When my daughter, who is now 5 years old was 3, she kept complaining that her head was hurting. This went on for about two weeks before I decided to take her in to see the doctor.

He did the normal eye exam and she 'passed', but because three year olds should not be complaining of headaches, he suggested I take her to a Pediatric Opthalmologist. Do you know how hard it is to find an Opthalmologist that would see a three year old?  It took me two months! 

But, after I found one, and took darling daughter in. We found out that she had the beginnings of 'Lazy Eye'. She walked out with a pair of glasses on order and a grateful mom. The Opthalmologist had told me that if we had not brought her in, and waited until she had started school, darling daughter probably would have had to wear an eye patch to stregthen her 'bad' eye; and we all know how cruel kindergardeners can be to someone who is 'different'. 

Thanks for writing.

Tammy Cedo

 Dear Tammy

Thank you for your beautiful sharing of a very important experience.  There is more to vision than 20/20- millions of kids are missed by vision screenings.  its estimated that 1 out of 4 kids have vision problems.  Over 18 Million kids have not had eye exams before school, even though vision is our dominant sense for learning.

I'll share my own story as to why i became so interested in the vision field.

From day 1 in optometry school, I knew that there was more to vision beyond 20/20, due to my own struggles with reading.  As an 8 year old, I remember seeing my sister snuggled on the couch reading her favorite book.  She’d read for hours and hours and hours.  She loved to read.  I'd pick up my book, sit on the couch, and after a few minutes, I'd be sound asleep.  I knew how to read, had plenty of books to read, wanted to read, and saw well; yet after 10 minutes of reading, the print would blur, the letters would dance around, my eyelids became heavy, and then it was "lights out" for me.  

I never understood why my sister took books on a vacation.  Books on a vacation?  What a waste.  I go on vacation for fun!  Reading was work.

I quickly learned to avoid reading, even through college and optometry school.  Nothing I’m proud of, it’s just the way it was.  Luckily, I was able to compensate. I was organized, motivated to excel, knew how to take tests and made good grades.  

After experiencing vision therapy at the age of 40, I now love to read.  I look forward to vacations... not just for the fun and relaxation, but it’s the only time I have to read for pleasure now!

Many of the patients I treat in my practice are not as lucky as I was.  They don't have the skills to compensate. They struggle in school: they can’t finish a book, flunk spelling, dread writing, forget their math facts, feel “stupid”, avoid tasks, lose confidence and eventually give up.  Parents are frustrated watching their kids struggle. 

When vision problems are diagnosed, vision therapy can often lead the way to creating successful, confident students and athletes.  What a gift — to be a developmental optometrist and be part of this beautiful learning process.

All kids should be visually evaluated by an eye doctor by age one, then age three and then yearly thereafter. I've included some info as to how to find an eye doctor who evaluates children!  Look for someone who really has experience with kids!

For infants under 1 year old, there is a great program through our national American Optometric Association Foundation called Infant See.  It is FREE!  I've cut/pasted some info below. 

InfantSEE®: Establishing a Lifetime of Healthy Vision for Infants

In an effort to encourage infant eye and vision assessments and to ensure they are accessible to everyone, Optometry's Charity™ - The AOA Foundation and The Vision Care Institute™, LLC a Johnson & Johnson company, created InfantSEE® a no-cost public health program developed to provide professional eye care for infants nationwide. Through InfantSEE®, optometrists provide a one-time, comprehensive eye and vision assessment to infants between the ages of 6 and 12 months, offering early detection of potential eye and vision problems at no cost regardless of income or access to insurance coverage.

To find a developmental optometrist for children, check out the find a doctor link at:

www.covd.org

Please feel free to visit my websites for more specific info on vision at:

www.LynnHellerstein.com

www.HBVision.net

Lynn

 

I know this blog is about kids vision, but the new hot movie, Avatar, is a big topic in the vision care world and likely is the start of a new trend in entertainment.  Don't be surprised if Avatar makes you sick!  There are neurological links between the balance and visual system.  The demands of watching Avatar in 3-D has caused nausea and discomfort in some viewers who have problems with coordinating their eyes together, uncorrected prescriptions, lazy eye, ...

