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

Sunday
Oct072012

SCARED

I'm feeling very angry and frightened by everything that's happening in the outside world.

I'm greviously upset by what Boston Children's Hospital is doing to Elizabeth Wray. If you haven't been following, her parents took her to BCH from NY, where she'd been diagnosed by two different doctors with PANS and Lyme. They needed help because she has PANDAS-induced anorexia.

If you're read my blogs, you'd know that we tried to go gluten-free here for my son. But he pretty much stopped eating. So, we're not gluten-free. And we're not sugar-free. Not the healthiest diet for a kid with Lyme and PANS. But I've watched pounds slip off of him. And I've heard how his tastebuds don't work anymore and I've seen him rage when he's too hungry.

Just as any good parents might do, the Wrays brought their daughter to BCH. Hospital officials said that they don't believe in PANDAS, called Child Protective Services, took custody of the child away from the parents, then removed the child from the antibiotics she's been on (as well as the gluten-free diet) They have force-fed her, held her in a hospital bed, screaming. And they won't transfer her to a hospital that does believe in PANDAS. 

OMG. This could have been my child. We could have mistakenly gone to BCH. We haven't gone to a hospital since learning that our son has PANS. I'm afraid of hospitals now. If we did, the only one I can think of is Mass General (perhaps the only hospital in the entire country that does believe in PANDAS; they're building a PANDAS clinic.) Ironically, both Mass General and Boston Children's Hospital areaffiliated with Harvard University. But they have very differing views about PANDAS. Check out Harvard Medical School pyschiatrist, Dr. Michael Jenike, as he speaks about PANDAS: 

 

The world is not ready to hear about PANDAS. Gads, if it were cancer, people would be knocking down my door to lend support. But not an invisible disease that affects behavior. People knock down the door to head in the other direction. Most of the world doesn't understand what we PANS parents endure--and has no wish to.

One year ago, we were distraught. The psychiatric drugs that had been given to my son weren't working. Our doctors had no idea of what was wrong. And then, someone came to our aid. A wonderful PANDAS doctor saw us the day after I contacted him (and I left a message on a Sunday;) he got us in immediately after hearing that my son had been previously and erroneously hospitalized. Now this doctor, as well as others, is being harassed by governmental and medical forces that want to believe that PANDAS doesn't exist.

Just listen to the 1000s of parents across the world. Some children with PANDAS have been cured--with a lot of antibiotics, with tonsilectomies, with IVIGs. Other children are still waiting to be cured. My son is in the latter group.

We can't lose more brave doctors. I've been scared for a long time, wondering if my son will ever get better, worrying about the effect on my daughter, pondering why life must be so hurtful.

I need to continue to concentrate on turning my negative energy into achieving something for all PANDAS kids. I mean, really! What is the purpose of life if this is all there is--pain, stress and torment. I'm by nature an optimist. But sometimes I sure have to work hard to believe there's more than this.

It all makes me think of two historical events that happened before my time: The Salem Witch Trial and the McCarthy Era. There is a witchhunt going on for professionals who believe in and treat chronic Lyme and PANDAS, PITANDS and PANS. If this witchhunt succeeds, what will happen to my child? 

I'll tell you. He will not be alive. I need these doctors to save his life. Please. Take a stand today.

Wednesday
Oct032012

Boston Children's Hospital Pulls the Rug Out from PANDAS Parents

"Do not take a child with PANDAS to Boston Children's Hospital," writes Beth Maloney, PANDAS activist, attorney and author of Saving Sammy, The Boy Who Caught OCD.

"I am working with a family whose PANDAS child was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child's antibiotics, reported the parentsto Mass child protective services, and had the parents trailed by guards at the hospital. In both cases, BCH has actively encouraged children's services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit. I will be in court tomorrow in Boston fighting Mass CPS on behalf of the current family who is trying to retain custody of their child.

"FIND A DIFFERENT HOSPITAL."

--------

OMG! I cannot even begin to describe the grief that I feel for this family.

And it merges with the grief I feel for my own family. Life at home, right now, is dreadful. My son is herxing like crazy and that's not an exaggeration. We need to make it through the herx, to the other side. Herxing means the antibiotics are working on the Lyme. We have been decreasing the amount of antibiotics because this little kid doesn't want to live like this anymore. He doesn't want to live.

