Tuesday, July 22, 2014

Flawless

All morning, I've been thinking back to the girl I was in junior high and high school. I was a little bit hopeless. While my friends could execute the eleborately sculpted hairstyles of the 80s and 90s, and perfectly swipe on the latest make-up trends, I couldn't. I wanted to, but I always ended up looking as if I'd gotten ready in a very dark room. I would slide back to my comfortable default of tomboy, and hang out there.

As a young mom, my go-to look became either a naked face and simple ponytail, or the bare minimum of mascara and lipgloss. I wanted to look pulled together, but it was really a lot more work than I was willing to do. Which makes mornings like this amusing and a little sad to me. 

In the time since Ella's arthritis journey began, I've become an expert with a flat iron. I've learned more than I ever wanted to know about the nuances of eyeshadow, and have debated the merits of different mascara brands. My jewelry box overflows with accessories, a far cry from the few funky pieces I once owned and loved.

Part of my transformation is due to maturity and the influence of one very style savvy friend, but more so to the quest for credibility.

Two years ago in a rheumatologist's office, I realized that my intelligence is tied into the perfection of my eyeliner. The more put-together I look, the more seriously medical professionals take what I have to say. My naked face makes me invisible, while a full face of make-up makes me worthy of being heard. It's a game of perception.

Which means that I was up an extra hour early this morning. An extra dose of conditioner to make my hair shine, a fresh coat of laquer on my nails, and just the right amount of perfume are how I arm myself for battle. I take a few deep breaths and practice speaking in lower and slower tones than my usual rabid squirrel. I'm calm, cool, and in charge; and I have to sound that way. There can be no trace of my ADD this morning. Experts don't chatter in fast-forward.

Authority figures are perfection. That's what I've learned in the past two years.

If all the world is a stage, and we are merely players, I'm playing my part today. I've painted on the mask of rational and reasonable motherhood. I put on my visible intelligence along with my jewelry. I spritzed on confidence along with my perfume. It's an act, a carefully fashioned persona. It's ridiculous and maddening, and dead necessary.

One last check in the mirror, and a final tug at the shape wear that's smoothing out my imperfections. My two year old pats my leg and smiles up at me, "Pretty mama" comes from behind her paci. And I know I'm done.

The flawless image of calm perfection this morning is all part of a absurd game, but it's the most important one I'll ever play. I didn't make the rules, but I've  learned how to play by them, and I'm going to win.

Monday, July 21, 2014

You Made It Possible

A few weeks back, we picked up Ella's new-to-her wheelchair. It was functional and comfortable, but not really pretty. 

I took it to one of the local auto body shops, Detroit Custom & Collision in Sachse, and asked what they would charge to paint the frame. The owner shook his head and said "I'm not charging you for that. I don't know enough about them to take it apart, but if you can get the frame for me, I'll paint it any color she wants for free." (My Dr Who fan picked "Tardis blue.")

I took it home and looked it over. I'm not that knowledgeable about wheelchairs either, and wasn't sure I was up to tackling such a big job.

I was dropping off my husband' scar for service at Happy Motoring in Wylie, when I mentioned to him that I needed a wheelchair mechanic to take it apart...did he know of one?

"No, ma'am, but I'll do it for you."

I smiled and thanked him. I asked what that would run me. "Nothing," he told me, "I couldn't even think of charging you for that."

We dropped it off to be disassembled on Monday, took the frame to the painter on Tuesday, picked up the painted tubes on Thursday, and the reassembled chair on Saturday morning.

With the painted tubes

The guys responsible

The finished product 

A little extra something

I have you to thank for this. I know that this part was free, so I should be thanking the generous guys who gave their time and talent to this project, and we have. A lot! But I also have to thank you.

The generosity of my readers paid for the wheelchair insurance wouldn't cover, but it's more than that. You have taught me about the kindness of strangers, and their willingness to help. You have taught me to ask for help, and that's huge for me.

For a long time, I have worked hard to be strong and carry it all. In doing so, I was robbing other people of the joy of generosity. Thank you for teaching me that.


**If you live in this part of Texas and your car needs work, please give these guys a call. They do excellent work, and are really nice guys.