If you want to learn more, take a look at my blog

lynnhellerstein.com/2010/01/from-dr-dom-maino-avatar/

Lynn

Hi Lynn!  A few years ago I had a really interesting patient, and the new James Bond movie became a BIG part of her history.  She was 50ish, and had been hit on the head by a beam falling at her 'big box' workplace, causing a mild brain injury, neck problems, chronic pain, etc. 

The PT / balance specialist and I had really made wonderful progress, neuro-psychology input from Chris Young, who you see on Lumigrate.com video (FREE by the way and an hour long, about health management systems/paradigms and the system we have had and why the problems have occurred and how another paradigm works better today if we'd shift to it). 

She'd even been so much better that she had a spring in her step and ran out to get supplies to cook us a late lunch one day as part of her occupational therapy treatment. That weekend, she was feeling so much like her old self she went to the new James Bond movie at the theater, not thinking it would be LOUD and BRIGHT.  Flashes with gunfire, and all that sorround sound they have in theater systems ...  she was literally set back for a whole month almost to the level of when we started with her in treatment! And the unfortunate part of having insurance reviewers who are used to people manipulating the system and them having to be so money-conscious, it set her back overall.  So it actually, in my opinion, really affected her long-term outcome. I was seeing her going back to what she had been doing or something she'd done in the past, and she was really not employable when we had to stop our therapies and they were going to determine 'the outcome of the case'.  

Thanks for stopping by and bringing another aspect to our awareness of your expertise.  It's certainly more than just children and acadmemics! I hope the story from my professional experience helps as well.  ~~ Mardy

  

Mardy contacted me asking for guidance on websites to refer people to related to a conversation she came upon about optometry related to an adult who had been treated for 'lazy eye' as a child and has recently had more problems at mid-life and was back to wearing glasses.  The person had worn glasses as a child to correct it, and the current optometrist was discounting that as treatment.

Here are a few websites for further info if people want to learn more about this type of situation and what is now believed to be the appropriate treatments so that people can at least be better aware, and possibly seek treatment if approriate for them.

Thank you for asking for my input and I hope this is helpful.  And naturally, I invite people to my website as well, which has these and many more resources for further education. -- Lynn  

 

 Here's the nutshell of my story:  My mother had a degree in elementary art education, my father in psychology but he was a numbers guy who had chronic fatigue syndrome in the 1930s so got the fastest degree he could for the fizzled brain he had after the illness: His brain was just never the same again for engineering.  Then World War II happened, and he joined ROTC and wanted to just hurry up and graduate and get 'out there' serving in the armed forced. 

I learned to read before I went to kindergarden, and remember being SO bored when I went at first, thinking 'these kids don't know the alphabet?' ... why am I even here? But it was fun and social. I remember the teacher coming out on the playground and making us all skip for her to evaluate. Parents didn't talk about 'milestones' back then, at least not where I was from.

First grade went by without incident, my greatest memory is of the first day when our teacher had a bright red BIG pencil for each student at their desks standing on end.  

By second grade the teacher identified me and two boys to go to Denver with the principal and be tested for learning problems. What she picked on I'm not sure; my grades were good, no behavior issues. I remember liking to use my finger to keep my place and having difficulty reading out loud -- losing my place.  I was tested with a fancy gadget, even, a big machine that recorded my eye movements as I read words on a screen that was illuminated. But the district didn't have anyone on contract to interpret the results, only the technician to administer it.  My grades were all good for years and as the work got harder, my grades started sliding here and there.  Gradually, I struggled more and had more.  My self esteem suffered as a result. It would have made a tremendous difference had there been an identification made of what was 'not right' for me. At this point in time, I was just like all the other students in school.  

