Newsletter May - July 2013

 
 
 

Latest News and Events

TCAPP has finished its first ever silent auction/event and on-line auction. Special thanks to our Fundraising Chairs and Board Members, Susan Pinkham and Carol Seaman for all their hard work. Also many thanks go out to Nina Train for her help in the on-line auction. At the end of the newsletter, we also have a donor page thanking all those out there that have made TCAPP possible. These fundraising events are so important and essential in making it possible for us to continue our work. On August 4th, because of these events, we were able to hold a Medical Think Tank Focusing on Pediatric Pain and Ehlers-Danlos Syndrome (EDS) (see Dr. Francomano & Dr. Teasley lower right picture). It was an energized meeting that discussed all the co-morbid conditions seen with EDS and this enabled these physicians to learn from each other, share notes, and they are now working on composing a consensus paper to be published in a medical journal. In addition, they all gratefully agreed to let us record their lectures so we will have them available for viewing for free starting in September.  As an organization, we believe that pulling together physicians from various sub-specialties to work together is essential in advancing treatment options and knowledge in the medical community about various pediatric pain conditions. We hope to repeat this event next year and add on a day for a family conference as well. Other short-term goals we have as an organization is to :

  • Create and produce a documentary on the misdiagnosis that happens with pediatric pain conditions, showing the struggle, the pain, and the long road that many families have to endure to find help for their children. We'd like to personally thank all of the families that have already allowed us to film them and tell us some of their stories.
  • Look into a camp focusing on pediatric pain conditions and getting funding to get families and children there at minimal to no expense.
  • Fund or get grants for a couple of research projects dealing with medications that may help with some chronic pain condition.
  • Enlarge our budget for the Family Assistance Fund so we can help more individuals/families achieve their goals of independent living with chronic pain (See Nicole's story about Watson).

If you or if you know of anyone that can help us with these projects either with time or monetarily, please contact us at info@tcapp.org.

Knowing About Conversion Disorder, Somatic Symptom Disorder, and the Harm of Misdiagnosis and Premature Labeling

By: Richard Barnum, M.D.

Parents of children with pain problems often have great difficulty arriving at an accurate diagnosis. Among their frustrations in this area may be that doctors who don’t know the right diagnosis will conclude that the child’s pain stems from an emotional rather than a physical cause. Such a conclusion may sometimes be correct, but it is more often a reflection of the doctor’s lack of understanding, and it is not usually helpful.
 
Emily’s Story
 
In my practice of general child psychiatry, I see an increasing number of children with pain problems and with autonomic nervous system problems. I currently work with a girl (whom I will call Emily), who has pretty significant EDS, and has also suffered from CRPS. She has had a variety of other medical problems as well, and it took a long time for her medical providers to conclude that she really did have EDS. Doctors suspected that she was purposefully dislocating her joints, showing a serious tremor, and altering her gait, all as manifestations of “conversion disorder.”
 
During one of her multiple medical hospitalizations, Emily developed seizures.  Since there was no neurological evidence of epilepsy (and at that time her medical team did not consider the possibility that the seizures were a manifestation of autonomic dysfunction), she was more seriously considered to have conversion disorder.  Hospital medical and psychiatric staff recommended that she be transferred to the hospital’s inpatient psychiatric service for further treatment. Her mother was upset at this recommendation, as it did not “feel right,” but she did not want to deny her daughter treatment that might help her.  She asked me what I thought about it.  I was skeptical as well, but suggested that she try to get one of the psychiatrists making this recommendation to explain to her in detail just how spending time on an inpatient psychiatric unit with depressed and suicidal teenagers would help Emily to get over her conversion disorder.  As it happened, no one was actually able to do this, and so Emily did not enter the psych unit. 
 
Emily did not have any specific mental health diagnosis at that time.  She was generally comfortable meeting with me, but she remained very defensive about any suggestion that she might have psychological problems of any kind, and so she only agreed to meet with me very infrequently.  The theory of our work together was that I was serving as her psychiatrist essentially to protect her against medical professionals accusing her of having conversion disorder and thereby disregarding her medical symptoms.  She was comfortable with this plan and grateful that I was indeed able to help her in this way; and, in fact, I talked with a lot of people on the phone and went to more than a few meetings to make clear to others on her treatment team that Emily’s psychological health was being taken care of. 
 
