Monthly Archives: January 2012

Please Help Me Understand OCD

Please help me understand OCD. I have a 12.5 yr. old daughter who spends every waking moment obsessing and compulsing. She is convinced her school is       contaminated. This is her whole life. For example, she takes showers that last hours and hours. Over & over; she scrubs herself raw, until her fingers bleed where there used to be nails and nail beds. She scrubs her eyes and up her nasal passages with soap to the point her vision is blurry all the time and her sinuses burn continuously. She violently brushes her teeth to the point of permanent enamel loss. She scrubs her tonsils and uvula until she gags or vomits. She scrubs her scalp and hair to the point it’s breaking at the roots and falling out. She eats toothpaste, which is toxic, to kill the germs in her stomach from eating at school. She dreads school because of all the horrible decontamination rituals afterwords.

She gets angry if I bring up the topic of OCD and cries that I don’t understand. She won’t take her medicine. She hates therapists. Most of all she is convinced there is nothing or no one to help her get better. She knows she’s doomed to a life of misery and expresses that the way she has to live is just too much to bare. She is angry that others can just be normal.

Please offer me some insight, advice, personal stories, suggestions or anything at all to assist me with her plight.

Thank you in advance,

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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.


What Constitutes Harmful Enabling?

The pivotal question still remains, how is the line drawn between enabling meant to keep my 12 year old daughter, Julia, out of a spiraling hysteria where what little is stable all collapses and enabling which is causing more harm than good? Many experts agree, enabling reinforces the sufferers symptoms. However, they don’t detail exactly what constitutes enabling, specifically. Are there not many levels of enabling?

  • Is great harm caused if Julia needs me to wash my hands because they’ve become “contaminated” as I accidentally brushed by the shirt sleeve she wore to school? Knowing if I don’t, she will watch every move I make from then on and all in which I touch, by default, becomes contaminated and, thus, requires ritualistic sterilization?
  • Is great harm caused if she must Lysol our car because she rode in it after school 8 weeks ago, has not been in it since, and “knows” it is still contaminated? Should this be allowed? She won’t get into the car until decontamination is complete. Should I physically force her into the car? Thereby, disallowing enabling?
  • Is great harm caused if I don’t physically remove her from the horrible “decontamination shower” rituals after every school day? They go on for hours, but she can’t seem to do it differently. I have to make it stop but don’t know how. I feel I’ve tried everything! What level, if any, of enabling is this?
  • Is great harm caused if we use the supermarket checkout isles 3, 7, or 8 if she is currently contaminated from that day at school and those are the “contaminated” isles or use checkout 2, 4 or 6 if she is “clean.” Because, if we use 3, 7 or 8 when she is “clean” then she will no longer be “clean” because she has used them at some point in the past while “contaminated” and thus be subject to compulsively reengage in her endless shower routine to rid herself of the invisible contamination?

Due to her RA, speaking to her about any of these issues catapults her into a crying frenzy. She repeatedly states, “Mommy you just don’t get it, you just don’t understand!” “You just make it all worse when you talk to me about my OCD,” Some experts profess, if you can’t get the sufferer to stop then you must try to disengage from the sufferers activities and allow the sufferer to continue their rituals on their own. Thereby, by disengaging you have a chance to maintain your own sanity.

But, as said in the prior Enabling post, without any form of enabling Julia looses her ability to cope all together and her grades plummet, the symptoms multiply to levels which are even more impossible to express, and the world in which we inhabit seemingly ceases to exist. We become victims of the victims. Therefore, the initial, pivotal question still remains. Where does one draw the line?


Enabling, The Invisible Fence, Germaphobia

Caring for a child who has a severe mental illness is exceptionally difficult. Conducting daily life with a child suffering from OCD, who appears perfectly normal to the outside world but is plagued by behaviors which are illogical and debilitating, seen only by those closest, is nothing short of a seemingly hopeless task. The reality is, along with the child afflicted with OCD, it is the entire family, or the single parent, who gets mired up into the child’s irrational world. When it comes to different levels of enabling; where do you draw the line between maintaining any semblance of peace verses total chaos? What degree of enabling is acceptable?