My mother went back to college to become an elementary general education teacher when I was in second grade.  It was the year my family ate a lot of pot pies, as in those days there weren't many economical frozen meals as she was taking night classes.  I remember learning to play a song on the piano, with the help of my father one evening when she was in school.  She came home and I performed "I would like an ice cream cone, right a-way" and she went straight to the freezer and started to make me one!  I didn't want an ice cream cone, that was just the song in the book we'd chosen for me to learn!  It's funny the things you remember.  I soon started lessons with a piano teacher who lived near the school so it was easy for me to ride a bus and get to her house and be picked up afterwards.  She was not a particularly good teacher and I was not a particularly good student. The piano went from something I enjoyed to something I dreaded.  I didn't know why.  I didn't understand why it was so difficult for me.  My sister had chosen flute when she was that age, as an incredible music teacher who was a flutist and gave lessons had purchased a puppy from my parents, who bred and showed AKC Golden Retrievers.  That was what my mother had hoped would be her vocation after getting married, having a degree in art education, but it was not profitable after many years of trying. 

And then the unthinkable happened; she got a job at the same elementary school I attended. Very convenient for her and for me if I needed money for something. When you're a kid you adapt to things and sometimes don't realize how the situation is not in your best interest, then realize more as an adult.  She became friends with all of the teachers to some extent or another, and the ones who were 'fun' as opposed to 'none', or 'nuns' as the airline industry refers to flight attendants who vary in their lifestyles when away from home. So things became 'skewed'.  

I remember her getting home one afternoon and remarking on something good I'd done or that had happened to me that day and feeling a bit like my privacy was being invaded.  I didn't think about how there would be an issue of a teacher not 'pushing' her the way they would another parent, since she was their coworker and they had to work together for a long time, potentially. My teachers would encourage her to hear what my IQ was but she refused to know. It was just the way she was, not a very involved mom but very committed to her work and continuing education to become as good a teacher as she could be for the type of students she preferred to work with.  We were ability grouped based on all those tests, including IQ, and she liked teaching the lowest group.  I was in the highest group, so that wasn't a problem when I got to fourth grade, the grade she taught for the decade or so she taught there. 

My dad didn't go to conferences, and as time went on they both became less present at programs in the evenings that I was part of. My friends thought it was because they were 'older parents', but it was, sadly, their 'issues' getting in the way. Like me, my dad had developed what I am 100% sure was fibromyalgia, which naturally was never diagnosed, even in the years since Lumigrate has existed where there is plenty of awareness by doctors about what it is.  Even with me telling them what I knew about his medical conditions.  (Worse, they didn't even diagnose the Parksons portion of Lewy Bodies Disease, which he died of in 2010).   When I was in school, the poor guy was having lots of troubles with migraines, and he had a fairly 'big' job with an international corporation as an international pricing coordinator. On top of that, we lived west of Denver in the mountains and had to drive 45 minutes into the sun twice a day; I think everyone can relate to how difficult that is when you're feeling well.  He was a 'trooper' and now that I'm in middle age, I don't know how he did it. So "I'm not 'complaining, I'm explaining".  

He likely was 'lulled' into nonaction, since my mom was a teacher/expert.  It would be like if she were a nurse not pushing to take me to the doctor and deferring to her expertise.  But that wasn't really it, we later figured out that my mother had significant 'issues' that worsened as she got older.  She simply was not that invested in motherhood, getting her needs met through work and the socialization her work brought her way.  

The teachers and school secretary she ended up hanging out with, in addition to her sorority sister and best friend from before my parents met, who had moved with her husband to live a few miles away, were GREAT fun. Sometimes they'd come to our house for "FAC", and some were really amazing teachers.  As was my mother -- she believed in the 'three Rs', discipline, structure, etc.  I always knew which classroom was hers each year after I was older and returned to stop in if I needed something, as there were no telephones in the classrooms so you only called and interrupted in emergencies -- there would be noise coming from all the doors and then HERS ... quiet....  

She took advanced, progressive training in what was essentially OT for learning disabilities, something called 'sensory integration dysfunction' -- Dr Hellerstein's clinic's OTR supervisor is certified in SI treatment.  My OT program had a big-wig instructor in this speciality area and determined I had a pretty good case of SI dysfunction, so I got an informal 'diagnosis'/label when I was in my mid 30's finally!  My mom actually screened every student in the school and knew I had some issues, but it just wasn't of a concern to her (or me at the time). "Everybody I've tested except ONE student has shown some sort of imperfection with their neurological system", she'd say; that student was a gal in my class who was able to do EVERYTHING well.  

