My IOCDF News Letter Article Submission: Alexandra’s Journey to Recovery

 

Alexandra’s Leap of Fate;

A Journey to Recovery

I am the mother of an amazingly kind, witty, charismatic, 13-year old daughter, Alexandra. Until recently, Alexandra was plagued, for years, by extreme, debilitating OCD. As these years passed, slowly and painfully, she, and I, have endured innumerable manifestations of this horrific illness. She had become convinced, after nine years of inept treatments and constant suffering, she’d never be freed to, once again, walk amongst  the “land of the living” but be destined to forever endure a lifeless, fear-riddled, solitary existence. The apex of Alexandra’s extraordinary journey seeking freedom from her ubiquitous obsessions, compulsions and rituals is marked by her recent, hard earned, astonishing ascent from the subterranean bowels of the OCD Hell she’s inhabited for as long as she can remember to being catapulted back into the light of day to reap the rewards of a new way of living: one devoid of terror and filled with opportunities.  Little did we know Alexandra’s road to recovery would begin with the help of a relatively new form of technology known as an “app” and the aid of a highly specialized OCD specialist, hundreds of miles away?

Our journey began on an evening like any other.  Shortly before turning 4, I read Alexandra a bedtime story and off to sleep she went. To my astonishment, overnight, upon her awakening, she was different. Different as she began endlessly, verbally obsessing over peculiar topics. I immediately scheduled her with a pediatrician and exclaimed upon arrival, “I think Alex is having compulsions!” The freshly graduated MD was quick to correct my inaccuracy as ‘she was experiencing obsessions not compulsions.’  I, like most of the general population, had very little knowledge of Obsessive Compulsive Disorder. I vaguely recalled seeing Elizabeth McIngvale on Dr. Phil years before, but that was really the extent of my knowledge about OCD.

Unable to find her help at such a young age, Alexandra’s obsessions and compulsive rituals worsened.Trying to keep up as they switched, morphed, left and returned so fast, I felt as though my mind would simply implode! Her symptoms were ever-present, unless someone else was watching. Everything had to be “equal.” All furnishings were to be squared off against the walls with no spaces remaining.  It could take her 20 minutes to walk across our 8’x10’ patterned living-room rug. Alexandra also struggled with bouts of Trichotillomania, skin-picking, hoarding, and magical or superstitious thinking which caused her to do any number of repetitive behaviors.

At one point, she developed an intense fear of blood or anything related to blood (knives, guns, people’s tattoos, pictures on t-shirts, CD/DVD cover pictures, TV shows and commercials, etc).  Even the spoken word, sight, or anything colored red would catapult her anxiety into a state of panic. Not understanding how best to help her and not seeing any other options, I hid all the knives in the house. I cut her food when she wasn’t looking and basically tried to do whatever possible to protect her from the things which would trigger her crippling anxiety.

Throughout the following years, Alexandra received several evaluations and extended ‘therapies’ but her condition continued to steadily decline.  At only 7, Alexandra was even admitted into a well known pediatric psych unit for treatment but it, too, proved unsuccessful. Her formal diagnosis of OCD wasn’t until she was 7 and by 8, she was diagnosed with PANDAS. I wrote the following poem entitled “Mommy’s Cry’s,” venting the absolute frustration, sense of hopelessness and helplessness I felt being unable to stop my child’s merciless suffering.

Make this three-lettered evil go away

I just need to cry, fall upon my knee’s

Let me hold my precious child, comfort all her needs

Can’t anyone help us, please?

“You can’t touch me mommy

For surely I will die!

 

No mommy, no, don’t touch me,”

Echoes within her mind

…She cannot be touched

Any germs will kill her dead,

That is what she hears

Deep within her own head

 

Someone, please help her

She is inexplicably entangled

Wound tightly in a web

As if in an endless, awakened dream

And all that’s left are the silent screams!

A dream where all reality has been lost

A web of steel she has been embossed

 

And all which remains

Are those horrific thoughts

Which no matter the effort

Can’t ever seem to be tossed

 

My child I knew so well

Has somehow ventured into a deep mental hell

A place of darkness and dread

‘Can’t cross the blue line before the red!’

Where has this ever-present nightmare led?

 

All MUST be Equal or Odd!

Mommy,”The crack’s in the sidewalk will make you die!”

How could this not make you cry?

