 

Yes, there is.

On Saturday, my son and I drove from NY to Boston to join the rally for PANDAS and for Elizabeth Wray. We gathered with other supporters on the sidewalk across the street from Boston Children's Hospital. We met "Grandpa" Jeff as well as parents and children who have or had PANDAS and Lyme. We handed out information about PANDAS as well as information about Elizabeth Wray's sad journey in an effort to educate families and medical professionals. 

From personal experience, I've learned that most medical professionals know nothing about PANDAS or PANS and those who know a little are just as "dangerous" because after giving one week of antibiotics without results, they think that PANDAS is not the problem. So, perhaps we educated more medical professionals: those employed by Boston Children's Hospital. 

But why, oh why, would BCH not believe in PANDAS????? This child has PANS and Lyme Disease. Antibiotics, gluten-free and casein-free diets are typical treatments. Why would BCH remove her from the treatment which had, until recently, been working?

Well, for one, the U.S. government hasn't updated its definition of Lyme Disease for years now;  it still maintains that Lyme is expelled from the system with a thirty day dose of antibiotics. The CDC refers people to the 2006 Guidelines for treatment as developed by the Infectious Diseases Society of America. And the IDSA doesn't support chronic Lyme. If long-term antibiotic use is not sanctioned for Lyme, then why would it be sanctioned for PANDAS? 

Yes, there are Dr. Swedo's studies, and more...friends of mine are much more adept at citing studies (see PANDAS Resource Network for these links.) Yes, PANDAS is recognized by the National Institute of Health. But in reality, few hospitals recognize PANDAS. Sure, it exists, they say, but it's overdiagnosed, they also state. 

Which is perhaps what BCH is saying? They certainly don't want to support the diagnoses made by her previous doctors, doctors who are well-respected in our small PANS community. For some reason, BCH wants to treat Elizabeth's problems as psychiatric. They would have put her in a psychiatric ward were it not for the judge. But this same judge took custody away from Elizabeth's parents who were seeking help for her. Are you telling me that the hospital called CPS because the parents would not consent to the psychotropic medications? Really? Have we, as parents, lost all our rights?

The Wray's case is not a stand-alone incident. However, thanks to her family wanting to go public with this trauma, some of us know about it. There have been blogs about this. One newspaper article. And nothing more. Why hasn't the media picked up this news? Are they afraid of going against the #1 rated children's hospital in the country? Is studying the science behind PANDAS too difficult? I admit, I have to read scientific documents many times. Now I know how antibodies attack the basal ganglia. And how spirochetes can even hide within yeast cells. How activated charcoal is given to bind the toxins in the body. But once, all this was a foreign language to me. As it must be for many a journalist.

No, it's not a stand-alone case. Each week, I read about parents taking their child to different doctors, different hospitals, even those that now call themselves, "PANDAS clinics," only to be told they need psychiatric meds, or to overhear doctors saying they don't really believe in PANDAS. I have met wonderful doctors who tell me that they don't believe in chronic Lyme. There must be something else wrong with our children. And parents are threatened with CPS constantly--by schools, by doctors, by hospitals--for not complying with medication. Just today, I spoke with a fantastic mom who is in the psychiatric healthcare field who was threatened with CPS when she refused to give her son some medication (not a PANDAS child--this is happening all over.)

Either way, Elizabeth is NOT being treated as if she has PANDAS OCD-induced anorexia. From what I gathered from Grandpa Jeff, Elizabeth is no longer walking. Her parents sit with her 24 hours a day in an effort to keep more of Elizabeth's daily functions from being lost to the OCD which the hospital is not treating properly. And her parents are sensitive to the intense separation anxiety suffered by our children who have PANDAS.

Gee. My child can't even fall asleep unless I'm by his side. And we once thought about taking him to BCH, long before we figured out he has PANS and Lyme. What might they have done to him?

The hospital decided that Elizabeth doesn't need to be on the gluten-free, casein-free diet her PANS and Lyme doctors suggested. They decided that she need not drink rice milk anymore and instead gave her regular milk; now, she won't drink either. It seems as though the staff is treating her not-walking as a behavioral issue. Or psychiatric. Take your pick. 

PANS and food. Texture, smell, taste, sound--it all comes in to play. My son cannot bear the scrape of a fork against a plate. He will only use plastic utensils. You make him eat with metal and he just won't eat. You try to make him eat a food that he no longer likes and he will leave the table. Half the time, he can't even sit at the table anyway. When I give him his melaton at night, he has to ask if it's "mint." Every darn time. If there are three separate pills, the question is, "Mint? Mint? Mint." G-d forbid I say "cauliflower."

OCD. What can I tell you? It's a different world, but this is not a world of mental disease. For some reason, doctors have gotten so far from treating for medical diseases. It's like they want to treat the medical disease as a psychiatric one. Throw some psychotropic drugs at the child. Unfortunately, these same drugs can result in a chlld with PANDAS or PANS becoming worse.

Doctors who are courageous enough to treat Lyme Disease and PANDAS have been harassed, investigated, and charged with mistreatment. By whom? Not by patients, but by other doctors, the Departments of Health, or in Dr. Jones' case, an angered ex-husband of a woman who brought her children to him.  Parents have been accused of everything from Munchausen's by proxy to sexual abuse. I guess our family got off lucky when we were accused of perhaps being too close.

Doctors who are tenacious enought to treat Lyme Disease and PANS must be creative. Every child is different. There is no one cure. We believe my son might have bartonella and babesia, tick-borne diseases, in addition to Lyme and PANS. We can't tell. His immune system is ruined by the Lyme and he doesn't test positive for too many diseases. We were lucky that he had the positive Lyme test (but not by CDC standards which claim you need many more strands.) We are lucky to find doctors willing to work with a boy who is not going to heal with a snap of the fingers.

Elizabeth Wray was lucky also. According to her grandfather, she plays guitar and at least one other instrument, rides a horse, is artistic. She's a bright-eyed, beautiful girl. When she got sick, her parents found the right doctors. She certainly has the best family a girl in her position could ask for. She would have been lucky if she had gone straight to Mass General, where Dr. Jenike and Dr. Geller could treat her. But this time, her luck ran out. 

Grandpa Jeff believes that if this ordeal changes the way all children with PANS and Lyme are treated, then there is something to be gained from it. 

My son talked about breaking in to Elizabeth's hospital room through the window and saving her, Spiderman-style. 

We cannot lose our momentum. The case goes before the judge again on October 23. Sign those petitions, contact the congresspeople and the news, get word out that an atrocity is happening. Save this child.

Want to follow the news? Like the Free Elizabeth FB site. For the petition, click here.

For a video from the Oct. 13 rally, see PANSlife on FB