UCLA "PULLS A DORFMAN" / THE MISMANAGEMENT OF JAMES MARSHALL'S HEALTH CARE

UCLA is unaware of the role they played in upsetting James. The only thing they know is that they can't deal with James when he is in pain and stressed beyond his limits.

UCLA kept sending James to the ER, knowing that testing for a urinary infection/painful crystals in the urine can take from four to six hours or longer, which is very stressful for an autistic person. Time and time again, the ERs have found infections that UCLA did not find. The danger of using ERs for primary care are that James will be given a sedative that he has serious bad reactions to. He cannot take Ativan. It causes him to have to wear diapers, to bleed in the urine and to cry non-stop in pain. It does NOT calm him down, it increases his pain.

In a recent ER visit that UCLA sent James to, the doctor believed James' reaction might be "ATIVAN SPECIFIC" and so he used VALIUM to help James cope with having to wait in the ER for hours until the test results came in. James had a horrific reaction to the VALIUM. He cannot take benzodiazepines without immediately losing control of his bladder, blood in urine and extreme agitation that seems related to the bladder pain getting worse. He has fainted many times after being given ATIVAN and has passed blood shortly after fainting. 

UCLA has been aware that James has been bedridden a great deal since October 2015, often three weeks out of each month. Testing for what might be causing this has been unusually slow, to the extent that many people have asked why UCLA is moving so slow to rule out abdominal problems.

The more times UCLA sent James to the ERs to detect infections their labs for some reason never detected, the more the risk of James being given sedative that he cannot tolerate increased. When that finally happened, UCLA responded by completely abandoning James instead of acknowledging their role. James was howling in pain at the time UCLA decided not to see him anymore.

Earlier this year Dr. Bill Dorfman dropped James as a patient as we were on the freeway headed in for a scheduled cleaning. Suzie at his office was the only one who was able to clean James' teeth without sedatives. That loss was devastating. I am having trouble borrowing the $54,000 to repair James' teeth that were destroyed by medications given to James by doctors. Dr. Dorfman was keeping decay at bay while I struggled to get the loan. Unfortunately, OCWEN keeps destroying my credit score in spite of my six year perfect payment history and is being investigated by the CFPB and the Attorney General for this ongoing disruption and unjust financial crippling of our lives.
                  
To have James' doctors turn on him at a time when he needed them most is unfortunate but perhaps will save his life. The doctors who abandoned him were not moving in a timely manner to find out why he was so often fatigued and in pain.

Sometimes upheaval is good. I have no plans to sue UCLA or anyone who thinks James belongs chained to the wall of a dungeon because of his response to benzodiazepines. My only motive in writing this is to educate and clear a path for healing for James. People who do not want to help James need to get out of the way and make room for people who can and will help. There are UCLA nurses and assistants who try to offer a coloring book to an autistic person experiencing a painful bad reaction to Valium. They refuse to recognize they are part of the problem. You would not offer a coloring book to a person who just experienced a car wreck or was having a heart attack. People who are having extreme bladder pain exacerbated by valium do not want to sit down and color in a coloring book. They are crawling out of their skin in pain.

Autistic people screaming in pain also do not want to answer questions they cannot and do not know how to answer. They do not want to engage in small talk. I told UCLA nurses that talking to James makes him scream. He can't handle it when he is trying to manage pain. I have had nurses tell me, "I don't mind...." and they continue to upset James. They think I am telling them I am worried that James' screaming will bother THEM. I am telling them to please stop upsetting James.

When a nurse tells me that she does not mind if she makes James scream louder, I try to politely tell her to leave the room. I try to tell the doctor on call that they are CREATING a problem.

The UCLA staff looked like deer in headlights, totally clueless that they were creating a situation. James knocked a jar of cotton balls off the counter and that was it. All his UCLA doctors canceled all his future appointments, his cancer screening for his bowel that they had managed not to do since October 2016 was canceled. That jar of cotton balls was the last straw.