Over time Emily’s problems with EDS and dysautonomia became somewhat worse, as they tend to do, and her diagnoses were no longer in doubt. As the unfortunate reality of her medical problems became better recognized, she began to feel less vulnerable about the possibility of being mislabeled, but she continued to feel angry about how she had been hurt by being blamed for making up her problems in the past. As it happened, her increasing symptoms of POTS suggested that she might benefit from taking Adderall to help stabilize her hemodynamic function. She did have a history of psychological test results consistent with a diagnosis of ADHD, and so we undertook a careful trial of slowly increasing doses of short-acting Adderall to see what effect it might have on her POTS symptoms of dizziness and fainting.  The Adderall worked very well for those symptoms, and also brought her enormous benefit for her school functioning. She went from being a slightly above average student to being a truly outstanding one. 
 
What is Conversion Disorder, Anyway?  
 
Formally the term refers to a complex psychological process by which so-called “psychic energy” (which really means stress or anxiety) is not tolerated or recognized, and is instead kept out of consciousness and “converted” into a physical symptom.  Nowadays it is rare for this diagnosis to be made with any careful attention to this psychological process.   Mostly what doctors mean now when they tell you have Conversion Disorder is not really, “You have a complicated but unrecognized emotional conflict that has found its way obscurely into being manifested as a physical symptom.”  Instead, what they mean is, “I don’t really know what is wrong with you, but your symptoms don’t match anything that I’m familiar with, and I don’t like uncertainty, so I’m just going to guess.”  Or, more simply, “It’s all in your head.”
 
I’ve never really heard of anyone being pleased to be diagnosed with Conversion Disorder (which is odd, since it is a much more benign problem than most chronic pain disorders).  Instead of being pleased, patients feel their reality being completely undermined, and feel blamed, and accused (essentially) of lying.
 
What are the Technical Criteria Used to Make a Diagnosis?
 
The American Psychiatric Association is responsible for developing and updating the system for making psychiatric diagnoses in the United States. It has generally promulgated two categories of diagnosis relevant to physical symptoms.  One is Conversion Disorder, and the other is now called Somatic Symptom Disorder. These are the official criteria for making a diagnosis of Conversion Disorder.
 
DSM 5 Diagnostic criteria for 300.11 Conversion Disorder (also called Functional Neurological Symptom Disorder)
 
A.    One or more symptoms of altered voluntary motor or sensory function.
B.    Clinical findings provide evidence of incompatibility between the symptom and recognized neurological or medical conditions.
C.    The symptom or deficit is not better explained by another medical or mental disorder.
D.    The symptom or deficit causes clinically significant distress or impairment in social, occupation or other important areas of functioning or warrants medical evaluation.
 
This diagnosis rests principally on criterion B (Clinical findings provide evidence of incompatibility between the symptom and recognized neurological or medical conditions), which means, “It’s all in your head.”
 
Diagnostic criteria for DSM 5 300.82 Somatic Symptom Disorder:
 
A.    One or more somatic symptoms that is distressing or result in significant disruption to daily life.
B.    Excessive thoughts, feelings, or behaviors related to the somatic symptoms or associated health concerns as manifested by at least one of the following:

  • Disproportionate and persistent thoughts about the seriousness of one’s
  • symptom(s).
  • Persistently high level of anxiety about health or symptom
  • Excessive time and energy devoted to these symptoms or health concerns.

C.     Although any one somatic symptom may not be continuously present, the state of being symptomatic is persistent (typically more than 6 months). 
 
The previous category (DSM IV “Somatization Disorder”) was similar to Conversion Disorder, in requiring that the patient’s physical symptoms not stem from a genuine medical condition. In this new version, the focus is on the patient’s “disproportionate” or “excessive” subjective distress.  This change eliminates the argument about whether the physical illness is real or not, but it shifts the dispute between patient and doctor from the question of whether the illness is real to the question of whether the patient is too upset about it. The new version also exposes patients to the stigma of being awarded an actual official psychiatric diagnosis, solely on the basis of an entirely subjective judgment by a doctor about the patient being excessively concerned about the illness, without any objective definition of what constitutes “excessive concern.”
 
