Doctors

[susiestar]

Yesterday was awful. Just totally horrible.

First we went to the pain clinic. They pushed us off on the department head. He sat and mumbled about narcotics dangers. Apparently he is unaware of statistics and reputable studies that show if you treat pain with appropriate levels of pain medications the risk of addiction is below 1%. That is less than .01 chance of addiction. dependence is a factor but can be handled.

If you deny pain management then the risk of addiction SKYROCKETS. Becomes almost a certainty that a person, adult or child, will turn to alcohol, pot or other illegal and dangerous substances for relief. It becomes more and more inevitable the longer someone is left in constant chronic pain.

He refused to do ANYTHING. Just told us to look at where we want to be in a few months. I walked out. got up while he was talking and got Jess into the frimpin' WHEELCHAIR because she was shaking too hard and in too much pain to walk.

I was mad that we paid before the appt. I won't do that again and will protest ANY payment by my insurance company.

Then we went to the hospital. Where I told FIVE people the same info. When the neuro resident came I blew up. Refused to list her meds. Told him they are in the chart - FOUR TIMES in the chart.

He is not a native born English speaker. CLEARLY does NOT understand the language unless things are said 3-4 times. It was awful. His med students were trying not to laugh. The FOURTH time he left to answer his phone (which I almost took out of his hand as he was so RUDE with it - I did INSIST that he either stop answering it and pay attention to US or get another doctor - HIS boss told him to turn it off then) I asked his med students if he had to have info repeated to understand it and they laughed and said it was "his way" to keep asking.

So for each answer from then I told him "XXX." Then he asked again and I said "I answered that with the only words I have. Those are the words, direct quotes, of what we were told are the test results/what the doctor said/etc.... I have no other words to express this. I have answered that." I had to say THAT twice for every question, but I STOPPED answering the second time. He had to go and talk to the med students to have THEM repeat things to him.

Too much mistreatment is enough. Sometimes you simply must draw a line. It was time.

NOW they want me to believe we have to go to DALLAS for a video EEG. Or back to the first neurologist who refused to see us. I laughed at him when he said this. TOld him that the doc stopped doing them and they were done at the hospital. NOT the doc office. He SWEARS that the doctor's OFFICE does them. He is a fool.

So we are here with NO help. We are supposed to get the EEG next week, though they will NOT make an appt for us and insist that Dallas and this doc's office (who hangs us when we identify ourselves - when anyone with our insurance calls) is the only other option.

I was not rude, even when mad. I cooperated as long as I could. I really did. But my kid is in agony and WANTS TO DIE. All any of these docs can say is "I don't know" and "go home".

What is SO HARD about helping a child in crisis? About compassion? They treated us as if we were unreasonable to go to the ER - stood right outside our curtained area and talked about how we should have just waited for an appt even though her limbs are going NUMB and staying that way for hours.

The ped said it was time to go to the ER. The pain doc said that on Sunday. The ER said we were a nuisance.

I did take a list of meds - typed. And a timeline of events with clear, detailed statements. But these docs cannot read. At one point I read aloud from the card - not to be rude but because there are only so many ways to say "The doctor said he is not interested in treating this". You cannot phrase it otherwise. It is a quote. Period.

I can see how the man in that old movie, John Q, took the hospital hostage until they treated his child. Yet another reason to not have firearms. Cause it seems pretty rational to me sometimes.

It was one thing when the docs pulled this with MY health. That is bad enough. But my kids? Cruelty abounds.

[Marguerite]

It sounds like a very frustrating time.

I too have done the "read from my written list" routine. I had one doctor who insisted I answer his questions and give my detailed history to him verbally. I said, "I have a printout here, I typed it all up for you before I came," but he insisted. So I read from my printout. That was a worker's comp consult, he was seeing me for the insurance company (and his job was to make my life a misery in order to persuade me to drop the case) and that consult literally lasted six hours! Because of course Workers Comp was paying the bill.