Wednesday, July 16, 2014

You Should Totally Buy Luca's Book (Giveaway!!!!)

Last year, I undertook an epic journey through Hell and Buffalo, Texas to see my college roommate. The beginning of this year, I flew to Virginia to see her again and celebrate her birthday. (One of the plane's engines died over Little Rock. Why can't it ever be an uneventful journey to see her?)

Look how cute we are!
She's a huge MasterChef fan, and an even bigger fan of Season 4's winner Luca Manfe, so she was beyond excited when her husband arranged to have Luca make dinner for her and a few friends. (He can make dinner for you too. Here's his website.)

I could write numerous blog posts about that dinner. The food was amazing. The setting was gorgeous. Luca was funny and charming. His beautiful wife, Cate, was incredibly kind, and at one point left me in awe with her delicate, respectful, quiet, and yet firm defense of her Christian faith. (Seriously, she blew me away. I want to be her when I grow up.)

But that's not the point of this post.

A few weeks ago, Luca released his new cookbook My Italian Kitchen. I sent him a Facebook message (yeah, we're "friends" now. I'm cool like that.) and asked how I could get an autographed copy to donate to a local JRA fundraiser. I wanted to buy it, I just wanted him to sign it. He told me "Don't be ridiculous. Let me send you one."

And he did!
http://www.amazon.com/dp/B00JU5H07M/ref=rdr_kindle_ext_tmb


I carefully glanced through it, and quickly decided that I needed one for myself. I got mine last week, and I'm in love. I'll admit up front that I'm not an Italian cook. My idea of Italian cooking is opening a jar of Prego. (Sorry, Luca!) I just wasn't raised that way. I can make all kind of Mexican food like a pro, but there weren't that many Italian cooks in small town South Texas.

I love this book. (Did I say that already?) It makes me able to pretend to know how to cook like this, and be able to convince other people that I can too. The genius of this book is in the writing (and in the recipes!) There are thousands of cook books out there, but this one is written as if Luca were standing in your kitchen and explaining it to you himself. It's friendly and easy-going, and takes most of the fear out of cooking Italian for me.

So far, I've made his basic pasta recipe (easy peasy!) and his steak with vanilla sauce (oh my holy goodness!) I don't know how many hours I've spent drooling over the food porn that is My Italian Kitchen, but it's a lot.

I decided that I couldn't keep this to myself, so I'm giving a copy away. Usually when I give away books, the publisher or the author gives me a promotional copy. Not this time. I didn't even ask. (He'd already given me one for the fundraiser anyway.) I like it so much that I'm buying the giveaway copy myself! (See? That's love right there.)

If you want to win one, leave me a comment and tell me why you love Luca (or better yet, why you're a Cate Manfe fan!), your favorite Italian dish, or what scares you about cooking Italian. You have from now until Friday at Midnight to enter. I'll pick a random winner on Saturday! 


Hooray!!!!! It's a cook book giveaway!!!

If you don't win, you should absolutely buy this book! It's worth it.

Also, go visit my friend Scottie's DIY website and see how she's so much more than a pretty face. She's a genius!!!

Saturday, July 12, 2014

This Is What Proof Looks Like

I didn't believe them when they said that her nerves were normal. Call it instinct or intuition, it doesn't matter. I knew that they were wrong. I knew that the diagnosis of a psychosomatic disorder went right in the face of everything I knew about my practical and pragmatic child. I just knew it was in her nerves.

And I'm right....at least in part.

Two nights ago, I was helping her out of the bath when I noticed that while her fingers had wrinkled, her toes were smooth. After 45 minutes under water, they had not a single crease.

Here it is, proof.


It's a positive sign of damage to her autonomic nervous system. It's a system no one has bothered to check, or even mention. (You're not really surprised, are you?) I don't know what it means for her other than now they have to listen. This is one of those things which can't be Conversion. The mind can't fake this.

I prayed for clear evidence, and now we have it. Irrefutable proof. 

In the short term, it means that the neurologist will be removing "Conversion Disorder" from the paperwork she sent to the insurance company. Lifting that label clears the way for genetic testing. Genetic testing means we should be able to figure out a name for this thing. A name leads to a plan of action.