So my mother knew of the specialists in Denver that are like what Lynn Hellerstein specializes in, and she would refer students' parents to them. In learning of Dr Hellerstein's personal struggles a few years before me in Denver as a student and getting treatment, I have finally answered the question of 'how did she get training in such progressive information in the 1960s', it was before the OT, Jean Ayres, wrote about it and turned it into a specialty in occupational therapy, I believe.  But unfortunately, unliked Lynn Hellerstein as a child, I did not get the intervention I needed. 

In junior high, I wasn't always on the honor roll anymore, and in high school I started taking the easiest math in order to get good enough grades to be able to get into college.  I graduated in the top quarter of my class, was accepted to all the state universities I applied at, and had missed out on all team sports. Having been very active as a child, I can reflect back and see how my not doing well in many PE events really dinged my ego about how I perceived myself.  Friends wanted me to try out for basketball team and I was not chosen, and this was a very small, rural school.  

I had inherited my mother's talent for art to some extent, but my difficulties getting it from my brain through my hands was problematic and the results were not usually what I had envisioned.  Every now and then we'd study a modality that meshed well with my abilities and compensated for the disabilities and have a huge success.  But they were few and far between.  This irratic result was confusing to me, and I now can see how I just moved along to where I wasn't being confronted with the difficulties and 'injuries'.  I stopped taking piano lessons after 9 years, never winning the yearly talent competition as my sister did every year, but coming in second once when I teamed with my clarinet-playing gal pals to accompany them in a duet.  TEAMWORK paid off, but when they also asked me to do intramural track and field with them, I preferred to go home and hike with my dog and my family member's dogs, take care of their kennel and dinners and the other chores I had outside and inside, and talk with my mother when she got home from school and would start grading papers and we'd make dinner in a leisurely way.  

After dinner and cleanup was done, my father would help me with math homework, and I remember in high school his getting up from the table and going to where my mother was down the hallway and overhearing him voice his concerns.  He saw me being right with the equation and process and then I'd just "lose it" and have to start over again.  At this point, someone might have said it was attention deficit today, but I can tell you what was going on was that my brain was having so much difficulty organizing what all the symbols meant and how the components/symbols fit together, it just would hit a 'wall'.   

I had to live in the dorms my first year, something I am opposed to ever since as a requirement. My second year I got a job typing statistics and moved off campus and lived by myself but planning that my high school sweetheart would join me when he was done with a trade school his family had, in my opinion, mis-guided him to sign up for.  (He ended up completing a bachelors in computer sciences and had a very good career.) I struggled in my schoolwork desperately, and remember actually wishing I would somehow die one day walking to a final exam because I, once again, was going to get a bad grade in a class.  Compare that girl to the one the one I had identified myself as in elementary school: a good student.  

My parents continued to be unhelpful related to my known need for vision therapy, which was not paid for by insurance. Fortunately, I was highly regarded by my supervisor and the deparment I worked for at Colorado State University.  I worked year-round for many years for them as an hourly employee; I believe I was making $5/hour, more or less.  I made enough money to barely get by without using my savings for living expenses and even went years without having my preventive oral care done.

I was completely 'independent' from needing money contributed by my parents after the first year, as they were not in favor of my living with my boyfriend, so that's how it had to be.  I made a decision my first year of college that the amount of money they were contributing was the same amount as they got for me as a dependent on taxes and it started adding up to me as feeling 'wrong'.  That was, in retrospect, the beginning of my pursuits to change how I was raised to be.  

It is my objective with Lumigrate for it to not only have my professional expertise in the areas I have them, but the teamwork of others, AND to have my personal stories, when they are applicable, be included for the benefit of others who might find something that resonates for them which helps them see something similar in their life.  

There was a train track and it was snowy and I didn't know which I'd prefer, but I certainly didn't want to sit for the final.  Fortunately, it had snowed so much the college was closed so I had another two days to study.  I didn't get very good grades -- my self esteem dropped further.  You will find that I have written about other aspects similarly on other topics here in the forums, so I'll refer you to look around more if this is starting to uncover things that resonate for you about psychology or family dynamics, fibromyalgia, stress in childhood, etc. A great deal of my education about alcohol abuse came from my family of origin, as that is how my mother dealt with the things which had wounded her soul. And that is part of why I did not get the vision therapy from the doctors Lynn Hellerstein went to when she was a child growing up in the Denver area. One day a week, my mother didn't want to put me first and drive me to Denver for therapy, just for as long as I would need it -- a year maybe. But, she could have found someone in the area who wanted to make some money and drive me, but she maybe didn't think outside the box. And she was "pathologically frugal", as I like to call it in people.  I was too when I was younger and that was also part of my changes to become 'well' as a mind/body/spirit being of the human variety.   

