Our Story, A Brief History

We began this journey when Julia wasn’t even four. She is now 12 ½. Over the past years, believe it or not, it has been so, so much worse than it is currently. I believe that her PANDAS was the initial instigator. The symptoms of PANDAS are too numerous to express at this time. The PANDAS episodes, caused by her a-typical strep infections, began to wind down by about age 9, ~5 years later! Therefor, for the first several years, her symptoms included 6-8 PANDA episodes annually which appeared to simply run back to back, severe OCD, as well as, constant, gruesome bizarre and non bizarre auditory and visual hallucinations.

These hallucinations plagued her endlessly. None the less, I insisted she attended school beginning at age 5. We coped with these “invisible intruders,” somehow, and then they mysteriously disappeared after~ 4 years.

When she turned 6, she began making strange noises accompanied by jerking movements and tightening of her muscles to the point of often dislocating her joints. After many neurological tests, it was confirmed by her neurologist she had Tourettes Syndrome. Now, on top of the endless rituals, PANDA attacks and the invisible invaders, there was yet another illness identified. The Tourettes took a lot out of her physically and the PANDAS and OCD took a lot out of her both physically and psychologically. Although she still has symptoms, at times of great stress, she has learned to control the Tourettes and it is no longer an issue, either.

The germaphobia began to rear it’s wicked head when she was about 8 years old. Initially, she began by believing certain people we knew well were contaminated. The germaphobia still exists to this day yet in ever-changing forms. Her primary mortal fear is contamination from her junior high school.

Beginning at ~age 8, as well, she started refusing to throw anything away. When I say anything, I mean everything! Everything had deep personal meaning. This was to become an overwhelming case of hording! This inexplicable condition is bewildering at the very least. Her bedroom became an edition straight out of the television show! The hording lasted a couple of years and then one day, she just cleaned it all up and it’s never been an issue again.

During these years, she missed quite a lot of school. On top of all we were going through, however, she managed to maintain an A,B average. I’ continued seeking more effective treatment for her as she was on medications and in therapy but the two proved useless.

Enabling: She’s now in the 7th grade. When in the 4th grade, I steadily ceased all enabling tactics. She went from A’s and B’s to straight F’s. Because her year end test scores were so high, she managed to pass the grade. That same year she had to be admitted into a pediatric psychiatric ward for 2 weeks. Soon after which, I began allowing for some enabling. Even with her ever-present symptoms her grades began to climb. In one term, she had straight A’s and almost no absences!

During early 5th grade, I again began to remove any enabling, slowly, and she became close to catatonic short of the OCD and germaphobia. Her Tourettes exacerbated and she stayed in her “sterile” bedroom and cried…all the time. I never got to see her. She had no social life and remained completely alone. It was utterly heartbreaking. She continued with her failing grades. Again, after several months of “solitary confinement”, I again allowed some enabling. Enough that she felt as though she could leave her room. Her grades immediately improved, she was more involved as a family member and she began speaking to friends on the phone.

When she was 9, again I began to cease any enabling. She, yet again, found solace in her bedroom where all was “sterile.” She went back to the aforementioned state until I began to allow certain enabling tactics. The tactics included things such as, now allowing her to spray highly diluted Lysol on the carpet, door handles and other objects identified as “contaminated.” I would wash my hands if asked. I would answer her, every time, I’d used the bathroom confirming to her that I’d washed my hands.

Although still exceptionally debilitated and run by her OCD, with some enabling, she has managed to miss less than 2 days of school each year, has a friend, makes straight A’s and can move about the house freely, as long as she has her Lysol and every ones shoes are off.

In conclusion, as the many years have passed some constants remain: 1) Many of her varying illnesses and symptoms have each, in time, dissipated. 2) When all “enabling” is removed, the consequences have proven severe. She has hit rock bottom many times and never once ceased to have RA. 3) When some level of enabling is afforded, her grades skyrocket, she socializes and can be a part of the family.

I am afraid. I am afraid to enable and afraid to not. She is the most remarkable, kind, smart person one has ever known. It’s just that she’s really ill. She’s really ill but able to “function” with some enabling. She expresses, “she is miserable from her OCD,” her “OCD is incurable because it has total control and there is no hope.”and that “I just don’t get it.” She lovingly thanks me for helping her “hold it together.”

I just don’t know where to draw the line.

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About LISA DOUGLAS

Foremost, I am an OCD awareness, treatment and long-term recovery: advocate, spokesperson, consultant, supporter, and educator. I am the mother and sole provider of care for an amazingly smart, witty, charismatic, 13 year old daughter, Alexandra, who was severely debilitated by OCD. The apex of Alexandra’s journey to simply be like ‘normal’ people is marked by her recent, astonishing ascent from the subterranean bowels of OCD Hell she has inhabited for as long as she can remember, to becoming freed to, once again, walk alongside and among the “land of the living.” Over these past nine years and all the realizations I’ve made regarding the mental health system, its profession and providers, society’s stigmas, discrimination, accusations, insurance debacles and all else involved, I’ve been making belief, someone, someday will help my progressively declining child who’s Y-BOCS consistently remained between 34 and 40 for the past 6 whole years! Until this past April, she and I have been on an endless quest for proper treatment which would help to alleviate and, ultimately, release her from the incomprehensibly horrific, all-consuming, self-harming, isolated purgatory from which she was ever-increasingly, perpetually trapped by her obsessions and rituals. Earlier this year, our seemingly last hope for help was to be an extended stay at Rogers Memorial but after months of fighting with her 2 insurance companies over denying coverage for admittance, I was at my wits end, again! Having immersed myself into the global OCD community for many years seeking help, advice, guidance, etc., I came across a post seeking beta study participants using an app for ERP. Immediately, I applied for my daughter. The director/doctor was very hesitant as Alex’s OCD was so extreme. However, with a lot of persuasion, a remarkably wise and kind doctor, as well as, an enormous ‘leap of faith,’ we began using the app from LiveOCDFree. She has been diligently working with the Live OCD Free app for the past 3 months. During this short time, with much hard 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 or breathe the air of 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, and I, want 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, she and I are documenting her OCD recovery process and history through Facebook.com/ LiveOCDFree, Twitter: LiveOCDFree, YouTube.com/LiveOCDFree, OCDKids.wordpress.com and LiveOCDFree.com. Please, join and /or follow her journey so you can be aware of OCD, too. View all posts by LISA DOUGLAS

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