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 I have some medical knowledge but it's limited and outdated.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.
Marg