We hope.


Tuesday, July 8, 2014

The Strangeness of the Internet - Turning on the Lights

The internet is a very weird place...thing...entity. I don't really know what it actually is, which seems strange to me considering how much time I have spent on it...in it...among it?

I remember so clearly the day that I started my blog. I was a very lonely stay-at-home homeschooling mom of four little kids. We lived in a neighborhood populated by mostly elderly people, and my children were the only kids for blocks. Every morning, my husband would leave for work, and I would sit in the silence of soul-crushing isolation. After months of being alone, an over-the-phone friend suggested that I should blog. I'd never read a blog before that day, and I didn't really understand the point of them. After scanning through a few of them, I decided that this new hobby might help to fill in a part of my day. 

That night, I discussed it with my I-love-my-privacy husband. He looked perplexed when he asked, "Why would you want to share our lives with complete strangers? It's not like they'll pay you for it. You're just inviting people we don't know into our lives, and for what?" The past few months, and especially the past few days, have finally answered him. 

We have been overwhelmed by the outpouring of love, support, prayers, and help from these strangers I invited into our lives seven years ago. Over the years, you have shared our grief and our joys. You've laughed at the goofiness of us, and cried with our heartbreaks. This past week, you went with us on the journey through this medical maze. In our worry and fatigue, I laid it before you, and you ran with it.

My beloved readers forwarded my blog to family members and friends. You harangued people you knew in high school, and the guy who once to you to the prom, to read over the medical history of a child you've never met. It didn't matter, because so many of you know her and love her, even if it's just through a computer screen. You pushed and nagged, and then began for us a tidal wave of responses.

We were wading through the plethora of comments when the emails started coming in. In all, twenty three doctors have written to me, offering opinions and advice. They've told me where to go from here, and which tests need to come before which others. They've told us where to look for answers, and who to ask those questions. We've emailed back and forth with specialists from all over the world, and learned much from their willingness to come to the aid of a little girl they don't know. They have reassured us, and praised our openness to the ideas and opinions of others. They have laughed at the daring of a mom who would ask the world to brainstorm a diagnosis, and been impressed by the responses we have received...and they had ideas. Lots of ideas.

We are beyond blessed. I don't know what that word would be, but we are miles and years beyond merely blessed. 

I have you to thank for all of it. 

Seven years ago, I waded out into this strange internet thing, not really knowing what it was. I had no way of knowing what I was doing when I began sharing our lives with a world-full of strangers. I didn't know then how much I would come to know and love many of you, or how attached you would become to us, and us to you. I didn't know that here, in our darkest moments, it would be you who would look for the switch to turn back on the lights.

Thursday, July 3, 2014

Mystery Illness - We Have to Start at The Beginning

***Before you start reading, please know that Ella has been tested three times for Lyme disease, and spent several months grain, sugar, and dairy free. The tests were negative and the diet didn't help.

I've started writing this several times, but since the doctors who examine her always ask about when she was born, I guess I should start there too. Some dates will be exact and others approximate. It's hard to remember everything from ten years. It's also crazy long. I'm sorry for that, but I wanted to make sure not to miss anything. I'm not sure what's important and what's not, so I put in anything I felt might be relevant. If you think I've missed something, please ask me about it. Thanks for reading and for your willingness to help solve our mystery. If you have specific suggestions for tests we should have run or doctors that she should see, we'll be thrilled to see them.

7/21/04 Ella was born at 36 weeks 4 days and weighed 6 lbs 4 oz. She was small but mighty and went home in 24 hours

7/24/04 She ran a 101 fever. I took her to the ER where they performed a spinal tap to culture for infection. She spent the next three days inpatient at Children's Hospital in Oklahoma City on antibiotics just in case.

7/27/04 The culture was negative. There was no explanation for her fever. We were sent home.

In the year that followed, she received all shots on time except the varicella which we decline. She crawled at 7 months, talked at 9, and walked at 10. She was potty trained by 2 1/2. She was a happy, healthy little girl.