I decided to stop spending my savings on college until I figured out what I wanted to study -- I attributed it to a lack of desire not visual learning disability.  I set a goal to work for two years because I'm not a 'quitter', and then go back to school.

Out of pressures, the sweetheart and I had gotten married -- I think he was more of a romantic and wanted to be married and I was doing it somewhat to feel more 'grown up' and to be taken more seriously.  I am always thinking many steps ahead and figured we could have a house and cars bought and our college educations all done in time to have children in our early 30s, after having some time and money to play a bit first. A very logical approach, but you're only in control of what YOU do and we were only married a few years.  I remarried, someone who was at 'the big job' interview I had when I was almost 25.  

It was an extremely high paying job for me, and it was extraordinary on the director's part to see my potential and know he could pay me a lot less since I didn't have a college degree, stretching his budget further.  It was a full time, benefitted position with the University, as I'd tested well on the state classified typing test, so the job was originally as a 'typist'.  They then upgraded it to that of senior secretary, but I was really doing the same job tasks, after I'd worked my way through learning many different facets of research program administration, as others who were administrative/faculty staff, but they had college degrees. It was very mentally challenging, made moreso by this undiagnosed, untreated learning disability.  Not having been diagnosed/labeled, I was also not educated about even simple things like fluorescent lights making it more difficult and taxing for my brain/body system.  Like my father before me, I came down with chronic fatigue syndrome (CFS) about five years into it when the project basically caused the Clean Air Act Amendments of 1990 to occur, and we were the central hub of the research.  I was the central hub of the office. 

The 'blessing in disguise'/silver lining was that the CFS led to weak eye muscles which made my learning disability worse so things REALLY were jumping around on me when I read. And I now had the money to pay for things insurance did not! A couple of years before, my ex husband's friend was completing his PhD experimental psychology, and he encouraged me to get back to taking college classes by reminding me it was my LAST chance to take "Introduction to Psychology" with him teaching it.  I wasn't getting an "A" in the class, and I needed LOTS of A's to be accepted into the OT program, so he told me I could get extra credit by helping run his dissertation subjects. He said he knew how intelligent I was and it was baffling him as to why I wasn't 'acing' his class. Did someone miss the memo? I was failing at class after class for years, so getting a B was not suprising to me.  Frustrating! Just not surprising.  

Every struggling student can have success if one good teacher takes notice and an interest and makes good suggestions and the student does their part and grabs the rope.  And FINALLY, at the age of 27, just a month or so after my mother died, secondary to her lifestyle vices/problems, that teacher came into my life!  Because it was someone who I had a long friendship with, perhaps, though he was an outstanding teacher and has gone on to become dean of students and things like that at small colleges.  He received a standing ovation the last day of class when he did his wrapup for the semester.  I've been to a lot of college classes in my 18 years it took to graduate with a bachelors in occupational therapy at age 36, and that was the only time I saw that happen! 

Helping him with his research to get extra credit was one of the KEYS: His project entailed studying faux jurors who watched a recorded trial proceedings and then answered questions; some batches had a camera on them as they watched, others did not.  He went through it all with me one evening and I took the test so that I had done the whole process and understood everything involved.  I went home and he called me right away: I'd scored virtually a perfect score! So why was I not doing that well on the tests in his class? Some of it was from information in the text book that wasn't covered in a way I could hear it.  

At the time, my job was very mired with the special research project going on, my mother had just died, I'd just re-married and had a step-daughter who lived with us without visiting family from start of school until end, and then she'd fly to where the rest of her parents families and her mother had returned to reside after their divorce. But that 'piece' about my memory being exceptionally good for auditory stuck with me, and when my health collapsed into chronic illness and disabling fatigue, including my eye muscles, I looked in the phone book's yellow pages and saw there was an eye doctor / O.D. who advertised they did vision therapy.  