Summary
 
Diagnoses of Conversion Disorder and Somatic Symptom Disorder are most often made by non-psychiatric doctors in response to puzzling patterns of physical symptoms that they do not recognize.  It is harmful when pain problems (or any problems) are misdiagnosed as emotional problems. This process is rarely helpful, and tends to frustrate and demoralize patients, turning them away from both physical treatment and from mental health care that might be worthwhile. It is important for patients and parents to be aware of this problem of what is actually required for making diagnoses of Conversion Disorder and Somatic Symptom Disorder and especially to be aware of how fundamentally subjective these diagnoses are. It is equally important to be aware that genuine mental health problems can certainly co-exist with genuine medical problems.  Getting effective treatment for real mental health problems is generally easier and more successful when patients and doctors do not confuse these problems with physical symptoms.

The Story of Nicole Toscano and Watson: Recipients of TCAPP’s 2012-2013 Family Assistance Fund

Watson: a 2 year old, 70 lbs. black lab, a service dog trained by NEADS/Dogs for Deaf and Disabled Americans, and my newest family member. This special addition to my family has blessed me with the luxury of living my life with independence and safety while adding his own personality. Watson and I met only 32 days after my tethered cord surgery this summer. Since then, I have learned what it is like to care for another being. This has made me look at my life and modify it in a way that best serves the both of us. Some people might say that the changes I've made in my life add too many extra daily tasks to a life that is already interesting to say the least, but I cannot begin to explain the enjoyment and rewards that Watson is able to give me. He makes sure I go outside and get fresh air many times a day. He keeps my mind thinking of new and creative ways to keep organized and prepared for both of our needs. But these are not things he was trained to do, but an added bonus that I have found. Even without these bonuses, Watson would still take the cake as the most handsome helper. Even when he is exhausted or completely asleep, as soon as I say his name, he is up and ready to help me with anything and everything I need. He opens and closes doors for me, can fetch me food and water from my fridge, is able to help me stand without my walker, letting me use him to steady myself. Watson can pull my walker to me, turn light switches on and off, and press elevator and handicap buttons. He can pick up and give me any and all objects that I drop, from a water bottle, to a pen, to a credit card. Watson also puts his own toys away! Watson makes every day for me an adventure. Having EDS, POTS, RSD, and everything else is an adventure that I never wanted, but in a very special way, having these conditions has given me the amazing privilege of owning Watson, just like the fact that I would never have met so many of my friends if I didn't have these conditions. Watson has made me feel safe since the day I met him. Even earlier this week, he helped me back into my house as I was having an asthma attack and later that week stared at me constantly until I realized the medication I needed to take. I cannot wait to go to college and continue to build my relationship with him as he will continue to help me while I study Social Work and Health Policy and Management. And because of TCAPP's amazing generosity, my path towards getting Watson has been easier. TCAPP has given me so much since I met them. Watson and I are living, breathing, and panting proof that TCAPP is achieving its goals of helping people in chronic pain in any way they can. 

A Parent’s Perspective: Top 3 Mistakes and Lessons Learned in Advocating for My Complicated Child in the Medical System

By : Aurora Richards (Proud mom of two kids with chronic pain – one with EDS, RSD/CRPS, Cranial Cervical Instability and Dysautonomia and one with EDS)

When I sit back and think of how my perspective on healthcare, doctors, and medicine has changed over the years, I realize just how far we’ve come and how many lessons had to be learned to better the care available to my daughter and son that suffer from a multitude of incurable chronic pain disorders. While, we are still learning, I thought I’d share some of the mistakes we’ve made in hopes of helping others who face similar challenges.

Mistake #1 – Doctors Know Everything and Have Answers for Everything
Like many, when my daughter was first diagnosed with one complicated neuropathic pain disorder, I took her to the doctors she was referred to, believing they would hold the answers. They knew everything, they were healers, and their knowledge was unlimited.  Therefore, I only needed to bring her to the doctor, follow every suggestion and all would be taken care of. 

