ever try your doctor and can't get him??

Discussion in 'General Parenting' started by Jena, Jan 31, 2008.

  1. Jena

    Jena New Member

    hi everyone,

    so i had a little bit of thing with difficult child tonight i posted it under manic episode. she's under control for now we'll see how rest of night goes. Yet i couldn't reach my doctor at all......none of them.

    does anyone ever find that their in a position inbetween medications, weening off, starting new one that their difficult child is displaying troubling medical behaviors, anything at all high heart rate, etc. and you try to reach your pysdoc and can't???

    just wondering if anyone has this problem at all........

    i was thinking would it be possible for us to make links to drugs on this site?? maybe there is one already and i haven't found it? like a drug interaction chart thing and stuff, listing side effects...that would be cool.

  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Sorry you were unable to get a hold of a doctor. We have been fortunate and always been able to get in touch with-our psychiatrist or one on call when needed. Hugs.
  3. Marguerite

    Marguerite Active Member

    Jen, when it comes to referencing medical information you really are on your own. Sorry. It's just that we're not medical experts here, we're just parents like you. I have some medical knowledge but it's limited and outdated. Plus you and your child are not here in front of me, even if I WERE qualified to diagnose.

    BUT - help is available. It's not always reliable, but the 'Net is a mine of information. I would start with product information, preferably from the company which makes the drug in question. And if it's during business hours, you can always ring them and ask to talk to their medical advisor. But if you do, you need to try to not sound panicked or anxious, you need to sound like someone who can think scientifically and analyse the situation.

    The Internet is amazing, for the information which abounds. But you need to know how to use search engines effectively. This won't be wasted, either - being able to research well will make a big difference when your kids hit high school (if not earlier) and you can help them learn how to research online also.

    An example - let's say you've just started a new drug, Folderol. You take it and notice something different in how your body responds. Is this coincidence? Or is there the possibility of a real problem?
    Certainly, call the doctor. If he's unavailable, talk to the pharmacist who dispensed the medication. Here in Australia, our pharmacists are equipped with information which can connect every medication they've dispensed for you, with a database of all possible reactions, interactions etc.
    If it's after hours and you can't wait, you CAN call the local ER, but chances are they won't give any info over the phone, and will tell you to come in to see them if you're concerned. If you're seriously concerned, save the phone call and just go in.

    Or you can do your own online search for information. Now if you're already computer-savvy, ignore what follows. But I'm putting it here because I'm amazed at how many people who email me regularly, who don't seem to know how to do a search properly.

    Go to a search engine. I will use Google as an example.
    Into the "search" field, type - folderol interactions contraindications - and see how you go. This will search for any site which has SOMEWHERE all three words. If you put those three words in double quote marks, such as "folderol interactions contraindications" you would get no hits, because you would be looking for THAT SPECIFIC PHRASE. But if you reduce the search to "folderol interactions" you would increase your chances.
    Or you could try - folderol "specific precautions" - which will search for any site which contains the name folderol, plus the phrase "specific precautions".

    What you should be getting, is the drug information leaflet from the company. If you know the name of the company, you can also plug that into your search (outside the quote marks) to refine your search.
    But let's say you suspect there are problems with this drug and the company is a bit slow in telling people - you want info from OUTSIDE the drug company. What you will get - mostly bulletin boards or consumer websites. These are a lot less reliable because the information is anecdotal. NEVER base a medical decision on anecdotal information. It's actually illegal here in Australia, to market medication (or anything for which a therapeutic claim is made) using anecdotal references. You know the sort of thing - "I had hairy palms until I tried washing them with ACTISOAP, and now hairy palms are no longer my problem!". One case does not a cure make, and you don't even have a way to verify if that letter is genuine. You certainly don't have access to the whole story - maybe using the product has made their whole body hairy. Or maybe it's just a new-fangled term for 'acid bath' and they now have no skin left. Never trust anecdotes in selling treatments.

    So you can do some digging yourself, find out what you can. It can help A LITTLE, but you should always refer any problems to someone medically trained, preferably the person who prescribed the medications.