He wasn't certified in all the things like Dr Hellerstein is, and he was training his wife to be his vision therapist, but I worked very hard at what they assigned me to do at home.  Essentially it was all about doing things that were very hard for the visual system and then when you're in the regular world your brain's used to doing much harder so the real world is easy! I also was given a bifocal to blow up the readable information.  Two pairs, one for the computer with the line higher up and another without a line that I wore when walking or running around, driving; the line would make me dangerous on stairs and walking, I found.  (I now use the progressive lens and only have one pair of glasses, but they also have a prism in them to warp things the way my brain likes to see things and a bit of pink tint as that counteracts the way my brain reacts to fluorescent lights. Expensive but they are really so helpful and make my days SO much better! And my vision hasn't 'changed' so if I keep them five years, the $500 price tag averages to $100/year.) 

As I was saying goodbye to the doctor and the vision therapy assistant/wife, as I was 'all done' and discharged, I asked if they knew of anyone who taught speed reading. I had always read SO slowly and it was problematic to what you have to read in college/university. They knew of a woman whose company was The Reading Detective, and I was taking a speed reading class one night a week from her as well as taking a math class of some sort, and having difficulties that I mentioned to her.  "That sounds like it might be discalcula" she said, and suggested I do testing with her. Keep in mind, insurance doesn't pay for this kind of thing, typically, so here I am, 30-something years old and having money flowing out to medical-related things instead of doing vacations and buying bigger houses like my friends. But it was a PRIORITY to me to get through college. 

Learning disabilities were found, including a dyslexia-like tendency but I would catch the mistake and correct it and JUST got enough right so that I didn't earn that 'label', but what I did not do well enough on gave me the labels needed to go to the Office for Disabled Students and get whatever was reasonable accommodation, afforded to me under the American's With Disabilities Act.

I then was able to take the courses you need to get into the OT program with enough success in terms of letter grades to be competitive as an applicant in 1993. This was years, mind you, that I whittled away at a full time job, a family in my home, extended family/parent whose spouse had died and he'd had health problems get drastically worse afterward, with a 2 hour drive each way, as well as trying to have as normal a relationship as you can have when your husband has epilepsy and hydrocephalus, chronic pain, and a possessive, passive agressive personality. 

I remember being in human development after work on the night of my 30th birthday, it was a Tues/Thursday evening class. I came down with a cold, something that was going to occur most every year around my birthday, and just wanted a cold smoothie to take with me to class. I had $1 and change in my purse and a new ATM card and I just could NOT remember the PIN # when I went to the ATM.

So I got a glass of water and a small ice cream cone and went to class. Figuring it was a perfect opportunity to have our work friends over and say SURPRISE when I got home, because a coworker had confided in me that my husband had told her I was having a midlife crisis about turning 30. I wasn't at all, so I figured it was all a fabrication to make me think he was telling people to ignore my birthday but then he was really having a little shin-dig for me, as we'd had a FUN party the year before for his 40th.  I think I'm still finding spilled margaritas on the stereo cabinet that I still have from that era of my life.   But nope, he really was pulling some 'stuff' to drive people away. Eventually I figured things out, with the help of wise friends and coworkers who dropped enough clues. 

I had a VERY flexible job with that research program, but it was awkward working together when our relationship was 'estranged', and I happened to see a job advertised for the student health center at the University, which 'caught my eye', and I applied and got it, not realizing it was an 8 to 5 job, lunch for one hour at noon, no flexibility. So it made it more difficult for me to take classes and I was late to class and frazzled a lot, and started noticing attentional problems at that time, which was new for me. I now can look back on that and see how I was having symptoms of the stressors on my body, mind, and spirit.  As much as I was 'happier' being separated or divorced, I was also plugging back into a social life and activities that I'd given up such as skiing, bicycling, and hiking. And margaritas with friends on Friday afternoons, dinner and then dancing to blues at a wonderful club in Fort Collins which helped lead me to one of my favorite hobbies since, blues music. (I am a founding member of the Pikes Peak Blues Community, circa 2002).  