I was able to get James a diaper prescription without UCLA's help. Dr. Curls did give James a painkiller, after the days of pain without help, but it was too late, her peers already condemned and banished James from all the UCLA offices.
Cotton ball jars at UCLA are safe now. James may have cancer of the bowel or another condition directly related to years of being given too much ATIVAN....but what matters is that the cotton ball jars in all the UCLA offices are safe now.

James has been resting comfortably at the hotel where we are staying while the insurance company removes the mold from our home. The hotel does not think James is the monster UCLA is making him out to be because of a cotton ball jar being knocked over after an idiot tried to get James to color in a coloring book while he was obviously in pain. She let me know she didn't mind if she made him scream louder.

UCLA doesn't get low functioning autism. They like high functioning autistics. Their response to a low functioning autistic is not acceptance. Their response is to try to make mom feel bad for not trying to turn a 32 year old autistic young man into something he will never be, the high functioning autistic UCLA prefers. It is exactly like being mean to a man who has lost a leg and telling him and his mom he ought to be able to grow a new leg, that they are just not trying hard enough.

It is unreasonable to ignore James' very real health problems and focus on changing what cannot be changed. It upsets me and it upsets James when doctors ignore a bladder infection and insist James should have yet another round of behaviour mod therapy. I paid UCLA $2,500 a month for about two years in the 1980's for intense behaviour modification. It got James out of diapers, which some said would never happen. This recent mismanagement of his health care has regressed James back in diapers with a painful bladder problem. UCLA could use some behaviour modification.

I have had young UCLA doctors say to my face that they wished James was higher functioning. It is probably a blessing in disguise that they no longer want to treat James. We will probably make progress now and James will flourish instead of languishing in a painful limbo.

I don't want to hear excuses or justifications from UCLA. I was there. I saw the bad choices and delays and over use of the ER.

Meanwhile, I do think UCLA should look into the fact that on many occasions their labs failed to detect infections that ER labs did detect. Maybe the long distance of the lab is ruining the samples? It has happened enough times to be a concern.

I have written this so I do not have to explain myself to various departments of UCLA that may ask me to tell my side of this unfortunate situation. I have to focus on moving forward and getting James to health and safety. I only have the energy to spare to tell UCLA once what they did wrong: They ADDED to James' stress then complained he was too stressed. They took too long to respond to his fatigue and pain that became serious in October 2015. UCLA allowed James to experience long periods of agonizing pain that they would not normally let a non-autistic person suffer. They exposed him to more stress by sending him to experience HOURS the ER for urine tests that they should have been able to do in a few minute in the office. The accuracy of their urine tests is suspect due to the number of times infection was found in the ERs but not via UCLA tests.

Bottom line, simple language: UCLA stressed the hell out of James and then dropped him because he was too stressed for them to deal with. While UCLA dumped James, just like Dr. Dorfman did, in this society where health care is becoming snooty like a posh restaurant, for the record, James deserved and deserves better care than UCLA was providing him.

Best wishes UCLA. I have to go about the business of getting James back to wellness. I refuse to take any unnecessary detours that could cost him his life or his quality of life.

X-RAYS TAKEN BY DR DORFMAN SHOW EXPOSED NERVES

In 2015 Dr. Dorfman took these X-rays of James' teeth. You can see how the nerves are exposed.
You can also see where one tooth was lost while waiting in vain (on a waiting list) for treatment from sources that accept James' insurance.

The badly infected tooth was removed, but not by any of the dentists who accepted James' insurance.

Most of you are too young to remember the movie MARATHON MAN, the 1976 suspense thriller where Dustin Hoffman is tortured by a Nazi war criminal who is living off diamond sales and asks over and over, "Is it safe?" while he pokes Hoffman's dental nerves. This is considered one of the worst forms of torture and yet this has been James' reality for nearly a decade now. James has had broken teeth that cause this sort of excruciating pain.

The question now is: "Is James well enough for the four surgeries (at least) that it will take to repair his teeth? Is it safe? Will it be ok to do the surgeries in the dental office or should it be in hospital? Which hospital?

