Discussion in 'General Parenting' started by susiestar, Jan 7, 2010.

  1. susiestar

    susiestar Roll With It

    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 appointment. 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 medications. 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 medication 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 medication 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 medication 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 doctor stopped doing them and they were done at the hospital. NOT the doctor 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 appointment for us and insist that Dallas and this doctor'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 appointment even though her limbs are going NUMB and staying that way for hours.

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

    I did take a list of medications - 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.
  2. Marguerite

    Marguerite Active Member

    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 medications, but he should have done his best to findsomething to try, that could help relive her pain.

    The pain specialist that husband & 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.

  3. DaisyFace

    DaisyFace Love me...Love me not


    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 therapist's office, or at the intake at the psychiatric hospital 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!
  4. TerryJ2

    TerryJ2 Well-Known Member

    I can't believe you are in OK. I would swear you are at my cousin's hospital 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.
  5. timer lady

    timer lady Queen of Hearts

    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.

  6. gcvmom

    gcvmom Here we go again!

  7. Josie

    Josie Active Member

    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 doctor 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.
  8. KTMom91

    KTMom91 Well-Known Member

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

    CrazyinVA Well-Known Member Staff Member

    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.
  10. GoingNorth

    GoingNorth Crazy Cat Lady

    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.
  11. okmeme

    okmeme New Member

    We live in OK also and have had incredible luck with the pain management doctor and the neurologist and all the other docs we have had to deal with for my husband at a hospital in OKC. My brother is a doctor and he suggested the ones we needed to see and they have all been great. Sorry your experience was so bad. I hate arrogant docs who never listen to anything the patient has to say or have the "time" to really assess the patient. Having to go to Dallas for testing seems ridiculous to me, especially when there is a great neurology center at the hospital we use. Would be glad to share some names with you privately if you wish. Anyway, hope that whatever you choose to do finds some relief for your daughter very soon.
  12. tawnya

    tawnya New Member


    The same thing happened to me when I was incapacitated due to migraines. I went from my regular weight of 125 lbs. to 90 lbs. during this time. I went to the GP, the ER, an internist, a neurologist, then finally the "headache clinic". After 8 HOURS of testing, he told me that I wanted to be sick and suspected that I was an addict. I had so much pain at the time, that the pain medications barely got rid of it, and never made me "high".

    I got up, told him that just because he had a certificate on the wall, it meant nothing to me. I slammed the door and left, forgetting that ex-husband was still in the room, LOL.

    I eventually went to the chiropractor and divorced my ex, and the headaches slowly went away, well for the most part.

    It just infuriates me when they won't listen, when you know yourself/your daughter better than any of them. I would complain. Everyone has a boss.

    Poor Jess.
  13. susiestar

    susiestar Roll With It

    You all have good points.

    Okmeme, I would love to have names. I agree that going to dallas is stupid. Just stupid. If you could PM the names to me it owuld be great.

    I have a pain doctor and he is great. finding one for a child is different. They all seem to think that pain medications are evil. Sadly these "pain" docs are CAUSING our children to become drug addicts. They MUST find a way to cope iwth the pain. The pain can drive you crazy, literally into a nervous breakdown. So the kids turn to whatever they can get. medications from the ER, stealing, buying from drug dealers, etc....

    If they would just treat the pain then our kids would not be forced to use drugs. There are some studies that show this.
  14. TerryJ2

    TerryJ2 Well-Known Member

    Ask what they would do it if were their child.

    Do they really answer the Q, CrazyinVA? Just wondering.
  15. TerryJ2

    TerryJ2 Well-Known Member

    Good points, GoiingNorth.

    Often, for good reason. My husband has refused pts who have threatened his staff. We're lucky he's only had to call the police twice in 22 yrs.

    Funny thing is, people like that will eventually be admitted into a different kind of hosptal ... :anxious:

    If doctors are going to refuse treatment, it would be in their best interest to REFER to the correct specialist. Other reactions imply incompetence or disinterest.
  16. Marguerite

    Marguerite Active Member

    Susie, why can't your pain specialist see your daughter? Or failing that, recommend a name for you? Hopefully he would also have a quiet word with the doctor whose name he recommends, letting the bloke know that you and easy child are 'legit' and not drug-seeking.

    The problem is, there ARE a lot of patients out there who are drug-seeking. Plus sadly, many of them are parents of a disabled kid (or a pretend-disabled kid) and will use that kid to get supplies for themselves. Sad, but true.

    I've been doing my darndest to help a friend of difficult child 3's, a younger boy (he's now about 11) since he was a pre-schooler. The boy was diagnosed at 4 with autism (mild, high-functioning) plus ADHD. Finally the mum followed through and took him to the specialist who prescribed Concerta. Now, I happen to know that the mum does dabble in drugs occasionally - mostly pot. Any time her son is prescribed stuff (other than antibiotics) she will take it herself "just to see what it will do". In vain I point out that first, it's been prescribed FOR HIM and the supply is limited; what she takes, he misses out on (so she just leaves him without medications for a day instead); and second, that his brain works differently and the effect it will have on her is not the effect it will necessarily have on him.
    She was also cutting his Concerta in half. This had a little use in that it showed that the boy did better on a lower dose, but it DOES interfere with the sustained-release side of the drug.

    My point is - you and I might be responsible parents, but this doctor, especially if he's an ER doctor, will have seen too many of the other sort of parent to be willing to hand over pain medications readily.

    The problem - easy child needs pain medications, clearly (to me). I know you better than that doctor.