12/06 She developed an infection in her outer ear canal. Her ear swelled up until the normal folds were no longer visible and the ear canal was swollen tightly closed. It looked like an inflated balloon. There was a purplish circle around the ear approx 4 inches in diameter. She was taken to the ER and put on IV antibiotics. This was followed by a 10 day course of antibiotics at home.

2/07 She got the first of what was to be many episodes of boils. The first episode had 5 on her lower trunk, each from nickel to quarter size. Her Ped prescribed antibiotics.

In the next two years, she had 13 recurrences of boils. Never fewer than two or more than six. They appeared on mainly on her trunk, with two on her legs and one on her face. (I know because she still has faint scars from each one.) Each episode was treated with antibiotics.

11/07 She began having what I would call flash fevers. They were high temp, short in duration, and appeared randomly. (No discernible pattern.) She would be playing normally, then start to whine or when she was older would say, "Mommy, I don't feel good." Her temperature at that moment would be 103 or above. The fever would last around 15-30 minutes, never longer than an hour, and then return to normal even without any medication. Once the fever had disappeared, she would return to normal with no sign that she'd ever been sick. This pattern continued from age 3 until age 7.

During the same time period as the flash fevers, Ella had disappearing rashes. As with the fevers, they were short in duration and followed no discernible pattern. Either I would notice that she had a rash on part of her body, or she would start furiously itching. The rashes would last the same 15-30 minutes as the fevers. Rarely they would stick around for an hour or longer, but that was only a handful of times. The fevers and rashes only coincided twice. (Thank you to my friend Kara who made me keep a journal of them.)

When she was not flash fevering or rashy, Ella was well known among our friends for running low grade 100.5-101.0 temperatures. She would have at least one a month, and often two or three. It was so commonplace to us, and she felt so normal during them, that our friends thought nothing of still having play dates despite her elevated temps. Not a single one of her friends ever got sick from playing with her during these times. Our Ped tested for everything he could think of and found no reason for any of these symptoms.

While she didn't pass stuff along, she caught everything that came along. Her symptoms would be many times worse than any other child we knew, and were likely to be the less common ones. Her doctor would refer to her as the "asterisk child." If there was a symptom at the bottom of the page that said "possible symptoms" but not a for sure one, she'd be certain to have that weird symptom.

In spite of all of this, she wasn't a sickly child most of the time. She was rough and tumble, and ran around as hard as any of the kids in our social circle. 

As she turned seven, the flash fevers and disappearing rashes became less frequent. By Fall of 2011, they seemed a thing of the past.

4/2011 She had a bladder infection. She was put on antibiotics. Three days later, the pain from it was severe enough to send us to the ER on a Saturday night. It took two rounds of abx to clear it up.

12/2011 She had a particularly nasty bout of strep. As it was her 2nd in 4 months, and our GP wondered whether she might be a carrier.

1/ 2012, the second toe on her right foot swelled up and turned purple overnight.

2/2012 Her left knee swelled up and was warm to the touch. We went to the ER at Children's. They drained her knee and cultured the fluid. Nothing grew.

2/29/2012 She was officially diagnosed with JRA and put on methotrexate and ibuprofen.

4/2012 She now had five joints in flare. The toe, both knees, her left ankle, and left foot. Enbrel was added to her drug cocktail.

9/2012 The last of the flared joints stopped swelling. We continued methotrexate and Enbrel until 6/20/13

5/23/13 Ella was in an horrific scooter accident. She hit a bump in the sidewalk on her way home from a friend's house. The handlebars whipped around, knocking out her top front permanent teeth, breaking her upper jaw in two places, and knocking her immediately unconscious. She went face first into the concrete and sustained numerous skin abrasions and a concussion which left her in an altered mental state for just over 24 hours. Due to her injuries she wasn't allowed narcotic painkillers, and drug interactions meant she couldn't take anything more than the ibuprofen she already took daily for her arthritis. She recuperated with a bag of ice as her main pain killer. 

6/20/13 At a routine quarterly rheumatology appointment, it was decided that she was in remission and that we could stop all medications.

1/25/14 Strep again. It loves her in Dec/Jan. Abx

2/8/2014 Ella woke up to her left knee flared. In the next two weeks, it would spread to 13 joints in her legs and feet.