Suzy, at Dr. Dorfman's recommended UCSF School of Dentistry Prosthodontics. (...Before we were given the boot. Dr. Dorfman's office made it very clear that they would not clean or X-ray or examine James' teeth any more and Dr. Dorfman would NOT give any recommendations to James.) I contacted local referrals first. It will be a lot more costly to travel to San Francisco and reside there until the treatment is complete but if James' health continues to spiral downward, that in hospital option may be the only option that is safe.

At this time I am fundraising for the local, less expensive, in office treatment. Last week I attempted to get a personal loan but the damage done by OCWEN to my credit score is still not repaired and I have to stop trying to get the loan until OCWEN repairs the harm they did to my credit. If I continue to try to get a personal loan I will only lower my credit score more. I have a six year perfect payment history on my OCWEN home loan. Unfortunately that history is not showing on Equifax due to recent activity by OCWEN which is a matter of public record (OCWEN snatched our home, bank owned it and then rescinded...which demolished my credit score). I was well on the way to getting James' dental surgeries financed when OCWEN knocked us for a loop, totally out of the blue and in spite of my 6 year long perfect payment history.

Maybe OCWEN will consider coming to James' rescue in this matter since their actions had such a profound negative impact on James' life and their efforts to repair our credit are not swift.

If James needs to have these surgeries in hospital, I would like Mr. Ronald Faris, CEO of OCWEN to seriously consider covering the costs so that James can have this done immediately, as soon as his health permits. James looks horrible and he feels horrible.

CC: Mr. Ronald Faris, CEO of OCWEN

PS: In spite of my outrage towards Dr. Bill Dorfman's recent behavior towards my autistic son James, I am profoundly grateful to him for taking these X-Rays of James teeth in 2015 and giving me this tool to let James doctors understand the pain James is suffering. The dental clinics that accepted James' insurance said it was impossible to X-ray James teeth and did not clean his teeth or X-ray them on any of the many appointments I took James to. After each of those disappointing visits I would make an appointment at Dr. Dorfman's office and pay for the cleanings and X-rays that I could not get done for James using his insurance.

These X-Rays by Dr. Dorfman prevented James from being slammed with psych meds every time the pain flared up.....not counting the Little Company Of Mary ER that wanted to zap James because their resident drunk was using the ER to recuperate and rest up for his next drunk and threatened to smash James' face if he didn't stop crying in the emergency room and interrupting the drunk's nap. 

An autistic person who's teeth have been damaged by medications is likely to be given even more life threatening medications to shut them up if they cry from CHRONIC, UNTREATED dental pain. Insurance covers all these dangerous drugs that kill so many American's every year, but it doesn't cover tooth damage caused by medications.

~ TO BE CONTINUED ~

PULLING A DORFMAN, A NARCISSISTIC RESPONSE TO A MEDICAL CRISIS

There is a new phrase, new medical terminology called, "PULLING A DORFMAN" It's not a good thing. It's a verbal monument to a narcissistic choice made in a medical crisis.

I pitted some cherries for James. He hasn't moved all morning. He looks like he is in pain. I gave him an Advil.

He has medical appointments this week. Last week his primary care doctor, Dr. Curls said to take James to the dentist to see if that was why his face looked swollen on one side. She said to remind the dentist that he didn't have to fix anything, just let us know what was going on. We NEED to know what is going on.

Dr. Dorfman has been cleaning James' teeth since 2012. On James' last visit he only got a cleaning, no X-rays and no exam by the doctor. We were on the way to James' scheduled cleaning at Dr. Dorfman's on Friday when Dorfman's office called and said not to bring James in. That was such a shock that when OCWEN called to report their progress on restoring my credit by reversing the pulling of my perfectly paid home loan and putting it back on Equifax and OCWEN asked if I was available on Wednesday, I said yes, early in the morning because mid-morning the social worker who "PULLED A DORFMAN" was coming to take the annual update on James' medical conditions and what medications he is taking. She had also canceled James' appointment the same day of the appointment on March 24, 2016. James was bedridden on that day like he is today, May 9, 2016.