I listen as she scrubs off her invisible enemies

After which, her perfect fair toned skin is mutilated, raw and dry

Outside the bathroom door, I silently cry & cry

 

Help her Heavenly Father, I would often pled

“Make her life worth living; help her forget this tragic past

Prove her wishes and dreams for a future aren’t really dead”

But with each of the 9 passing year’s exponentially worse than the last

I must resign to silently scream inside my own head

 

What happened to my child?

I know she’s STILL THERE

Surely, the real she is not dead

It is just that she is trapped

Trapped within her own head

By the age of 9, Alexandra became convinced a neighbor child was deathly contaminated. As these fears quickly generalized, her almost 4-year battle with full-blown contamination fears began.  Ultimately, the pinnacle of Alexandra’s contamination fears became centered on her school.  Until recently, her decontamination rituals upon returning from school were seemingly endless.  Her showers took 4+ hours and caused her physical, psychological and emotional agony and anguish.  She had to scrub under her fingernails until her fingers were raw where there once were nail beds.  She washed her eyes and nasal passages with soap to the point of blurry vision, burning sinuses, and a loss of smell.  She violently brushed her teeth resulting in permanent enamel loss.  With Alexandra’s insistence, I decided transferring her to a new school could possibly eliminate these dangerous, self-harming rituals.  Although this strategy offered some temporary relief, her symptoms quickly worsened again.

Having been immersed in the OCD community and desperately seeking help, I learned of the Live OCD Free app. Still in beta testing, Live OCD Free was accepting applications for research participants.  I quickly contacted Dr. Mulcahy regarding the possibility of Alexandra becoming a research participant.  After describing Alexandra’s symptoms to Dr. Mulcahy, she felt intensive treatment was advisable. Given the severity of her symptoms, she was very reluctant for Alexandra to rely solely on the app for treatment.  After explaining, these intensive treatment options were considered “out of network” with her insurance policies refusing any coverage compounded by my inability to afford specialized treatment with a qualified professional or at a residential program, she agreed to get us started using the app.  At this point, we all took an enormous leap of faith, hoping the app would help.

After 3 months of periodic Skype sessions between Dr. Mulcahy and Alexandra and consistently (although highly reluctantly at times) doing her ERP assignments, I am ecstatic to report, she is now able to move about our home, touching everything freely.  Unable to enter her bedroom for months before the app, she is now sleeping in her own bed.  She is able to hug friends and family who were previously “untouchable.” Alex  can, now, also ride in the car (which has traveled back and forth to school) without showering.Additionally, her showers now take only 25 minutes…with no ritualistic behaviors. Her sense of smell has returned and her eyes are, no longer, bleary. In short, in exchange for hard work doing ERP,  her life is being returned.

Alexandra’s progress is truly astounding, and I credit it to our, finally, being provided a systematic approach to strategically attack Alexandra’s contamination fears through exposure and response prevention.  With the help of the Live OCD Free app, Alexandra has been able to be very independent with her treatment, taking more control over her OCD than I ever anticipated.  The app has also allowed us to work in a very efficient manner, using only periodic check-ins with Dr. Mulcahy via Skype.  Although Alexandra still has work ahead to regain complete freedom from her OCD, we are confident she will make a full recovery.

Alexandra and I will be forever grateful to the Live OCD Free app and Dr. Mulcahy for guiding us toward a life of hope and freedom.  I believe destiny and a true leap of fate are responsible for Alexandra’s remarkable progress. Seeing for myself how lives can be transformed with proper treatment, I am now considering a career change into the field of OCD therapy. We think Alexandra’s story offers much hope for others who are struggling and may, hopefully, play a small role in ending OCD’s tyrannical rein.  For this reason, s he wishes to share her OCD journey with others.  If you are looking for inspiration, please watch Alexandra’s first video chronicling her journey toward OCD freedom at WWW.LiveOCDFree.com and YouTube.com/LiveOCDFree.  We sincerely hope you or anyone you know who is struggling with OCD will join Alexandra on her quest to live OCD free.

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Submitted June 10, 2012

URGENT ALERT IOCDF: PSA’S URGENT ALERT

I IMPLORE EVERYONE: VIEW SHORT PSA
&
THEN DISTRIBUTE EVERYWHERE

PLEASE: DO NOT LET ANOTHER CHILD SUFFER AS HAS MY DAUGHTER DUE TO PANDAS/PANS IGNORANCE!

With support from leading Harvard Medical School psychiatrist, Dr. Michael Jenike, countless parents, advocates and members of the medical community with the International OCD Foundation (IOCDF) NEEDS to educate parents, physicians, school nurses, therapist’s, psychiatrist’s, etc. about infections which can trigger mental illnesses like Obsessive Compulsive Disorder (OCD) and much more.