The pain specialist should not have treated you all like this. He may have been concerned at putting a young child on strong pain meds, but he should have done his best to findsomething to try, that could help relive her pain.

The pain specialist that DH & I see is attached to a public hospital clinic. In my experience these have been the best specialists in general - those connected to hospital clinics.

I'm not sure if this would be the same in the US.

Marg

[DaisyFace]

Susie--

I am APPALLED and OUTRAGED that you and your daughter were treated this way!!!

This is the United States of America--it should be ILLEGAL to be denied medical care based upon the whim of the doctor!!!

My daughter's issues are very different than your daughter's--but I feel as though we are getting the same denial of care. She sits in the tdoc's office, or at the intake at the phosp and says "I hate myself and I wish I were dead" and the response is "Well, what do you want from us? Take her home..."

I wish I had the answers...I would help you in a split second.

Gentle ((((hugs))))

Something has to happen for you soon!

[TerryJ2]

I can't believe you are in OK. I would swear you are at my cousin's hosp in NYC, St.L's/R. (I don't want to get sued, so I'm just using initials.)
Awful, awful, awful. And more and more typical.
Is there another hospital in a nearby town you can go to? Stay at a hotel for a night? Clearly, this place is a brick wall.

DaisyFace, that is so sad.

[timer lady]

Susi, to be treated this way is horrific.

I watched my mother fight like a mama bear for my youngest sister before she died. She had this way about her that the doctor's respected and they listened.

She spoke calmly, had all the data on hand & never ever took no for an answer. She dealt with some a$$es for doctors but treated them with the same respect that she demanded.

Physicians are an arrogant lot there's no doubt about it.

J should never have been tossed to another doctor at the pain clinic.

I wonder, my dear, if it's time to get the media involved (if J doesn't mind having her life an open book) about the lack of care that is being delivered for your daughter.

[gcvmom]

[Hope]

I sent you a PM.

Did you pay with a credit card? If so, I would call up the credit card company and say you are protesting the charge because you got nothing from them. It's not like you went to a neurologist that gave you his opinion there is nothing neurological going on. You went to a pain management doc who gave you no pain management.

I have a daughter in serious pain, also. To me, even if there is a risk of addiction, if they can lead a more normal life, it seems worth the risk. Our daughters are suffering enough that it is a desparate situation. I guess to the doctors, our kids are a risk they don't want to take.

[KTMom91]

I'm so sorry, Susie. For you having to deal with idiots, but especially for Jessie. Hugs and prayers going out.

[CrazyinVA]

Sigh. This sounds very familiar. When Oldest was at her worst pain between the Crohn's and adhesions, we met many ER doctors like the one you describe. One doctor .. when told Oldest had an ileostomy ... looked puzzled and said, "are you sure it's an ileostomy and not a colostomy?" (even after examining her!) He was a moron, and she asked immediately to see another doctor.

The problem with ER visits and doctors is, they are not specialists. They are not equipped to treat chronic pain or chronic conditions. They are trained to stabilize and get patients out the door. Sort of like phospitals these days, actually. Repeated visits to the ER for pain don't do much good, in fact they get you labeled as "drug-seeking." (which ironically, Oldest became,eventually). Finding a good specialist that listens to you and is willing to go to the ends of the earth with you to figure out what's wrong, is the only thing that works. Unfortunately,finding that specialist can take months or years.

I have been in the ER with various family members well over 100 times. Admitted family members to inpatient hospitalization, dozens of times. I have dealt with countless doctors and hospitals and nurses. I can tell you that the best thing you can do is to educate yourself, be firm but respectful, and ask questions. Ask again if you don't understand the answers. Ask what they would do it if were their child. Just keep trying. At some point, based purely on the law of averages, you will find someone who will help.

That doesn't make it any less exhausting, however. Many hugs to you.

[GoingNorth]

Actually, doctors and clinics can refuse to provide services BECAUSE this is the United States. We have no intrinsic right to health care in this country.

Most medical care is available through networks of one sort of another, but even then, there is the right to refuse treatment.