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."

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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 .

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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"

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)

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.

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!

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?)