PANDAS and PANS may result from untreated infections such as Strep, Lyme, Mycoplasma, H1N1 and Mono. Our bodies immune system is a complex cascade of mechanism’s to specifically protect against infection. One major component of this cascade is the production of antibodies which ‘attack’ invading infectious agents. However, in PANS, formerly PANDAS, these antibodies can sometimes mistakenly attack a specific area of the brain, in addition to the invading organism. The area of the brain which becomes attacked is responsible for regulation of emotions, behaviors, physical movements, etc. The result of this mistaken attack is often manifested by sudden, severe onset of OCD like behavior’s and/or other mental illnesses such as eating disorders, tics, etc..

In addition to OCD, signs of PANDAS or PANS can include a child who suddenly behaves like a much younger child or who suddenly cannot separate from a parent. Children may begin bed-wetting again or develop daytime urinary urgency, tics, and/or a worsening of motor skills or handwriting. Parents often say, “This is not my child. She was not like this yesterday.”

If anyone recognizes these symptoms developing seemingly overnight, along with a glaring change in the child’s personality and/or behavior, they should immediately have their child tested for the aforementioned causation illnesses. If positive, any active infections MUST be immediately treated with antibiotics in order to counteract these symptoms resulting in PANS. If tests are negative, perhaps, titer levels need be assessed.

Dr. Michael Jenike, of the Harvard Medical School and Chair of the International OCD Foundation Scientific Advisory Board, is featured in a separate video message that targets fellow physicians. Unfortunately, due to a lack of awareness, many doctors around the country do not know how to properly treat children exhibiting PANS/PANDAS symptoms. Dr. Jenike’s video PSA message speaks to doctors nationwide, and urges them to learn more about the disorder and how to effectively treat it.

“Often a course of antibiotics can eliminate the psychiatric symptoms and may save a child from lifelong mental illness,” says Jenike.

To learn more about PANDAS and PANS, please visit the IOCDF’s website, http://www.ocfoundation.org

Back From The Conference

Alexandra, Michael and I had such an amazing experience attending the convention in Chicago! I learned so much, my head is still spinning, thinking, analyzing, empathizing and planning for next years Annual IOCDF Convention in Atlanta!
After corresponding for so long over the internet, Janet and I were FINALLY able to meet during the convention. I was honored to be in the company of such a highly respected and dedicated OCD advocate and fellow adoring mother to an OCD sufferer. She, like I, are committed to raising OCD awareness the world over, one step at a time!

ocdtalk

Well, I arrived home after midnight last night, totally exhausted, my mind full of so much new information. My first International OCD Conference was a resounding success, and I hope to share some of what I’ve learned in some upcoming posts. The sessions I chose to attend ranged from various introductory talks regarding different aspects of OCD to advanced ones geared toward therapists and researchers. I took something valuable away from each seminar.

It was outside of these talks, however, that I learned the most. Connecting with sufferers and their loved ones, and hearing individual stories as opposed to theories, is what impacted me most. Stories of torment, heartache and loss, as well as those filled with hope, and even humor, touched me deeply. Though there were people there from all walks of life, we shared a common bond; the fight against obsessive-compulsive disorder.

As I said before, a unique…

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International OCD (Obsessive Compulsive Disorder) Foundation – OCD Awareness Week – Dare To Believe Contest

Dr. Natascha M. Santos, Licensed Psychologist, OCD and School Mental Health Specialist

Hi everyone,

OCD Awareness Week 2012 will be October 8-14. The IOCDF has included ways you can help spread awareness about OCD. Consider donating your facebook status or starting an email campaign. Check out the link below for more ways you can help support OCD Awareness Week!

This year’s motto:

Dare to Believe…..

together we can beat OCD.

Check it out!

Dr. S

International OCD (Obsessive Compulsive Disorder) Foundation – OCD Awareness Week – Dare To Believe Contest.

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OCD- Alexandra’s Journey to Recovery

My 13 year old daughter, Alexandra, has been diligently working with the Live OCD Free app for the past 3 months. During this short time, with much work and determination, she has achieved remarkable progress against her, previously omnipresent, OCD symptoms! Her OCD had forced her into seclusion, isolation, and painful 4+ hour ritualistic decontamination showers and had even left her unable to touch those she loves. Remarkably, Alexandra can now walk anywhere and touch almost everything freely. She can hug and spend time with loved-ones and friends without decontaminating. Ali’s showers are now only 25-minutes and do not involve any painful rituals. She continues to work to conquer her remaining OCD issues and anticipates, in time, a full recovery from the OCD which has plagued her since the age of four.