    Which brings us to your second problem.
    The doctor won't get back to you.
    been there done that. And it's normal to feel really desperate and also begin to feel resentful, because this is IMPORTANT, blast it. The trouble is, it's not important to the doctor. They see the problems on a broader scale, spread out over ALL their clients and the need to be able to respond to everybody and also meet their own needs for sleep, etc. The doctor may or may not get the message that you rang and want them to call back. Perhaps you explained the story to the receptionist, but you can bet that person didn't have the time or energy to write a really long explanation. They would only have written, "Jen called about medication change concerns. Wants you to call back ASAP." Meanwhile there could be 20 other messages in similar vein - "I'm feeling really desperate, don't know what to do, please call."
    The doctor has to make choices, based on the little info provided.

    So here's what I do - I write it down. Keep it to one page or less, but put the main points down. "doctor, I'm concerned - we're weaning off Drug A according to the regime you set, and we've begun Drug B working up to the dose you asked, but I've noticed the following three problems...
    • . What should I do? Is this a drug interaction, or a withdrawal problem? Should we stop Drug B and go back to Drug A until we see you? Please let me know, I can be contacted on... or emailed on... Regards, Jen."

      Then fax it. Don't email - it can get lost among all the joke emails, the spam filters etc. If you don't know the doctor's fax number, ring the secretary and ask for it. Explain you REALLY need to communicate with the doctor and this is the most efficient way to do so. (It's also a more professional way, and hence likely to get a faster response, than you would get in a scribbled note from the receptionist - which, by the way, is also there because when you asked for the fax number, you would have also asked her to make a note for the doctor to ring you).

      This letter works better than anything else. It's fast - the printout will be curling onto the IN tray faster than the receptionist can transcribe your concerns. You've communicated the important points - the concern, the question, the contact info - but not so much dross the doctor can't find the main message and deal with it pronto.

      And if all else fails and the doctor doesn't respond, and there is a disaster as a result - you have proof in your fax log, that you sent a message in plenty of time and the doctor's failure to step in has led to the problems.
      You are covered. And you can relax, knowing you've done everything possible to communicate the issues.

      But it is important to keep your message brief and polite, give the important information without too much dross, and finish with a reasonable request - what you want the doctor to do.

      I've had to do this a lot of times over the years. Sometimes the doctor STILL won't respond, but if he doesn't, at least I know he has access to the full story; generally his failure to respond tells me to maintain the status quo. And often, the doctor has rung me within the hour.

      And finally - remember how it feels when you are in seeing the doctor, and the consultation is constantly interrupted by other patients calling in. Some doctors seem to do this and it drives me nuts. But a doctor who does this is also going to be far more likely to answer your call. A doctor who is hard to get hold of is generally the one who DOES give you his undivided attention when you are in seeing him.

      Don't over-use this, try to save it for really serious concerns. I know you wouldn't "cry wolf" but if the problems are always trivial (from the doctor's point of view), the doctor will learn to ignore your faxes and may one day miss the really big one.

      Good luck with this one, I hope you get your concerns answered soon, one way or another.

  4. Jena

    Jena New Member

    i'm glad you get your doctor, i used to get my old one all the time, this new one is untouchable it seems.

    Marg - thank you for all that information i appreciate it. pls. don't misunderstand i know we're all just parents trying to figure it all out. i think i just meant a link to drug charts, etc. was just an idea. i look it all up each time go thru clinical trials all that good stuff.

    i do have to get more organized though i'm finding with my papers, i was used to our old apartment wow it was so pretty but anyway i had spot for all my stuff. here only spot i have is my dresser drawers. i'm going to get folder now.

    thanks again
  5. susiestar

    susiestar Roll With It

    Jen, drugstore.com has a pretty good database of medications, reactions, etc... WebMD might also.

    Our pediatrician is in a large group. Latenight calls drive me nuts - you call, hold, get transferred to a receptionist 80 miles away. They have the nurse (80 miles away) call you, then the nurse cannot give you ANY info, and you have to be forceful to get them to page the doctor in your town on call.

    Annoying as it is, it is STILL better than the service at our ER, where the favorite medication is benadryl and usually they TELL you that you are wasting their time!!!!

    I hope you can get some answers via fax.


  6. Sara PA

    Sara PA New Member

    Googling "[Name of drug] patient information" will give you hits for the summary of the prescribing information in normal language.

