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my life with OCD/PANDAS


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My Life with OCD/ PANDAS

Beginning of memories to age 12/ 7th grade

• Land Before Time, “Step on a crack break your momma’s back,”(avoided cracks at all cost)

• Check to make sure ALL doors were locked every night

• Verify no one/thing was in my closet

• Check for I don’t know what under my bed

• Spend 30 min straightening sheets and pillows on bed

• Counting anything in sight (train cars, power lines, floor/ceiling tiles, steps I took, breaths I took, you name it………………. I counted it)

• Paranoid about family member’s safety(triggers: coming home later than said, plane trips, road trips, not answering their phone)

BUT:

People with OCD are not stupid…………rather……….unbelievably intelligent.

Think about it………………….. Our brains are on over drive trying to deal with everyday life, obsessive thoughts, compulsive actions, extreme uneasy feelings, trying to appear normal, dealing with the façade of appearing normal, and the list goes on.

7TH GRADE

Up to late January of my 7th grade year I was managing to deal with all of the above and keep low radar. I knew something wasn’t normal but it was easier to hide it than face it.

Strep Throat

In late January I was diagnosed with a severe case of Strep Throat……..almost instantly, everything that I was so good at hiding exacerbated and branched off into more extreme thoughts/ obsessions.

Solution

I was always a happy kid with a permanate smile on face. That all changed with a bad case of Strep. Fortunately my pediatrician was knowledgeable in this field and almost immediately referred my parents and me to Texas Children’s Hospital in Houston, TX, where I was formally diagnosed with severe OCD.

1st Therapy treatment/ 7th grade – age 23

Cognitive Behavioral Therapy w/ Texas Children’s

Upon diagnoses I began to undergo extensive cognitive behavioral therapy (my definition: become aware of the fact most of thoughts you are having are based on reality)

 

Intensive therapy throughout junior high and high school

Relapse in first year of college and continued regular therapy through age 21

Used the tools I learned through this therapy up to age 23

2nd Therapy Treatment/ October of 2010

Once again experienced a bad case of strep and had a “relapse.”

Began ERP (exposure response prevention) Therapy.

Most difficult therapy I have every experienced but the most effective and fast acting!

In the beginning I went to Houston for therapy twice a week………………then once a week………..then once a month…………then every three month. Although my appointments decreased my ability to use the tools I learned increased, as well as every aspect of my life.

2011

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections),

From January 2011 – September 2011 I had Strep Throat four times. PANDAS had always been mentioned as to why I had a sudden “on set” in 7th grade.

During my last case of Strep in Sept. of 2011 I scheduled an appointment with a local ENT Specialist. When I called to schedule I was at home with Strep and scheduled for three weeks later. When I went to my appointment my strep test came back positive AGAIN! With that, the ENT scheduled surgery to have my tonsils and adenoids removed.

NOVEMBER 16TH – SURGERY

NOVEMBER 17TH – 18TH – RECOVERY

NOVEMBER 19TH- 23RD (can’t be exact)

At some point after my surgery I realized I wasn’t straightening the sheets on the bed, wasn’t counting how many times the air conditioner began to run, didn’t have to have an even number of pillow……………ect……..

NOVEMBER 24TH/ THANKSGIVING

By Thanksgiving I was able to eat solid foods and was up to visiting with family that had come down from out of town. This was the first time I was able articulated the immediate changes that I had noticed in my OCD.

DECEMBER 3RD/ MY BIRTHDAY

Prior to surgery I was on Zoloft (to reduce OCD symptoms) & Focalin (to help me focus). I Started to notice, that along with decreased OCD symptoms I was becoming lethargic and unmotivated.

MEDS

I decreased my meds and by February 2012 was off completely. (With help from my physiatrist)

NOW

My OCD symptoms are almost not existent. I still catch myself counting…………but now I can stop without feeling uneasy or triggering a panic attack that leads to physical illness.

 

UPDATES SINCE SUREGERY

I coach gymnastics and added 16 new kids to my completive team program

Purchased a portion of the business that I work and am now a small business owner

Kept my position as head tumbling coach at the Gym and successfully run my own business

Began a relationship with a great guy

My business started working with the Autistic School in my town

Recently all kids whose parents were not able to afford my gymnastic class, I have found and secured a sponsor for

Created a team for my home town’s Annual Walk for Autism

AND SO MUCH MORE

 

 

MY POINT

12 YEARS AGO I WOULD HAVE NEVER THOUGHT THAT A LIFE LIKE THE ONE I AM LIVING NOW WAS POSSIBLE FOR ME AND MY OCD.

THE ROAD TO RECOVERY WAS THE MOST DIFFICULT CHALLENGE I HAVE AND BELIEVE I WILL EVER WILL EXPERIENCE, BUT IT WAS BEYOND WORTH IT.

I WAS FORTUNATE THAT HAVING MY TONSILS TAKEN OUT PRACTICALLY ELIMINATED MY OCD, BUT HAD IT NOT………………………………..I WAS ON THE PATH TO SUCCESS AND I HAD ACCEPTED AND WAS CONTENT WITH WHO I WAS AND WHAT I HAD.

 

LOOKING BACK

A Dr. once discussed the possible options I may have if my OCD was truly set off by Strep. I could take antibiotics at a very low dose in hopes that it would eventually kill the strep bacteria that I was carrying.

The thought of living without OCD terrified me! WHAT WOULD I DO WITH PEACE OF MIND!

NOW I KNOW…………………………………GIVE HOPE, COURAGE, AND STRENGTH TO ALL WHO ARE IN THE SHOES THAT I ONCE WORE.

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Ashmcafee --

 

Thank you for posting your story. I see many, many parallels with my DS who, diagnosed with OCD at age 6, began PANDAS treatment at age 12 and now, at almost 15, is like a different person in terms of functionality, happiness and looking forward to his future. I couldn't agree more with your take on this topic, and I hope others who've been confronted with and tried to deal with "regular OCD," if even for an extended time, will find some inspiration here and seek out the possibility that medical intervention may, in fact, succeed where psychiatric interventions have failed.

 

All the best to you in your life journey moving forward!

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Thank you so much for posting this! I am so glad to read of your recovery. It very encouraging to read this.

Just out of curiosity, if PANDAS was mentioned as the cause of your sudden onset- did anyone treat it as such? If not, do you know why?

Again, thanks for taking the time to post here.

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Thank you for posting! I have an eight year old son who has been dealing with tics and OCD for almost two years now. Earlier this week he told me...'Mom, I just realized that I'm a boy with tics who still has a normal life.' Broke my heart...he just wants to be normal. I lie awake at night worrying about what his future looks like; will he got to college, will he get married or will he someday be a captive to this illness? It gives me hope to hear a story like yours. Thank you for sharing.

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  • 2 weeks later...

LOOKING BACK

A Dr. once discussed the possible options I may have if my OCD was truly set off by Strep. I could take antibiotics at a very low dose in hopes that it would eventually kill the strep bacteria that I was carrying.

 

 

wow, great story!

 

I do wonder why this doc though antibiotics in very low doses would do the job though, if anything, it would be antibiotics in high doses.

 

I would think very low doses would just breed resistance. After all, the weaker bacteria would be killed off, but the stronger bacteria might survive to replicate-->resistant strain of bacteria.

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  • 1 year later...

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