Alexandra wants nothing more than to lead a revolution against this insidious, debilitating monster we call OCD! To help others see how much hope there is with proper treatment, Alex is documenting her progression through recovery.

“Alex is truly one of the bravest young OCD sufferers I have ever met, and I will be eternally grateful for the gift of hope she offers.”
— Dr. Kristen Mulcahy

Live OCD Free App Now Available

 

 

 

New Options for OCD Sufferers, Therapists & My Daughter

Live OCD Free is a new, revolutionary mobile therapy application which brings Exposure and Response Prevention into your own hands or the hands of your patients in a new and highly effective way. Currently, the app is available for iPhones, iPod Touch and iTablets and will next be launched into the Android market. The Live OCD Free app makes homework easier, holds patients accountable, and enables therapists to track and analyze their patient’s progress. The app can be purchased at the iTunes store for a one-time investment and more can be learned on the LiveOCDFree.com website.

Live OCD Free is ideally suited to help both individuals (adults and children) and professionals alike be more efficient and achieve faster results. Live OCD Free helps individuals and therapists to be more efficient by assisting the OCD sufferer in designing a uniquely personalized Exposure and Response Prevention treatment program. If the OCD sufferer is working with a therapist, all the data stored in the app can be easily emailed to the therapist thus enabling an even more fine-tuned treatment plan.

Live OCD Free helps children and adults gradually face their fears by creating a series of exercises or challenges to practice on their iPhones, iPod Touch and iTablets. These exercises empower users to resist the urge to give in to compulsions, tackle excessive or intrusive thoughts in a manageable way, and reduce anxiety in just a short period of time.

The Live OCD Free app features:

• An individualized ERP program

• Assistance working through exercises
• Reminders to practice
• Goals and rewards
• Prerecorded and customizable motivational messages
• Relaxation and mediation techniques
• A comprehensive user’s guide
• Tutorial videos
• Progress reports to share with therapists

For Children, there is the Live OCD Free Worry Wizard. It is a fun and empowering game with the goal of achieving victory over the “Worry Wizard.” It contains OCD specific music, graphics, and inspirational quotes from other children with OCD.

Live OCD Free is now available in the iTunes store for download on your iPhone, iPod Touch, and the iPad and has been developed by Dr. Kristen Mulcahy, Director of the Cognitive Behavioral Institute in Falmouth, Mass.

YouTube Preview Tutorials are also available:

• Live OCD Free Kids Tutorial.mov – YouTube  http://youtu.be/eLYa65CuBv8
  A tutorial with narration and music, outlining the basic functionality for the Kids version of the Live OCD Free App.
• Live OCD Free Adult Tutorial.mov – YouTube  http://youtu.be/5T63lNyjFb0
  A tutorial with narration and music, outlining the basic functionality for the Adult version of the Live OCD Free App.

*Promotional Code for Therapists: Interested in reviewing or previewing Live OCD Free? A limited number of applications are available for free download.

♥

In closing, this is the most exciting new option for OCD sufferers and therapists alike.  The peer reviews from our most renowned OCD experts internationally are universally impressed with this app!  

My daughter is involved with this application and its developer Dr. Kristen Mulcahy and will  be speaking for and representing the app at the International OCD Foundations Annual Meeting in Chicago in July! Is this not amazing? My daughter’s suffering has been so severe for so long and now she will be dedicating her treatment to this application on her iPhone, serving as its official spokesperson, conducting interviews and will be video blogging on the LiveOCDFree.com website for others to follow her lead!

 

Possible New Treatment for OCD “Checkers”