2/20/2014 The rheumatologist put her back on methotrexate (although this time pills instead of injections) and a higher dose of Enbrel.

3/21/2014 She and her younger brother both had strep throat.

4/1/2014 She complained that her thighs "felt tired."

4/2/2014 She said that her legs felt "heavy" and was limping.
 
4/3/2014 She would walk across the room from object to object, just a few steps at a time. Complained about feeling cold, but no fever.

4/4/2014 Slightly elevated temp 99.6. That night her knees buckled under her as she walked across the living room.

4/5/2014 Temp still in the 99s. She spent most of the day dozing on the couch because she didn't feel well. When she walked, she used her cane for balance and support.

4/6/2014 Could only walk when using walls or furniture for support. Could stand for brief times unsupported.

4/7/2014 Visit to the GP. Blood tests were normal. Strength testing showed noticeable weakness in both thighs, particularly in her quads.
 
4/8/2014 Unable to stand unsupported.

4/9/2014 I took her to the ER at Children's Dallas. She was examined by two neurologists. They did strength testing, but ran no other tests. Our GP sent over the results of the blood tests he had performed two days previous. No blood tests were done in the ER. After some time, and a disagreement as to which department would assume responsibility for her, one of the neuros stated that the muscle weakness in both of her thighs made no sense, and that she was clearly acting.  

Over the next few days, her legs gradually got stronger until she didn't need the crutches for anything but balance, but didn't need to lean on them unless she was tired.

4/16/2014 She saw the chiropractor. He noted the beginnings of muscle atrophy in both of her thighs. After an adjustment and electrical muscle stimulation, she was able to walk out of the office without crutches. She was wobbly but felt better.

4/17/2014 She complained about a sore throat and general feeling of malaise. Her temp was 99.7.

4/19/2014 She woke up with legs that were noticably weaker. She couldn't stand unsupported by the crutches, and was unable to maintain a contraction in her quad muscles. They would rapidly tense and release - almost a quiver more than a contraction.

4/21/2014 Still complaining about sore throat. We saw our GP. Her throat was red and raw, lymph nodes were swollen. Strep test and culture were negative. He suggests taking her off of sugar, dairy, and all grains to see if there is a dietary component to what is happening.

4/28/14 Elevated temp 99.5 with a stomach ache and general malaise.

4/30/14 Knees buckle with every step. Relies heavily on crutches to stay upright.

5/5/2014 Appt with GP to get referral to a neurologist. He notices that weakness has now spread to lower legs. Her calves are doing the same rapid contract/release as her thighs.

5/10/2014 Neurologist appointment. He can find no explanation for her obvious weakness in both legs or the muscle wasting in her thighs. He theorizes that it may be related to infection and suggests that we wait a week to see if she improves on her own. 

5/15/2014 After a period of slowly regaining her strength, she has an elevated temp of 99.8 and complains of feeling tired all over.

5/17/2014 Her legs are weaker than on 4/30. She puts more weight on the crutches than her legs, because her legs buckle if she tries to bear too much weight on them.

5/23/2014 Elevated temp 100.1, achy all over, tired, stomach ache

5/25/2014 She can only raise her toes off the ground with concentration and effort. She says that they "just aren't listening."

5/28/2014 Quarterly rheumatology appointment with new rheumatologist. (Hers is on vacation.) The rheumy checks her joints and misdiagnoses elbows sore from the crutches as in flare. She remarks on how cold to the touch her legs are, then says that she has seen the original ER report from Children's (when they said that she was acting). After a very brief strength test she says that she agrees with the ER's assessment that this is Conversion Disorder and that she can find nothing organic as a cause. Routine blood tests from this day disagree with her as her CK levels are 3153 and aldolase 27.7 (we won't know this for nine days) 

6/2/2014 Elevated temp 99.5 and she says that she feels achy all over.

6/3/2014 Elevated temp 99.8, still achy and her stomach hurts. She sleeps for most of the day.

6/5/2014 Awakes with legs too weak to use the crutches any longer. Our GP calls in a prescription for a wheelchair.