His younger sister told me that she doesn't want to argue with him in case he's not alive one day. Stab me in the heart. (But then she goes on to argue with him anyway, so maybe she has more faith, or just not much patience. I opt for the latter.)

Heavy stuff for an 11 year old and for his 9 year old sister, who's been sobbing and hyperventilating. And for my husband. And for me. 

The dog is still wagging his tail and dumping toys in our laps.

So, what do I do, take my son to a hospital? Sure thing, the one down the street believes in PANDAS and chronic Lyme. NOT! Westchester Medical Center? Just the opposite. I won't even go into all the details here and now, because I'm wiped out but WMC is under the governorship of infectious disease doctors who tried to create a Lyme vaccine and have sat on research showing that Lyme DOES in fact travel from a pregnant woman to her unborn fetus while claiming that this cannot happen. Look it up--it's all there on the internet. And of course, we had brought my son there in the beginning and did they ever test for PANDAS? No. In fact, they sent us on to a psychiatric hospital.

Hello, people! PANDAS is a medical disease, not a psychiatric one!

So, if I take my son to Boston Chidren's Hospital or a dozen others around the country, chances are that they will take him off antibiotics, call CPS and take my child away from me, maybe put him on psychiatric meds that will exacerbate his PANDAS symptoms. This is a nightmare. 

When he broke his arm, I told the ER nurse (at a different hospital) that he had Lyme and PANDAS. I was lucky, because her husband has chronic Lyme so we immediately had an understanding. But what if she were one of these nonbelievers who would report me for giving him medication for a disease that she said didn't exist? And I told her he has PANS and was able to educate her about PANS. No, she'd never heard of it before. What? How can that be? Shouldn't our ER people all be taught about diseases that are recognized by NIH?

We have been to three top doctors who diagnosed my son with PANS and/or PANDAS. But that might not matter if we stumble into the wrong hospital with the wrong doctors. As it was, my baby was misdiagnosed for a long time.

And now, he's anguishing. He screamed out, "HELP! I just want to be CURED!" But what if some neighbor heard the cry for help and called the police when my son is in this state? What if they wanted to take him away and out of desperation, he fought them? It's happened before to PANDAS kids. And separation anxiety is a hallmark of PANDAS. Tics. OCD. Intrusive thoughts. Nightmares. Depression. Oh, what a fun, lovely disease.

He will be better one day. A friend told me that herxing like this is like (her words) "free falling" on a roller coaster, trusting that we will come up on the other side. Actually, she said it much more eloquently than I just summarized. But I'm operating on 3 hours of sleep and a ton of anguish.

Just remember this: no one takes my son away from me.

Or, do I really have the power to say that? 

What can you do? What I did. Write to Boston Children's Hospital and let them hear your outrage. Just email your letter to public.affairs@childrens.harvard.edu .

---------

Addendum: This just in from Beth Maloney:  

"Below is the list of the names I was given by the State of those at BCH who spoke with Child Protective Services about having the State of Massachusetts take custody of Elizabeth away from her parents.  I have provided as much contact information as possible.  Call them.  Email them.  Make them understand that there are thousands of parents standing behind the Wrays.  You may want to begin by sending to this email which is a general for the hospital but I want you to do more  http://childrenshospital.org/email.cfm?s=1394&c=7&u=webteam 
 
I want you to call the hospital and ask for these people.  I want you to leave voicemails if you don't reach them.  They need to know that this movement is only going to grow.  Will you do that for us?  The general number at the hospital is  617-355-6000.  I want the switchboard jammed.  Begin every call with “I’m calling about Elizabeth Wray.  Please connect me to ...”  I want your voices to be so strong and so many that - maybe - then they’ll begin to get it.  I want them to know that parents are not longer going to bring their children to BCH.  And I want them to know that they cannot hide behind the cloak of the State.
 
