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.
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.
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