6/6/2014 Receive frantic call from rheumatologist's office about elevated CK and aldolase levels. We are told to go to the Children's Dallas ER immediately, which we do. They repeat the blood tests of 9 days previous, and CK and aldolase are back to normal levels. She is examined by three different ER doctors none of whom can find reflexes in her knees or ankles despite several attempts. Two nurse will try as well, and one finds minimal response in her left ankle if she hits it forcefully. One of the doctors also points out that she has foot drop in both feet. She is admitted as a rheumatology patient with a request for a neuro consult.

6/7/2014 6:30 am one neurologist stops by to check on Ella. She does strength testing and checks her reflexes. She finds very faint responses in both knees and ankles. Mentions that her legs are really cold.

2:30 pm A group of five neurologist stop by on rounds. They repeat the strength testing and reflex check. After one of them struggles to find reflexes, the attending steps forward and whacks Ella's knees and ankles hard enough to get a response. Ella complains that it hurts, and later has bruising where she was hit on her left knee.  After a brief conference, they reference the earlier ER findings from our initial visit in April. While they don't believe that she is acting, they decide that it must be Conversion Disorder. We are sent home with a recommendation for a psychiatric evaluation.

6/9/2014 New neurologist. The previous one wouldn't see us after finding out that she is a Children's patient (we should be going to them), and Children's neurology asked our GP's nurse point blank why she was wasting their time with a psych patient. We decided to go with a fresh opinion. She does strength testing, notices the coldness of her feet, and checks reflexes which are present. She orders an MRI of her lower and middle back.

6/13/2014 Elevated temp of 99.9, lethargic, achy, stomach ache

6/15/2014 Says that her legs feel funny "like they have something wrapped around them" which muffles sensation. That night I test her feeling by putting ice on her legs and feet. She frowns and moves away from me as best she can.

6/22/2014 Elevated temp goes from 99.2 up to 100.0. She falls asleep in the car on the way to 5:00 pm Mass. She leaves in the middle of Mass because she feels as if she's going to throw up. I follow her to the bathroom and ask her how often she throws up. She replies a couple of times a week, but her stomach hurts most of the time. 

6/24/2014 Her right foot is floppy and she says that she can barely feel her legs. I repeat the ice test that night and she doesn't react at all.

6/26/2014 10:00 am Follow up with the neurologist. The MRI was normal except for scoliosis in her lower spine. After repeating the strength testing, she says that she is unsure what else she can do for us. She has received the file from Children's with Conversion Disorder listed as the diagnosis. She states flat out that she doesn't know what is going on with her, and so will agree with Children's that it must be Conversion. When I point out that other than the back MRI no one has actually tested anything, she agrees to an EMG and nerve study. She says that doesn't expect it to show anything, but will do it to appease me. 

3:00 pm Tired of hearing Conversion, we have an appointment with a psychiatrist who deals with Conversion Disorder. He spends well over an hour talking to and assessing her. He finds that she is bright and articulate, logical and pragmatic. She is coping well with the loss of the use of her legs and she has a good support network in her family. He states flat out "I am 100% certain that this is not Conversion." After watching her move, he says that he doubts it is the nerves. He predicts that the EMG will be normal and suggests strongly that we get genetic testing. He asks for an update once the tests are done.

7:00 pm I call a close childhood friend who is a child psychologist. She knows Ella well. What does she think, is it Conversion? She says absolutely not.

7/2/2014 EMG test results come back as normal. The nerve conduction study is mostly on the lower side of normal with three areas "borderline." (Just below the lowest normal range.) The neurologist says it is as expected, there is "nothing wrong with the nerves in her legs other than compression from being in the wheelchair for so long." (In reality, it has been less than a month and she spends most of the day in a chair, on the sofa, or sitting on the ground.) We are told the the finding confirms Conversion and she needs psychiatric care. We are "wasting our time looking for a physical cause."

7/3/2014 I email the psychiatrist who assessed her to tell him the results. He calls me very upset that they have diagnosed her with Conversion without exhausting all testing. He remarks that "borderline" in a 10-year-old is not normal. He then promises to get back with me after the holiday. He has ideas for what we should do next.