Lesson #1 – Doctors are Humans. They are Not All Knowledgeable and are Fallible as Well
This is a mantra I’ve learned to say over and over again.  And, it is not in our child’s best interest to take a back seat and accept everything at face value in these complex cases.  Rather we should learn as much as we can about their condition. It is our responsibility whether we feel comfortable with it or not. This doesn’t mean that we will have better answers than the doctors and that what we find is always right or the best solution for our child. After all, we aren’t doctors but we do have the 24 hour 7 day insight that no one else has. So, instead of being followers, our knowledge, our child’s voice and a doctor’s suggestion should all be part of the solutions. The key here is a team unit. The professional’s opinion, our opinion, and our child’s opinion must all be part of the consideration for any treatment plan or regimen and the doctors that see this and understand this, are the best fit for our children.

Mistake #2 – Ignoring your Gut Feelings and Forgetting to Listen to Your Child
This was probably our biggest mistake of all. When you are desperate for answers, and you are dealing with doctors who you view as God (and forget that they are human), you tend to ignore that nagging gut feeling that it doesn’t make sense,  that all the dots don’t seem to line up.  Then, to ignore not only your gut feeling but also what your child is feeling by  putting a doctors’ opinion about your child’s pain above theirs, things are bound to go bad.  Because of these mistakes, my daughter received an incorrect diagnosis which led to incorrect and damaging treatment which delayed the correct diagnosis and treatment by 6 months.

Lesson #2 –Don’t Ever Ignore Your Internal Instinct and Always Listen to Your Child: They Know Their Body Best
This mistake was the biggest mistake we as a family made and the biggest lesson learned. I don’t know why, but as parents, we are given an instinct that tells us when something is wrong or awry for our kids. So, if a treatment, diagnosis, or regimen is suggested that is pulling at your instinct and telling you something is off, please don’t downplay it but listen to it. In addition, if your child tells you that there is something wrong with a part of their body, or with something they are experiencing, listen to them.  They do know their body best and it is helpful to encourage them to listen to their body as it is their body for life and the more in tune with their body they are, the better they will be able to manage it.

Mistake #3 – Insisting that all Doctors and Treatments Chosen Take Place at One Chosen Medical Institute
While this ideally would be great due to centralized records, medications in a centralized system, and continuity of care, it is often unrealistic in dealing with some of these complicated cases. It is not worth making a round circle fit in a square peg slot.

Lesson#3– The Perfect Team May Be at Different Hospitals, and Sometimes, In Different Locations but the Relationship is the Most Important
It is important to reach out to other families in the area who have been through the same illnesses, issues, etc. that your child is going through to get connections and recommendations.  And, it is important to keep in mind that each child, their dilemma, and personality is different so these are only recommendations to start with. What is really important is that you meet with the medical professional and you have a good relationship with them and your child has a good relationship with them.  Finally, realize it may take meeting with several different professionals in the same specialty before you find a right fit.  In our family, we joke and say and we’ve kissed many frogs to find our “Prince” and “Princess” doctors. It will save you much time and angst in the long run to take the time to do this then to try and force a medical relationship that doesn’t seem right to begin with. Unfortunately, at times, this may mean having a GI specialist at one institute and a pain specialist at another. While this will increase your personal leg work of keeping medications centralized for the safety of your child and keeping communications open across a variety of institutes, it is the reality of our situation. I firmly believe the working relationship takes precedence over forcing everything to take place at one central institute.

So, there is our dirty laundry, showing that raising and navigating the world of pediatric chronic pain conditions isn’t easy. I’m sure we will continue to make mistakes and learn lessons but hopefully by sticking together with others in the same situation, we can all learn from each other, lessening those painful mistakes. 

The Uninvited Guest         

By: Ellen Smith, EDS Sufferer

Who asked you to join me?
I didn’t expect you and I don’t wish to recognize you
Why did you choose to come to me?
And, when can I expect you to leave?
 