    WHat I think you need to do - build up a case with documentation form other doctors who have easy child's long-term history. She needs continuity of care with one doctor who isalso willing for an ER pain specialist to telephone him for confirmation.

    I had a nasty incident some years ago when we were on holiday in beautiful, drug-sodden Sunshine Coast of Queensland. I ate a dud batch of oysters (I suspect) and got food poisoning. Not too much of a problem for most people, but it meant my pain medications could not get on board. Day 1 the pain medications I took sat there mostly unabsorbed; Day 2 the pain medications were clearly not working well and over that day my pain was escalating badly. By mid-afternoon when the vomiting stated it was obvious nothing was absorbed because I saw the pain medications I brought back up (little white beads). We called a GP but we were on holidays and I was unable to get in to a surgery. So after waiting some hours and being told we'd need to wait a few more, husband called an ambulance which took me to the district hospital. We brought my diary which had my doctor's lettter in it (a letter on his letterhead which stated what medications I take and that if for any reason I can't keep those medications down, or I develop severe headache symtpoms, I need an immediate injection of antiemetic plus pethidine). I did not bring my bag with me as well with my oral medications - since nothing oral was staying down at this point.
    Well, the hospital put me under observation. They did inject an antiemetic which did not immediately stop the vomiting (thereby making it clear I needed injected medications). But, they told me, they had no pethidine. Yeah, right. Meanwhile there were car crash cases being wheeled in. and other injuries.

    Finally it was in the wee small hours, my vomiting finally stopped. I was a mess - they still said they had no morphine, no pethidine. They gave me a couple of Endone tablets which, for the state i was in, as little more than useless. But it was a slight improvement, enough for me to be able to get up and walk, assisted, to the car with husband. Fortunately it was not quite daybreak (the sunlight always made me a lot worse when I got to this state). We got back to the unit to my own supply which thankfully stayed down this time. I spent the day in bed recovering, all curtains drawn and blindfold on. easy child took the kids bowling for the day so husband & I could both sleep. I was so angry, I had been left in a lot of pain for far too long, because the hospital thought I was drug-seeking. The trouble is, addicts can put on a really convincing act, including preparing fake doctor's letters.
    But what they SHOULD have done, if they doubted the letter, was telephone the doctor and talk to him. A few questions on something medically technical would have ascertained his credentials. When I got back home and talked to my doctor, he said, "Why didn't they ring?"
    I said, "Maybe because by that time it was in the middle of the night."
    He said, "I take calls any time, especially from hospitals. Remember that next time."

    Unfortunately, he's no longer our GP - he moved, and now he's begun to specialise - in pain management and addiction medicine. By the time my current pain specialist retires, my old friend will probably have his position.

    The thing is, you need to think like a suspicious doctor and try to have the answers ready. Have her medical evidence there with you - actual X-rays indicating spinal problems or whatever, for example. Letters from the GP she sees regularly and who has her long-term history with him/her. And you need to be firm in what you want. "We need her pain managed. If you won't do it, tell us who she needs to see in order to get the help she needs."
    When they prattle on about addiction, make it clear that you know about the risks but are trying to keep her ALIVE. Try to downplay the suicidal bit though - strong pain medications can also be used to suicide.

    You probably already did a lot of this.

    Doctors are more scared these days of litigation, than of breaking their Hippocratic oath. Then there is the "First, do no harm" bit which they take to the nth degree and use to justify doing nothing. Make sure you tell the doctor who sends you away, that to send her away with nothing done IS to do harm.

    With doctors in general, you need to be concise. VERY. Up-front about what is needed. Do not diagnose, but instead say, "She has been diagnosed with...". It's a fine distinction.

    I also suspect, Susie, that you, like me, upset some doctors simply because we project an air of knowing what we are talking about. It's difficult to hide your own light but especially when dealing with a new doctor, sometimes we need to do this. I tend to do it by shrugging and making it clear, I am at the mercy of a medical system where other doctors tell me things which I am now relaying. Only when I know a doctor well do I say, "But I think it may have been X because of Y." I might even phrase it with, "Is there a possibility of Z?" Or "Someone suggested..."

    But when seeing someone new for something important like this, you need to be a tricky combination of concise, up-front but also not challenging.

    And with some doctors, you simply are never going to get what you need.

  17. tictoc

    tictoc New Member

    I'm so sorry it didn't go well. I hope okmeme has some good recs for you. I'll put some feelers out to friends and family in OK to see if they know of anyone. Good luck.
  18. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    Unfortunately, I did not learn that question/technique until much later in my girls' lives, so didn't get to use it at Oldest's worst times. Later, however, Oldest's surgeon was very good at answering it. He became my "voice of reason" when all else failed. But I did use it when my mother was dying.. and I was trying to make a decision about her health. Her doctor did indeed answer me, honestly I think. My own doctor answers this as well, with regard to my own health issues. He even offers it.. "if it were me, I would do X, not Y."

    Some doctors are too arrogant to answer .. some may be downright uncomfortable. But I think at the very least, it might stop them in their tracks, and remind them that they are treating a human being who is not that different from themselves.
  19. ML

    ML Guest

    What an emotionally exhausting day. I am so sorry, Susie. I just wish there was something I could do. I haven't been able to read everything lately so I'm sorry if I missed this, but when is the next neuro appointment?
  20. Iamwipedouttoo

    Iamwipedouttoo New Member

    I am so sorry this happened to you. Your poor daughter. :-(

    Hang in there. I think Marg had some great advice.