8:00 pm Ella goes to bed early with an elevated temp of 100.1, achiness, and chills. If she follows her usual pattern, we will see a further decline on 7/5

This is our girl. She just turned 10. Thank you for your prayers and suggestions!





Monday, June 30, 2014

Panic and Frustration

I've never had panic attacks before. I suppose it's because I've never really had a problem for which I couldn't find a solution or a way out of before now. I've always been resourceful, scrappy, and an expert researcher and these have gotten me through the first nearly 40 years of my life pretty well in control of it.

Until now. Until Ella couldn't walk and there was no easy explanation.

I'm banging my head against walls here, and I can't see a way to find help. We've seen specialists who admit their confusion at her symptoms, and then decide that because they don't know there is no answer. In the face of no answer, they label it Conversion Disorder. 

Conversion has become the most hated word in my vocabulary. It means a psychosomatic illness caused by great stress. There are supposed to be strict criteria met before a 10 year old girl can be judged to have a serious mental illness, but there doesn't seem to be any interest in meeting them. The first of these criteria is that testing must have ruled out all physical/biological causes. They've done very little testing. She's had one MRI because I insisted on its being done. When it came back normal, the neurologist said (this is a paraphrase, but pretty damn near a quote) "I don't know what else I can do here. Her symptoms don't make sense to me, so I'm going to call it Conversion. She should see a psychiatrist."

So she did.

The psychiatrist spent just over an hour talking to her before saying "She's very old for her age, which I would expect in a child who has a chronic illness. She's logical and pragmatic, wonderfully well-adjusted, and I see absolutely nothing which would lead me to suspect Conversion." If a girl in a wheelchair can skip, she did that day. We were both relieved that it wasn't all in her head. Now, we thought, the other specialists would test her. We had slain the specter of Conversion.

We were wrong.

It doesn't seem to matter what the psychiatrist found. The neurologists are locked into what they see in her chart. Dr. M wrote down Conversion, and everyone else is following like lemmings. Our fab GP set up a nerve conduction study, only to have it cancelled by a neuro who wanted to know why he was "wasting my time with a psych patient." There seems to be no ability to think outside any box.

When she first started getting sick, people said I'd have to fight for a diagnosis. I assumed that they meant with the insurance company, or to find specialists. Our insurance company has been great, and we can find doctors. What I didn't understand was how much time would be spent fighting laziness and apathy. Too many physicians are there just to collect a paycheck, and the drive to heal anyone has left them long ago.

We've learned in the past few weeks, from personal experience and intense research, that Conversion Disorder is the fallback of puzzled neurologists who have no ideas. Over and over, I've read stories of people sent to psychiatrists for things which turned out to be real...and time was wasted and that time can do terrible damage. I've read medical journals and government statistics that show as many as 40% of people diagnosed with Conversion are found to actually have a biological cause within five years, and an additional 20% within ten years. If those pretty standard number are correct, then a minimum of 60% of cases are misdiagnosed. 60%.

And that's what I'm running up against. We've hit the wall of everyone's favorite cop out, and nothing else matters but maintaining that label on her. It doesn't matter how many times we show that her symptoms don't fit, or that the psych disagrees....they shake their heads in confusion and say its in her mind.

I'm screaming for help in a room and no one can hear me....

And so the panic attacks have started. 

Because she's worse and I can't get help for her. She's lost all strength and 95% of her muscle control. Her legs have lost all feeling. I'm terrified that it will start to move upward and that she will die before anyone listens. That's the fear. That she will die and I won't be able to help her.

For the first time in my life, I don't know what to do....so my body has responded in the only logical way...trying convince me that I'm either having a heart attack or slowly being smothered by an elephant on my chest. (Yes, I've seen the doctor. I'm fine.) Because nothing helps in a crisis quite like gasping for air and feeling my imminent death approach with every waking moment. I'm sure there's an evolutionary reason why this makes sense, but it sure isn't helping anything now.


*** We're going to play another fast round of Crowd Sourcing a Diagnosis tomorrow. Bring your medical books, google pages, and your thinking caps. If the doctors won't look for answers, by golly, we will.