As far as emails, from the few that I know it appears that the pattern is first.last@childrens.harvard.edu   
 
Here are the specific people I was told that the State spoke with: 
Dr. Othman Mohammad
Dr. Simona Bigourno
Dr. Gary Gosselin gary.gosselin@childrens.harvard.edu fax 617-730-0917
Dr. Lydia Shrier   617-355-7181
Elizabeth Holleran, child abuse social worker
Deb Sorentino, child protection team
Ellen Rothstein, Esq.  Associate General Counsel      Ellen.Rothstein@childrens.harvard.edu
 
Others to contact would be:
James Mandell, Chief Executive Officer
Sandra Fenwick, President & Chief Operating Officer
Stuart Novick, General Counsel    617-355-4937   Stuart.Novick@childrens.harvard.edu
 
This is a link to the entire leadership team  http://www.childrenshospital.org/about/Site1394/mainpageS1394P4.html
 
Many of you have asked if you can help with a donation.  Jay wants to be clear that he is, "not the type to ask for money," but if you want to help he will gratefully accept.  He is the family breadwinner and is presently on medical leave from his job where he has worked for the same employer in customer service for fifteen years.  His family home is more than five hours from Boston.  His family has living expenses in Boston, a huge liability for all the "co-pays" that will be charged for hospital stay, legal fees, expenses at home to manage, and no end in sight.  He asks that checks be made to “Beth Maloney Esq. Trust Account” and indicate "for Elizabeth Wray" on the check.  The mailing address is Beth Maloney, Esq., P.O. Box 468, Kennebunkport, ME 04046"
Sunday
Sep302012

Night and Day

It's 9:00 at night. Are your kids clearing their throats and trying not to rage?

We've taken all precautions, as usual. And as usual, nothing is working. Although, I have to admit, I've seen and heard worse. So, here goes another night in our house. My mind plays over all the pills we pushed into my kid today. Antibiotics and more. Plus:

Activated charcoal. Yep. Apart from other meds.

Curcumin. Gotcha.
Lemonade from scratch with Stevia in place of sugar. Check.

Kapvay. Righto. Altho it's not helping with the tics. (And certainly not with the ticks.)
Melatonin. The max allowed.
Benadryl. Oh yea.

So, how come he's still awake?????????????

Every night is like this. It's like the picture of The Scream. Poor child.

Today began well. Many mornings are ok, lately. And for that, I'm grateful like anything. 

Yesterday, we went apple picking and my daughter won a donut speed-eating contest  and we came home with an extra box of cider donuts! Yes, an extra box. Because I'd just purchased a dozen of them. I really thought she'd lose; she's always the last one finished with any meal. But she followed directions: chew, swallow, take another bite...and the skinny mini was a winner!

So, thanks to our wonderful day yesterday, we have apples--yay! Great tomatoes! Wahoo! A huge pumpkin and pumpkin pie and carving plans--super! And lots of cider donuts--ummm good.

Photo courtesy of nyphotocraft.com

And we tried to go gluten-free and sugar-free! Oy, what the GFSF people are saying about us now. I do worry abou the sugar not being good for the yeast, the Lyme (and the white flour also, and what about those genetic modifications the food companies are doing?) But we get through the day. 

Herxing is our way of life at the moment, so we also have to take our fun moments as they come. Yesterday was one great fun "moment." 

"Night and day, Night and day
Under the hide of me
There's an oh such a hungry yearning burning inside of me
And its torment won't be through...." (Cole Porter)

Friday
Sep282012

Smile in my Heart

Just want to say that I received an amazing note through this website from an anonymous reader that totally made my day yesterday and today! :)

Thank you. You put a smile on my heart. Just when I really needed it.

I'm relaxing, knowing I have to get my big boy into the Epsom salt bath (first, put the plastic bag over his cast.) What I really want to do is run out and buy a bottle of chocovino, which someone on one of the PANDAS threads has been writing about recently! I just posted something about chocolate being a bean, and a bean is a vegetable, therefore...hey, it's just logic! And Friday night!

So, here's the funny for today. Every night, I wake to find a kid in my bed, or wake up to find a kid trying to crawl into my bed. Thanks to another thread on either the PANS or Lyme site, I found that we are not the only ones--seems like many of these kids cannot fall asleep or stay asleep by themselves. We've had mattresses and sleeping bags in our room, my son in our bed, my little daughter in my bed. Yeah, she's got her nightmares, but I guess living in this house is gonna cause some. 