PULLED A DORFMAN is when a professional person cancels an appointment while you are en route to said appointment. A DORFMAN is usually pulled on a person of modest income who always pays their bills on time but has to get a loan or fundraise for expensive surgeries. You pull a DORFMAN on a patient who always pays for dental cleanings and X-rays the day they happen but can't shell out $64,000. without batting an eye. The sicker a financially ungifted patient suddenly becomes, the more entitled such professionals feel to PULL A DORFMAN. As previously mentioned, months ago after James had a dental cleaning and got into the elevator with Dr. Dorfman, Dr. Dorfman looked like he had swallowed a big bumble bee. The mere sight of James was too upsetting to Dr. Dorfman.

I need to say this again: I always paid for James' dental cleanings the day of the cleanings. I paid in full with my CareCredit Card from Synchrony Bank. James was not a charity patient. On Friday Dr. Dorfman's office refused to examine James, refused to let me pay with my CareCredit card with the $3000.00 credit limit. The cost of the exam would have been covered by that limit. James' primary care doctor just wanted to know if James had a dental infection causing his face to look the way it did, the way it does now.

In life, if we are what we do and the things we do are big enough to leave a big impression on others, sometimes monuments to our deeds get named after us.

If someone tells you that you have PULLED A DORFMAN, you probably hurt someone. You probably disrespected them. You probably behaved in a narcissistic way, thinking more of your own personal distaste over having to look at an ill person who could only afford preventative care than of what that person really needed from you, which was much less than you fear.

If Dr. Dorfman let James have an exam on Friday, I would have paid for it in full on Friday and Dr. Curls would know what step to take next to help James.

In Dr. Dorfman's mind there were fears great enough to warrant his PULLING A DORFMAN on James on Friday. Stop the car. Turn around. You shall not pass. Go away. Don't bother to come in, your appointment is canceled. Not going to tell you if you have an infection or not. It doesn't matter that you always pay your bill on time. Go. Go on now. Git.

ELON MUSK BUILT A SPACESHIP FOR DR.BILL DORFMAN, THAT IS MY STORY

This photo was taken during a UCLA visit on May 5, 2016. The UCLA doctors that James is seeing know that this is happening to James about three weeks out of each month. They don't seem very upset or concerned that James looks like this. His eyes look strange. One eye appears to be rolling back into his head. So far UCLA doctors seem so relieved when a test shows that it is NOT what they are testing for. They seem so happy about what it IS NOT that they seem to forget and stop discussing the fact that he feels horrible and looks horrible.

I'm glad that the pancreas CT shows that the previous lesion siting was probably a shadow. But I'm not HAPPY because I see James is suffering....that his experience today is pain.

James has a very bad dental problem that his insurance has not helped him resolve. I began a fund raiser to pay for the four dental surgeries he will need. It is frightening to me that none of the dentists we have consulted believe the dental pain is what is making James bedridden. I am frightened that James may be too ill to survive surgery. He is in bed now and he looks awful. I express my concerns to UCLA on almost a daily basis. 

It feels to me that UCLA is taking the position that if they don't know what is causing James to be bedridden, then it's  probably not important. They act like this is not happening. I guess they are all thinking this has to be his teeth causing him to feel this bad. Sometimes it feels like doctors see teeth as not part of the body....like shoes, like they don't interact with the brain, heart and other parts of the body and if it's dental, it's not their concern. I think dentists and doctors needed to work together more.

James stays in bed almost three weeks out of each month. Here is a photo from this week. He is under his favorite blanket holding his head. He doesn't even get up to play with his toys. He found a way to make a tray out of a toy box lid so that he can have his favorite toys in bed with him.

James has teeth that were destroyed by the off label use of a medication to help autistic people sleep better. It did not help him sleep. It made him ill and destroyed his teeth.

I believe his teeth hurt enough to make him stay in bed, but I also think something else is happening because of the YEARS he has had severely broken teeth with exposed nerves. I believe James has a COMPLICATION from having an untreated dental problem. A complication that may make his dental surgeries dangerous if the complication is not factored in.

 The dentists who accepted James' insurance did nothing at each of his dental appointments since 2012. 