    Googling "[Name of drug] prescribing information" will give you the prescribing information/insert/label (whichever you call it) which is the same information that doctors and pharmacists have access to and contained in the PDR. Language is more technical.

    MedlinePlus is a site owned by the U.S. National Library of Medicine and the National Institutes of Health. It has a section on drugs, arranged in alphabetical order. It is written for the consumer.
  7. Marguerite

    Marguerite Active Member

    The sites Susie suggested are good. They can also give some more independent information, since the drug company's own leaflets can sometimes make it sound like the best thing since sliced bread.

    However - starting at the drug company's own info on the drug is a good start, I find.

    We've also got a publication service called MIMS, not sure if it's just Australia or if it's international. It's available to all doctors and pharmacists but I used to get my hands on one as well, it was very useful for info on contraindications, specific precautions, drug interactions, adverse reactions - the whole bit. You needed to know the abbreviations and the technical terms, although these days with a good online medical dictionary, you can learn a lot.

    Technically I'm not supposed to have MIMS, but my previous GP was always happy to give me the previous year's publication. He knew of my many adverse reactions and was happy for me to have it, so I could double-check everything I was prescribed. A couple of times I found a potential for problems when the doctor himself hadn't realised. For example, when I was last in Emergency, on New Year's Eve, they wanted me to take antibiotics. husband had given them a written list of what I can take and what I can't (by sheer fluke he happened to have a printout handy and had given it to the ambulance driver, it's a copy of the paper tape I carry in a medallion around my neck). So the GP had, in writing, a list of allergic reactions. She came in to me and said, "We're going to start you on X, you should be OK with that one."
    I replied that I wasn't sure, I thought I had problems with that one and she said, "it's not on your list."
    It wasn't on my list, not by that name. It WAS the same drug, however, under a different name. I could have taken it and had a severe anaphylactic reaction. It was my concern, plus the nurse double-checking it against my list and using MIMS, that pulled the plug on it.

    A drug is released under one name, but when the patent expires it can be sold under a number of different names. Being allergic to one is allergic to all - the chemical is the problem. Telling them, "I can't take aspirin," should mean that they won't try to shove Tylenol or Aspro down my throat either. mother in law can't tolerate any opiates - "Don't worry, this is only pethidine, you should be fine," she was told after heart surgery. The complications from having the wrong medication kept her in hospital for two months, when she should have been out in two days. This failure was not just the nurse - it was the doctor who ordered the drugs too. And yet - it was on her charts, she was also wearing a big red tag on her wrist that said, "no opiates". So I really do hear you on wanting to oversee and double-check medications when you are concerned.

    I also hear you on wanting info in some sort of central database. Chances are there is something like that somewhere, but they will not be letting the general public have too easy an access to it because we're not medically trained and can get the wrong end of the stick. MIMS is the closest we've ever got, to anything like that. Plus information is always changing, new drugs are coming onto the market and others going off. Trying to keep something like that updated would be awful.

    Part of husband's job is to keep track of a similar sort of database, which he wrote. It's not for medications, it's for other things, but he has to constantly track traffic of various substances as well as keep up with any related health and safety information. It's a huge job for him, also requiring cooperation with all other database users (which he doesn't always get).

    easy child 2/difficult child 2's gastroenterologist reacted a bit to me, when he was telling us what he thought might be wrong with easy child 2/difficult child 2. He was explaining about the test she had to have done and she wasn't understanding, so I said it again in ways I knew she WOULD get - and the doctor just looked at me and said, "You know too much."

    And now I have to see the same doctor! It will be interesting, for sure.

    Keeping files on record - if you can, scan them. And make sure you back up those files onto a CD.
    We have a filing cabinet next to the computer. You can also use one of those cardboard expanding files. I remember back in my student days, we improvised shelves out of boards and bricks. I've made bookends out of wine casks, cut on the diagonal and stuffed with books (especially good for kids books). You can use the wine cask method to keep paperbacks under control. You can paint over the labels, or cover them in plastic contact. I don't drink, but I use casks of wine in my cooking, I slowly accumulate more than I can use.
    Just as the wine cask is an Aussie invention, so is the wine cask bookholder/bookend!

    Good luck with the doctor getting back to you; or at least, you getting some answers.