New Therapy for OCD In Field Testing By Rick Nauert PhD Senior News Editor Reviewed by John M. Grohol, Psy.D. on April 11, 2012 Individuals who suffer from obsessive-compulsive disorder (OCD) are often plagued by incessant self-talk that leads to compulsive checking. Although the thoughts may be slight — such as checking to be sure the gas stove is turned off — individuals can become debilitated as they become locked in a vicious cycle of fear and doubt. Canadian researchers at Concordia University are now testing a novel approach to treatment for compulsive checking that they believe could mean vast improvements in the quality of life of countless individuals. “For years, the best way to treat compulsive checking in OCD sufferers has been through a difficult therapeutic process known as exposure and response prevention, or ERP,” said Dr. Adam Radomsky, a professor in the Department of Psychology. “By facing their worst fears repeatedly until their anxiety declines, patients learn to diffuse their hypervigilant checking responses — in theory.” In practice, however, this type of treatment often results in patients quickly discontinuing the therapy. “Refusal rates for ERP are unacceptably high, which is why we need to develop a new and refined treatment that specifically works for compulsive checking.” The new treatment intervention builds on previous research which found that individuals with OCD who compulsively checked certain aspects of their surroundings did so because of an inflated sense of perceived responsibility. “If I don’t turn off the stove, the house will burn down,” is a plausible thought that can quickly devolve into an obsessive cycle of checking and re-checking, and can even result in an inability to leave the house. Yet, as shown by Radomsky’s previous research, performing these seemingly senseless repetitions actually results in a loss of confidence. Radomsky believes that modifying the patient’s inflated feelings of personal responsibility and reducing predictions of seriousness of anticipated misfortunes, can turn the cycle around. By placing the emphasis on how people think rather than on what they do, the intervention targets people’s faulty beliefs about how responsible they think they are, about their own memories, and about the dangers that they perceive. Treatment milestones include normalizing inflated responsibility — through restoring confidence in memory — all the way to reducing self-doubt and guilt. The goal of the intervention is to improve the way in which individuals perceive themselves, and the world around them. Developed in the lab, Radomsky’s research is set to show real promise in the field. “For me and my team,” said Radomsky, “this work will capitalize on all of our previous experimental research and lead us to testing a new intervention based on our previous findings. It’s our hope that this work will lead to a more substantial test of the treatment, which in turn could influence how people treat OCD in Montreal, in Canada and beyond.”

Thank You to the Global OCD Community!

I’m just going to get it out there, here and now. Parenting a child with OCD is exhausting. I, actually, still feel guilty to even write such a statement about my own child. We all knew, as we became parents that it would, at times, be an effort-filled endeavor for many years to come. I know I, personally, accepted this fact readily and even excitedly. Was I simply being naive or was it that I had no idea what was to come?

I ask myself, how I can possibly complain about how indescribably difficult it is, every day, 365 days, each year caring for and sharing a home with an OCD adolescent. I’d say to myself, isn’t she the one who’s really suffering? Isn’t she the one who must complete these seemingly endless rituals and contend with those ever-present, illogical thoughts? Isn’t she the one who must take the medications and cope with the side effects? Don’t I have it easy compared to her? So, how can I reasonably profess my exhaustion at days end without feeling a sense of guilt?

As the years of raising my daughter, Julia, alone have passed and her illness has contorted into it’s ever so many presentations, I’m only just beginning to understand that it’s not only alright to be exhausted its imperative to recognize how I’m feeling. I must admit, always, over these past ~9 years, I thought I was to forever be my little families rock, never allowing myself any attention. I reasoned, any strength I take to do for myself depletes the little I have left within to contend with Julia and her little sisters daily care. But by solely focusing on their needs, Julia’s doctors, schools and day-to-day living, the precious moments, days, weeks, months and years still continue to pass… indifferent to my plight.

I have recently “come-out” with my story through blogging and joining support groups for caregivers and sufferers, alike. I have learned so much from others on both sides of the OCD fence through these faceless interactions.

By actively involving myself in dialogs with OCD sufferers, I’ve managed to see a more well rounded view of this disease from both the young and old. They have been patient enough with me to carefully explain how life is perceived through their personally OCD clouded eyes. This insight and willingness to help me understand now allows me to better communicate with Julia and better be inside her head while she’s trapped within this ever-sticky spider web disease.

Having only spoken of such matters with medical specialist and a few close friends over these years, I have just realized I was severely lacking one crucial element. The element of compassion and understanding to only be derived through a community who knows these struggles first hand! Through my interactions with parents from around the world coping with raising an OCD child, I’ve gleaned yet another perspective all together. To my surprise, other parents so freely spoke of their confusion, frustration and exhaustion. Meanwhile, the others listened, asked questions and comforted them. They gave them, as well as myself, “permission” to be real to real feelings about their personal struggles. It’s been through these experiences that I now realize all I’ve been missing.

For all of you out here facing the day to day’s with your children, I implore you to reach out. Reach out to people who “get it.” You will gain a new rejuvenation. A new way of releasing yourselves from the ties that bind. A new way to comfort and console yourselves. We all have so much on our proverbial plates, let the strength of the many provide the support to those of us who really need it, whether we recognize it or not. You may be surprised to realize that you can, conversely, help others by way of your experiences, as well. It’s like a balancing of nature. It’s too much to bear alone. Remembering, OCD is a families disease. A disease where all involved need care and compassion. This is how we can each awaken to every new day and lay our heads down each night with the empowering knowledge that we are not alone.