So, at any rate, getting back to the funnies, I woke to find a sleeping beauty in my bed. (Not talking about hubbie here.) So, since it was my daughter, I dressed in my room and in the dark. I pulled on black leggings, a short black skirt and a shirt. Comfort clothes for Friday. Taught all day and worked through lunch. At 3:30, I was in a foul mood because I had to return to the dentist for the filling after a root canal (double yuck.) At 4:00, I was in the chair when I looked at my legs (for the first time all day) and realized that my leggings were inside-out with the seam on the outside. All day, I wore them like this. Did any one of my 22 fifth graders notice? Perhaps they thought it was a style? Perhaps they're, even now, chuckling? Oh, me!

Maybe it has something to do with my upcoming birthday; I'm getting older. No; I'm staying young. In my clothes and in my head.

Wednesday
Sep262012

Day of Atonement

And really, I shouldn't be anywhere near this electronic obsession of mine. I shouldn't be touching money (I'm not right now) and I shouldn't be writing. I should be reading and going to services and contemplating. I shouldn't be using the phone. And I should be fasting.

Well, I'm fasting. For the morning, right now. But if fatigue overcomes me, if I feel I won't have enough patience for my family, I won't. We are going to services (by the lake if the weather works for us!) And the best part of the day will be a visit with my brother and sister-in-law and their family to break the fast. My son has been so looking forward to my SIL's cooking that I made him noodle-kugel this weekend. It doesn't get much better than butter, eggs, sugar, noodles, cottage cheese and sour cream. With a sprinkling of cinnamon. 

What do I atone for?

I don't call my friends enough. I don't think about the smaller problems that people have and sometimes look down upon them, when ours are so much greater and little problems don't mean much to me anymore.

Maybe I'm not there enough for friends who are going through rough moments, or maybe, knowing how challenging my life is, they don't fill me in as once they did.

I will try to not hold resentments in my heart.

Why waste more time and emotion thinking about the doctors who didn't believe us. And on that note, good news! We are taking our son to see Dr. Judith Leventhal, a neuropsychologist who is Lyme Literate. We knew this--everyone who knows my son knew this--but it's good to hear her say it (well, my husband heard it)--she told my son that he is bright. And that the spirochetes in his brain slow down his processing.

Thank you, thank you! It's good to have that validation. 

What to atone for?

I can't say I'm sorry for having a messy house. I'm not sorry. And we work to keep it not so messy. 

I'm sorry that I lose patience, at school, at home. I try to remain calm and patient all day with my 22 5th grade students. And I try to remain calm and patient all night with my 2 kids. And I mean allllllll night because one or the other is waking us up. And if it's not them, then I'm so used to getting up that I wake up anyway! 

I'm sorry that I can't correct this last batch of homework, that I've been carrying it back and forth and back and forth with me. No, I don't mind that my school has asked us not to give homework on certain days (nights of concerts, etc.) Less homework means less correcting for me.

I'm sorry that I'm not working on my book. I looked at it recently and I don't like the first chapter again. I know that there's a good message in the story and that I need to finally write the whole thing and try to get it published. But I'm out of inspiration right now and out of energy.

I'm sorry that I'm not playing guitar or singing. I will cut my nails and pick up the guitar and practice before we have our classroom talent show. I'm sorry I'm not bicycling. My last ride was my 52 miler. I'm wiped out every Saturday now and Sunday is dedicated to the kids' activities. So, I must really apologize to myself because our lives and the stress we go through have affected the way I treat myself.

I don't covet anyone else's husband. I don't steal. I don't lie. 

I am sorry for gossiping. It happens at times. It's an inate sin. I try not to do it often and I usually am on the listening end, and I never gossip about a friend. My friendships are golden and sacred.

I don't cheat.

But I don't keep the Sabbath. Although, lately, I feel like I could lie in bed all day at least once a week, but somehow I don't think that's what anyone had in mind about keeping the Sabbath. 

I don't believe in false gods, but perhaps I put faith in false medicines? And I'm not even sure I believe in The G-d, but I'm not taking any chances and thus writing the name with a hyphen. I find it hard to believe when I see so much suffering. And then I marvel at how some people believe even more strongly, and get faith and strength from their belief. 

I do believe in the strength of good thoughts, good actions of people. And the love of a dog.

I believe in grabbing the moments of happiness as they come, which is why I'm just hanging out in my bed, writing away in quiet when I need to get up, shower (oops--not supposed to do that on Yom Kippur) and get to services in an hour. An HOUR???? 

Bye!