But I learned more working at the student health center in two years than I can ever express, and it was 'meant to be', I believe.  As was the job in research, as it was such a successful program which the director made so with much collaboration with even 'the enemy' industries.  

I did well enough in school to have a 3.5 or so on my most recent 45 credits and made application to OT school, which was very difficult to get in back in those days. I did well in the program; the students all were surprised when it came to graduation and I was not in the elite groups that get the green or gold (school colors) but a regular 'blackbird' as I referred to it.  I actually protested the segregation and attended in the audience and didn't sit or 'walk' with my class.  That was perhaps the start of my being a 'protestor' and an 'activist'.  I'd worked so much HARDER than I would have otherwise, shouldn't I get some kind of special designation as well?  No?  We only reward the HIGH achievers on grades, not the high achievers on EFFORT and PERSISTENCE.  NOT cool!  Maybe people will think about it a bit if I go sit in the crowd and watch. And go to the parties and talk about why I sat and watched and didn't join them.    

I did well at my internships at the VA, one of which was considered extremely difficult.  I was hired by the nation's biggest therapy provider and was assigned to be the lead/primary/only OT in a skilled nursing facility on the west side of Denver.  I'd not learned anything in school or at the VA about Medicare billing and documentation and I became quite a problem for the company.  They moved an OTR to be at the facility part of the day and the supervisors and managers were having to spend extra time with me.  Fortunately the new area manager they hired was a woman who had been my study partner in a one week extra course I took in Assessment of Motor and Process Skills, and I'd used the patients she had at the MS society at her previous job to practice on in order to become certified in AMPS.  

So she knew I was hard working, responsible, conscientious, etc., and her husband had learning disabilities and went to a woman named Lynn Hellerstein, where they did vision therapy etc.  These types of doctors and therapies are typically not covered by insurance, so I was paying 'out of pocket' for this as well as much of the treatment for chronic fatigue.  I actually had fibromyalgia and wasn't reporting 'pain' -- it took me a long time to realize that the tightness I had in my neck and back, making me ALWAYS wanting a back or neck rub, was 'pain' not just 'stiffness'.  

Once again, I took this very seriously and compliantly did my homework, despite that I was working very long days.  I stopped doing one of the activities because it was opening up my peripheral vision and I was having to drive hours per day after dark in the winter and it was just inundating me -- I was just SO fatigued and couldn't deal with the added lights in my brain.  I was put on a medication that helped my pain but made my eyelid muscles close, and the doctor wanted 90 days to see if the side effect went away, so I drove hour upon hour holding one eyelid open (my left) and driving with my right hand on the wheel.  I had a stick shift in a big Pathfinder at the time, or my company vehicle, this was right when I started working for the driving company which entailed my driving between three offices in two cities. I didn't continue on that medication but found another one which helped somewhat and eventually was diagnosed and medicated in a way that worked overall and I was able to increase my function, add more alternative and functional medicine treatments, then drop back the medication and 'allopathic' medications.  For a while I was on no medication but I find I do better sometimes with some pharmaceuticals. One of them is a muscle relaxant and I can only take it at night because my eye muscles will relax and I can't train my eyes where they need to be looking.  Which is fine, I get by fine.  

My learning disability still makes it harder for me every day in many ways but I'm used to it. When people get to know me have to figure it out in some ways.  I almost hit a curb the other month driving a friend and now he's always watching out when I'm driving.  I don't see icons well on the screen and isn't THAT ironic that I am on the computer and this website all the time! People see what I have accomplished and don't realize how much help I've needed to teach me or do for me things that I likely otherwise would be able to do!  It takes me a lot longer to do things than it would otherwise so I cannot be as productive as I would be otherwise, and in the therapy/medical world where "productivity" expectations are what they decide if you're worth employing or not, it's been a definite problem for me.  Ironically, the people in therapy world/medical world tend to be the least understanding about it of all people I've encountered!  

I hope that my personal story serves to motivate many MANY people to think about that they might have something going on that they don't know is 'wrong', or their children might.  I encourage parents and those who advise people, such as managers, to be aware of such specialists and hope that everyone who has a need for such things somehow obtains it.  I hope in the future these things are covered by our payor sources.  "If in a perfect world...."  