Mothers Letter To Suffering Daughter

My Dearest Julia,

We are going to do things differently. We are going to communicate. I am not going to allow you to give up on yourself. You are a courageous, smart, loving, wonderful person who has a big problem but a problem, believe it or not, which has solutions. You must be willing to, at least, try. I know you don’t feel courageous but courage is not the lack of fear but how you react and cope with the fear.

I know how impossibly difficult it is to discuss your OCD so I want to correspond with you via email until we are able to have a personal, face to face, dialogue. I am only trying to help you the best I know how. I have extensively researched, spoken to experts and corresponded with countess others suffering from OCD. From all this information, I’ve learned a lot and have come to some conclusions.

I realize you feel helpless against your OCD, the intrusive thoughts and need to act upon them. This I now, more fully understand. You must try to understand, too, that I don’t see things through the eyes of OCD so I upset you unintentionally.

I’d like to begin with what I have learned about the brain and OCD. It is not your fault you have OCD. You, and all OCD sufferers, brain chemistry and structures are different than people without OCD. Put in simple terms, 2 parts of the brain are bound together where there should be space in between. Your brain sends a signal and it gets stuck or locked and can’t be further processed. Then that thought gets amplified over and over in a non logical way. It gets stuck or locked. The way to make it better is to re-wire the connections in your brain. I can show you pictures of brain scans proving this fact.

Just so your clear, obsessions are thoughts and compulsions are the actions you take relating to the thought.

Remember when your sister, Carmela, could not speak because the speech part of her brain was damaged? The only way for her to be able to speak was to re-wire the connections around that part of her brain. The same is similar for you. You have to re-wire those connections so that the thoughts and actions will no longer be “locked.” I have learned there is more than one way accomplish this task. As you know, the most popular and most used is exposure therapy. But, there are also other ways which offer really good results.

One person describes OCD this way, “I compare OCD to a spider spinning a web at warp speed. The center of the web is the triggering event. Every intersection of the web is another possibility OCD creates in my mind, and it can grow infinitely. Feeding the spider by acting out the compulsions only makes her spin faster, until the web is so large, the spinning so out of control, the situation so infinite and sticky that all I can do is collapse in a sobbing heap of submission.  How do you stop when you get to that point? How do you know what’s real and what isn’t?  I want to stop being afraid. But I’ve always been afraid, though the crippling nature of contamination fear is new to me. This is not the first time OCD has prevented me from enjoying life, but it is the most severe. It is hell. I just want my life back more than anything in the world.”

She also says, “I f’—ing hate this disorder. It takes everything… I deeply resent the fact that I have to struggle painfully with shit that is completely normal for everyone else.”

That is all for now. I am going to email you often and I expect some response each time. I adore you and want only what is best for you. Sometimes, I may say things you don’t want to hear as you may to me. The point is to communicate. Since your not in any kind of therapy program, we must create our own. This is non negotiable. It will be difficult at times, and I will be here for you every step of the way.

I will listen and respect you at all times. There will be things I am going to require, things for which you may not agree but they will be required, none the less. If we work as a team it will be much better than if we don’t. You must remember, though, I am the mother and you are the daughter. I need you to trust me. And, things in our lives will improve.

Your loving mother,

Momma

Where Do You Go When There’s No Where To Go?

As a parent of a child with severe OCD, I can attest to the difficulties life presents. It’s a never ending cycle just trying to keep any semblance of normalcy within the family. Now, compound this dilemma with a child who’s many past therapist have essentially given up on any chance for her recovery leaves a parent feeling hopeless and desperate. The endless quest for someone to help her recover,even in the smallest of ways, has become a heart breaking endeavor. I’ve contacted the foremost experts in the field, all over the country, and received several referrals to local therapists and treatment programs. One after the next states, “we don’t accept insurance.” I contacted, again, the leading expert at Duke and he stated, “Am sorry to have to be the bearer of hard news—I wouldn’t organize services for kids that way if it was up to me—but just about everyone in the specialty clinical framework is out of network and no one accepts Medicaid.” How can it be true that the most ill children who are suffering so terrible are not accepted for treatment unless you can pay for it out-of-pocket? Everything you read says how critical early intervention is for children with OCD yet they are systematically eliminated from quality care even though they are covered under major insurance policies.