The one good thing was that each time I took James to Rancho Los Amigos dental clinic, each time they failed to do X-rays and cleanings, I would call Dr. Bill Dorfman's dental office and use my CARECREDIT credit card to get James cleanings and X-rays. 

At least James was getting his teeth cleaned and he liked Suzy. At least we were stopping the teeth from rotting. They were broken but we didn't have to let them rot while trying to arrange the dental restoration. We could keep them clean and decay free.

 Suzy was able to clean his teeth without using ATIVAN or any sedative. James got to know and trust Suzy and he likes her. Rancho used ATIVAN and yet did no cleanings. The ATIVAN didn't help get anything done. ATIVAN only made James sick and made him lose control of his bladder, which in turn was humiliating for him. He couldn't take a short walk without losing control of his bladder before he could make it to a rest room. All that ended when Suzy cleaned his teeth. No more ATIVAN, no more bladder problem.

James had an appointment with Suzy this week, May 6, 2016. I kept telling James to hang in there, Suzy would clean his teeth and find out if there was an infection.

Video of Suzie cleaning James' teeth

At the last minute on the day of the appointment, Dr. Dorfman's office called and told us not to come in. They don't want to see James any more even though we always paid in full for the cleanings the same day of the cleanings for years. 

I am thankful that James does not know how Dr. Dorfman's office feels about him. James really liked having his teeth cleaned by Suzy and those cleanings are the reason why his broken teeth did not rot. 

James does not know he was dumped by Dr. Dorfman's office. This kind of thing happens to autistic people more often than you would like to think. 

For example, we were referred to a prosthodontist, Dr. Song, and for MONTHS I waited for Dr. Song to finish reviewing James' records. I faxed Dr. Song whatever he asked for. Still, Dr. Song acted sheepishly and sometimes bizarre. He would talk in a very faint voice and ask strange questions such as "what did we want?" as if he was confounded as to why we would be referred to him. 

I answered that we were referred to see if he would repair James' teeth. 

Dr. Song never let James come in for an exam. Each time we called he'd say he needs more time to think about it. I told James' UCLA doctors that it appeared Dr. Song was never going to respond with his decision. Four months have gone by. 

It looks like Dr. Song just doesn't want to say he doesn't want to do a full mouth restoration on an autistic person. It appears his method of rejection is to string the patient on, ask for endless documents to make it look like he is considering the case, claim to be thinking about it and hope we will take the hint from his silence when months go by without his making a decision. 

Fine. James doesn't need a dentist who acts so silly. James needs a skilled professional prosthodontist. Dr. Song reminded me of Michael Jackson parodies that I had seen...overly coy, sheepish, self-indulgent, paranoid, acting like someone is chasing him when no one is chasing him. James needs his teeth fixed. This drama from Dr. Song and Dr. Dorfman is stupid stuff.

I should have seen this coming. At the previous dental cleaning, only Suzy interacted with us, the dentists did not examine James or do X-rays. They peeked around corners as if they were all playing peek-a-boo or tag. Grown men were acting like they were hiding from patients. I suppose that was a hint of the upcoming drama. Dr. Dorfman looked like he swallowed a live bumble bee when the elevator door opened and we got in with him.

I'm not going to tell James that Dr. Dorfman and Suzy don't want to clean his teeth anymore. If James mentions Suzy, I'll tell him Dr. Dorfman and Suzy got in a space ship that Elon Musk built for them so they could clean EWOK teeth in a galaxy far far away....so we have to find someone else.

It's Mother's Day and my son is bed ridden, looking very ill. I'm not going to break his heart or crush his spirit by telling him the truth about why his dental appointment was canceled as we were headed there. (It would have been nice if they canceled BEFORE we were actually on the way.) James doesn't need to carry the weight. He has enough on his plate.

People say I have a sense of humor. If James asks about Suzy, I'll do a little dance, talk like ELMO and report that Suzie is cleaning teeth on another planet. Sometimes humor is all we have.

I hope UCLA does something on Monday. It feels very wrong that James is suffering like this.