And to all the mom's like Tammy who go out of your way -- kudos.  Particularly when you are with a chronic health condition that limits your energy and finances and all that so many of us know so well.  To dads, l hope you do the same: I remember overhearing mine trying to let my mom know he was seeing something going wrong when helping me with my algebra homework. And most of all to the adults who might have something along these lines, there's no time like the present to start learning about it and doing what you can with the resources you have.  

 

There are other topics at Lumigrate about pyroluria, aka pryole disorder and a bunch of other names in the past. So please Search if you're interested in further information (one is specific about 'addictions', the other more general, and I will also add this onto that one, as I found two new sources of information that I really liked about pyrole disorder (or pyroluria, take your pick).

There is a fabulous article at Natural Papa about children and meltdowns and other behavioral symptoms, and I'm going to provide the link to that here.  Really interesting blog/website if you're into natural and into kids! 

naturalpapa.com/health/pyrrole-disorder-causing-childs-meltdowns/

Then I found one of the BEST articles I've seen yet on pyroluria / pyrole disorder at HealMyFamilyDiet which is on a blogsite (blogspot), and I will provide you with the link here too. healmyfamilydiet.blogspot.com/2013/09/pyroluria.html

Here's a little excerpt so you can see here if you think you're interested in learning more about pyroluria / pyrole disorder: 

---

Symptoms of pyroluria may lead to lifelong issues with severe inner tension, ongoing anxiety, poor stress tolerance (stress of any kind makes symptoms worse), digestive issues including digestion of meat, frequent colds and infections, joint pain or stiffness, acne, eczema or psoriasis, mood swings and reactivity.

The really good news is that once diagnosed, pyroluria is very manageable. The bad news is that ongoing supplementation is needed indefinitely in order for symptoms to remain manageable long term. Without appropriate supplementation symptoms tend to return again in a week or two.

Disorders commonly diagnosed in Pyrolurics:

Alcoholism
ADD/ADHD
Autism/Aspergers
Allergies
Bi-Polar Disorder
Down Syndrome
Epilepsy
Hypothyroidism
Learning Difficulties (ie Dyslexia)
Lyme Disease
Manic Depression
Muscular Sclerosis
Neurosis/Neurotic - can become violent offenders
Obsessive Compulsive Disorder (OCD)
Parkinson's Disease
Polycystic Ovarian Syndrome
Post Partum Depression
Rheumatoid Arthritis
Schizophrenia
Substance Abuse
Tourette's Syndrome (Tics)

Unfortunately Pyroluria falls outside the realm of mainstream medicine due to the fact that the only way to rectify the problem is by improving nutritional status, diet, digestion and stress levels. Mainstream medicine relies on drugs to suppress a symptom or relieve suffering, and this form of treatment will not work for a person who has a Pyrrole disorder.

Sadly sufferers of Pyroluria fall through the cracks and are often misdiagnosed and given medication or drugs that do nothing to rectify the underlying problem. Unfortunately these medications can lead to further deterioration of a persons health.

People with this disorder have copper toxicity. Copper is an essential trace mineral that is vitally important for both physical ............ (please go to the source at link: 

---

It's such an amazing time in history when these nutritional reasons, with genetic causes, are becoming known. Searching on keywords I found a wonderful exchange of some people who came back to a forum area to report on their improvement after starting the treatment and having done it for a length of time. "I don't even recognize the person that wrote what I did above that you have responded to above this" one wrote. 

So an 'integrative approach' is necessary, whether the providers do the integrating or the patients do, for doing the brain work with the skilled people such as Dr Hellerstein is an example of, and the providers to support the person with the nutritional/ supplementation. The article at NaturalPapa is written by an osteopath who consults by phone with people. 

There are other providers on the main Lumigrate topic about pyrole disorder/ pyroluria who do the same, from Florida, an MD and psychiatric NP. so I hope I'm threading together things which help people learn and find solutions. FUN to just add onto something that we created long ago which was a little more work. Many hands, light work -- it gets easier the longer we're up as we're just adding the NEW things that are coming to the surface enough that I find them and think they're relevant for Lumigrate's YOUsers.