My daughter of 12 has severe OCD with exceptionally debilitating germaphobia. Among other issues, as with many childhood OCD sufferers, she is morbidly germaphobic of her school. The rituals to rid herself of the germs supposedly obtained at school are simply horrid. She believes she and all related must be decontaminated after school every day. These rituals are seemingly endless, take hours to complete and cause her physical and emotional pain. However, any deviation from these rituals catapults her into a ostensibly eternal, stress induced frenzy. Having dealt with the myriad of her OCD symptoms since before the age of 4, I’ve learned the hard way that there are no simple answers to the “enabling” question. To add insult to injury she also has recovery avoidance which literally leaves me alone to fend for our lives. I am continuously seeking solutions for her recovery. The bottom line, however, is that I’m on my own, everyday, to make the “fence” decisions in an effort to grapple with her monstrous malady.

When is any level of enabling acceptable? Dealing with OCD is hard enough but doing so within the multifaceted phases involved with childhood and puberty can be an exceptionally discouraging endeavor. Childhood OCD is certainly unique in many ways from adult OCD. The invisible fence the adult must teeter, between whether to enable or not, is infinitesimally thin. However, my experience has proven, one side of this phantom fence allows for some modicum of enabling and the other side allows for none. I must say that I enable her the very least I feel possible at the particular time. However, my experience has proven if all enabling ceases, her grades plummet from A’s to F’s and inpatient psychiatric wards may well, again, be part of her immediate future. Conversely, while the other side of this illusive fence professes to not allow any accommodation to the OCD as it shall certainly propel the disease yet further into the deep chasm of the OCD inferno. The conundrum is simply that the middle of the fence seems to get more & more miniscule, and at times, appears non-existent.

Therefore, one must ask, is there a middle ground to enabling or is it simply an invisible fence I must teeter upon minute by minute?


OCD Recovery Avoidance

My daughter has had OCD since before turning 4. She is now 12.5 years old and I’m just now learning about this thing called RA, recovery avoidance. But how can this possibly be? Surely, it’s not for my lack of seeking help from countless doctors, neurologists, psychiatrists and psychotherapists. I personally dedicate my life to her recovery. I researched on, what I thought to be, comprehensive internet searches over these many years. From the age of 4, I began taking her to “experts” in the field of childhood mental disorders. Time and time again, she and I were carelessly dismissed. I was told repeatedly, “she is fine, there is nothing wrong with her.” But how could this be? Her obsessions and compulsions were profound! She had to say and do things which were nonsensical, sometime harmful, endlessly!

What took 7 years, until she was 11, was for me to realize that my child was masking all symptoms and denying they even existed to all the specialists as they carried on their “private sessions.” Even from such a young age, she was afraid, afraid to admit these issues plaguing our lives.

When she turned 11, after much persistence, she was accepted into a “prestigious” OCD Cognitive Behavioral Exposure Therapy program at Duke University in Durham, North Carolina. Every week we would drive the hour there and the hour back for her to participate in the treatment process. Finally, for the first time, she began to speak relatively freely to the doctor about the types of symptoms she experienced on an ongoing basis. Although she was willing to tell some of what she was and had endured, she was still holding back the severity of her illness. This too was to be her first opportunity to be professionally evaluated and have the proper tests administered to determine her OCD severity scales. Even with her guarded answers, when the results were soon revealed she was, none the less, still categorized as having severe OCD.

Hooray I thought, I have finally broken through the barriers of providing the source of treatment for my suffering child. I thought, now we will bravely be able to take on this next, difficult task of exposure therapy. There is at last hope, hope for my precious child. Week after week went on. Back and forth we drove but the more agitated she became. Her MD/PhD therapist explained, “she is not ready for exposures, I must first take time with her to prepare her for the upcoming tasks. They then began “talk therapy” or so I thought. As I patiently awaited her to complete each weekly session it became more and more apparent that she was getting worse not better. As I expressed my concerns to the doctor he appeared more frustrated than accommodating. After months of “treatment” with no improvement in sight he called me into his tiny office in the little gray room with cinder block walls to state, “she doesn’t want to get better,” she just isn’t ready” and worst of all, “she isn’t suffering enough yet to make her want to seek treatment.” He went on to say, “I will remain her doctor and prescribe her medications but further treatment is futile.”

My heart broke at that very moment. What does he mean she’s not suffering enough! How dare he make such a comment. She spends every waking moment consumed by the thoughts and rituals. There is never a break, never a rest from this dreadful disease. I wanted to scream, please, oh please, do your job and make her better. We left that day from Duke no closer to recovery that we had been since she was 4. Where was I to go, what was I to do? Again rejected, as though none of them, not a one has a clue.