You are with me constantly
I feel you in my blood
I am drained by your presence
I am losing my life as I’ve know it
All because of you, the uninvited guest
 
So, when are you leaving?
No one seems to be able to help me get rid of you
This has gone on for too long
I hope you know you were not invited
Why can’t you get the hint that you are not welcome?
You need to leave me
Let me have the quality of life return
 
You are an uninvited guest

You Look Great

         

By: Ellen Smith, EDS Sufferer

You look great!
Oh no, not this again
You look healthy
Please, don’t you understand?
Wow, how much are you exercising?
You have no idea
 
How do you make others understand?
We look normal
We have spirit
We care
We love life
We have dreams
We love solutions
 
But, the truth is
We struggle every day
We tread the waters to try to remain calm and productive
We don’t know where to turn except to each other
We want to be brave
We don’t want to bring others down
We don’t have answers
We are scared of the future
 We don’t want sympathy,
We want respect and understanding
 
But the truth is,
We are living the hidden disability
It won’t go away, but will progress
The pain won’t stop, but it will increase
It won’t allow us physical freedom, but will cripple us
 
You look great!
Thanks, I appreciate that
You look healthy
Thanks for the compliment
 
I guess we should be happy we look good to all of you
I guess the rest remains hidden
If only you wanted to know the real truth
But, what would we gain by telling you!

Donor List (Silent & Online Auction and May 2013 - July 2013)


Silent Auction Donor(s)
Items Donated By:

Ralph & Lil Staples
Norma Johnson
Jean Roberts
The Thacker Family
Edwin S. Little
Ann’s Mind/Body Healing
Bristol County Veterinary Hospital
Digital Federal Credit Union
Canton Town Club
BJ’s
Shaw’s
Jayne Perkins
Bonnie Heintskill
The Seaman Family
The Perekslis Family
New England Patriots
Boston Celtics
Boston Red Sox
Brianna Greenspan
TJX Companies
Trish Torres
Janet Kazar
The Purple Rooster
Jodi Pinkham
Jennessa Seaman
The Thacker Family
Carol & Evan Taylor
Ellen & Stu Smith
Mandarin Taste
Foley’s Backstreet Grille
Café Venice
Village Wine & Spirits
Roche Brothers
Jim Lonborg
Taylor Pierce
Bizarre Hair Salon
Carole Stepanek
Sarah Waters
Krista Brack
Pam Silvia
Deirdre Eschauzier
Kerri Adams
The Seaman Family
The Pinkham Family
Page Market
Monetary Donations for Auction By:
Alison Fox
Brian Shoemaker
Deborah Eckman
Edith M. Deforest Cortese
Frank Drigotas III
Frederick Gladstone
Gary F. Casala
Giuseppe E. Bissaccia
John & Ellen Jennison
Karen M. Spina
Karen MacDougal
Kimberly B. Teves
Leann Cornell
Michelle Eckman
Nancy B. Methelis
Paul & Virginia Eckman
Raymond & Susan Seaver
Stephen Alessi
Steven David Schaitzberg

On-Line Auction Donor(s)
Items Donated By:

Kerry Adams
Mimi Bertrand
Krista Brack
The Chipyard
David Granoff
Alan Haft
Annie Jose
Macy's
Karen Melo
Laurel Porter- Gaylord
Red Sox Foundation
Elli Samuels
Savannah Wall – Athlete’s First
Thomas S. Clark – Arthur J. Gallagher Risk Management Services
American Girl Corporation
In Honor of the Thacker Family
Ben Ross Schneider III
Caroline and Stephen Sontheimer
Charles Watts
Chris Paine
Christopher Bass
Claire Hertan
Daniel Cotter
Dawn O Harkins
Elizabeth Drigotas
Elliott Gabriel
Fancy Fechser
Gary Goldstein
Greater New Orleans Foundation
Herman Kohlmeye
Heymann-Wolf Foundation
Jay Barth
Jennifer Bennett
Jennifer Sulla
Jo-Ann Hungerford
John Hutchins Clockmaker
Krefetz Law Firm LLC
Laura Hockett
Lincoln D. Paine
Lisa Pryor
Madeline Searle
Mary Ann Bass
Melinda Stanford
Michael Kan
Peter Kelly
Raula Hurley Fazli
Resnick Sullivan Foundation, Inc.
Robin Moriarty
Ronald Segal
Sally Yost
Sarah Hemphill
Stephanie Golob
Susan Eckstein
Terry Strom
Timothy Newell
William Hartranft
In Honor of the Seaman Family
David A. Bryant
Donations in Kind
David Grossman
Greg Gregory
Isabelle & Strom Thacker
Maria Balinska
Michael Moon
Monica & Michael David
Richard J. Dimeo
Robert D. Sullivan
Corporate Donations/Matching Donations
Apple
Ebay
QVC Partners in Giving
US Pain Foundation