Now, I’ve discovered RA (recovery avoidance). I now understand, that the experts agree, a certain percentage of OCD sufferers experience recovery avoidance. They simply refuse to take the necessary steps required to release themselves. Its thought that sufferers are either too afraid to do the tasks necessary due to their mortal fears associated with their OCD. Whether their fears are based in reality or not, the fear they experience is their true fear and high walls can be built to create a falsified illusion of comfort and safety in a vain attempt to protect themselves. Or, the other rational for RA is simply called Incentive Deficits. This is where the sufferer does not have enough incentive to allow treatment. We all thrive on incentives to drive our actions throughout life. Wouldn’t the knowledge that treatment will work be incentive enough to release this debilitating illness from ones own mind? I’m so happy to finally be able to give it a name. So at least now, I have two possibilities from which to choose to explain her seemingly inexplicable behavior.

I have since come to understand, or quasi understand my wonderful yet tormented child’s predicament. I believe she allows such suffering and pain to continue because of both factors. She fears treatment because she believes no human will ever be able to help her. She fears exposures as she is convinced crossing her imaginary lines will surely kill her or someone she loves. Most notably, however, I believe the most profound reason for her RA is that she knows nothing other than OCD! Having suffered since she was four years old, this is the only life she knows. She has no memories from which to rely. Memories of better days, happy thoughts from a better life are so far from her scope of reality that she continues to spiral further down the OCD drain.

What is the answer, is there someone to blame? Why was I never told of RA? Why did the doctor just turn her away? I am in a quagmire from which I see no end. Can anyone out there chime in?


She Tripped & Skinned Her Knee

Today’s newest dilemma: Doesn’t this happen to all children? Isn’t the solution fairly simple? Comfort them and put a band-aid upon the wound, right? Not necessarily if your child has OCD and a horrific fear of germs. Additionally, if this child “knows” her junior high school is the most contaminated place on earth, how will she handle this scraped up knee? One of the dilemmas of parenting a child with severe OCD is that your never quite certain what’s rattling around in their head at any given moment or how their going to react. Two days after the initial incident, I asked to see the scrape to assure healing was on schedule. I was expecting to view a naturally occurring scab formed, thereby assuring her immune system was taking care of issue. I was, yet again, taken aback by what I saw on my precious child’s knee. In front of my bewildered eyes a raw deep cavern of flesh. Where’s the scab I questioned? What happened honey, what has happened? “Momma, the germs from school get into the scab and I have to get them out! You just don’t get it!” Sweetheart I said, “the scab is your bodies way of protecting the wound to heal. It keeps any germs out so it won’t get infected.” Exasperated she exclaimed, “the germs get into the scab and I HAVE to get them out!”

What is a mother to do, it’s late at night and tomorrow it’s back to the innumerable rituals relating to this excessive “school germaphobia” we face five days a week. What about her knee? If she goes to school tomorrow, it is inevitable that she will dig further into her flesh to remove the invisible foes lurking in her mind. All night I lie awake, thinking about the real danger associated with such a gaping wound. What should I do? Keep her home to allow a new scab to form in the assumed safety away from school? Should I send her to school only to await the inevitable upon her return. As she will spend hours in the shower scouring every inch and orifice of her little body to rid it of the “school germs?” Yet, today in addition to her “normal” shower routine she will be removing flesh yet deeper and deeper into her knee! Can her pediatrician help, I doubt it. She doesn’t get it either. What about her psychiatrist at Duke? He won’t help, he says she’s not treatable, “her only hope is medication and time.”

Upon mornings coming what did I decide to do, you ask? I let her sleep in. I will not blame the OCD for her missing school when she awakens. But, later today I’m going to discuss how we can differently wrap the wound such that it will remain “clean” while in school, tomorrow. Some say this may be enabling, I agree. However, sometimes the irrational fear of germs can create a situation where a reality based infection can become a serious issue. I can only pray my plan works and tomorrow may be just a little different than yesterday.


Together

I hope you will join me to learn more about others caring for children suffering from the various forms of Obsessive Compulsive Disorder. It is through the sharing of our personal triumphs and battles, struggles and gains that we all become more empowered. Our empowerment provides us a place to turn and learn enabling us to better care for our children through their own struggles.


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