Work With Your Doctor
ByAs a doctor who works every day with kids and teens with ADD/ADHD, I come across many issues in my office which I can blog about. Sometimes I take certain experiences, and turn them into articles, and other times I don’t.
Yesterday, I had an experience which was so difficult and frustrating for me, that I wanted to share it with you…
I do this for two reasons:
1) To let this out (i.e. catharsis)
2) I hope that this experience will help you to work more effectively with your doctor.
In our hospital based clinic – generally it is up to our patients to rebook with us. People will sometimes cancel – and our secretaries will definitely call them to reschedule. However, if someone doesn’t come back, and doesn’t call to book a new appointment – we do not chase people down to get them to come back. In Canadian healthcare – if it is a dentist’s office – they will send a reminder post card after 6 months, but that’s generally not done for medical doctors. I don’t know how that works in the US system (please share your experiences in the comments section below).
Yesterday, I saw a young man who I had seen only once before – 9 months ago. I saw him once, and I suggested a medication change, and I asked him to come back in 4 weeks. He didn’t come back. I also asked him to see our therapist. He came for about 3 appointments, and then stopped. When he came in yesterday, he was angry that he was feeling so badly, that he needed a solution NOW. In other words – I had to fix his crisis. Part of my problem was that I hardly knew him. Seeing someone once 9 months ago doesn’t equip me well to know what’s going on in his life, and what can be done to get him out of his current crisis. If he had been coming approximately monthly, I would know him well, have an understanding of his strengths, and his supports, we would have found a medication which worked well for him (hopefully), and then we would be much better equipped to handle this crisis.
To top it off – he is now over 18 years old – and once that happens, in our clinic, he needs to get referred to the adult side of the clinic.
While discussing the situation together yesterday, he told me that he didn’t come back because he had concerns about medication side effects, and concerns about Psychiatry as a whole. I explained that I’m fine with people questioning these things – and I’d rather he came, and kept me in the loop, and that we worked together to avoid the crisis he is in right now. I was really focusing on this point to help to use this scenario to teach him how to handle working with a doctor – so that when he meets his next doctor soon, he can work with him to get the right care that he needs, even if he doesn’t agree with everything the doctor is saying.
It is OK to disagree with, and challenge your doctor. It’s important to do that with the doctor directly, so that you can work something out. Not doing this, and then coming months later when there is a crisis creates a very unworkable situation.
If you’re reading this post – you know that doctor’s aren’t perfect. We make mistakes and we do our best.
When can we make our best decisions?
When we know you really well, and we have a good working relationship, because we’ve worked out any differences in opinion, reviewed options, and created a treatment plan. In my experience, the best treatment plans are created when they can be personalized because I know my patient very well.
The case that I’m referring to – there’s a lot of complexity to it, and I’m not going to reveal one tenth of it – for the sake of privacy. And although many bloggers just rant a lot on their blogs – I have to show some restraint, as a practicing and licensed physician.
Now, there will be times that your doctor is not the right match for you, and you may have the option of switching doctors. Or, it may be that in your community, or with your insurance, this doctor is the only one that you can access. Whatever the situation is, I recommend that you work with your doctor. Work with him or her, explain your concerns, and challenge them as well. You need to advocate for yourself, because if you don’t – who will?
In my experience, the vast majority of doctors will respond well to a well thought out objection. Most doctors don’t respond well to angry, hateful and rude comments. And as I write this, I’m thinking, I don’t really respond well to people who refuse to take any responsibility for their own decisions and healthcare. In other words – when this young man made this situation MY crisis, even though they haven’t seen me for 9 months and didn’t book again, and are now too old for our clinic. I do respond well to people who completely disagree with my treatment recommendations, yet explain it clearly, logically and thoughtfully. I keep seeing them if I think (and they think) that it is still of benefit.
I just want to emphasize how important it is to keep working with your doctor – even if you don’t always agree with him or her. Also – take responsibility for your own decisions and actions. I know this can be an issue for kids and teens with ADHD, though it’s still very important nonetheless.
Now, I did work with this young man, and his father who was present, to create the best possible solution to help with this crisis. We created a plan, and a back up plan. The appointment went way over time, and I know that if I had been seeing him regularly, that we would have had a much better crisis plan (but we still would have gone way overtime in our appointment 
).
Please share your thoughts and experiences below.
All the best,
Dr. Kenny
@Katie – your post resonates strongly. We have 4 generations of ADD – grandmother, son, grand daughter, great grand daughter. My cousins show classic ADD traits as well. So it’s all over the family tree, clearly genetic. Grandma will be 90 in 2 months and still has nights where “her brain just won’t let her sleep”.
ADD and middle age female hormones is a special hell as I’m discovering. Finding a doc that has any clue much less specializes in adult women with ADD and understands the additional challenges added by menopause? At this point in time I don’t think it exists.
But to your point – finding the right ADHD doc/therapist in the U.S. is so difficult because most practitioner’s treat a range of things and ADHD is 1 of their 10 “specialties”. Marriage, depression, OCD, ADHD. Usually turns out they specialize in family therapy with ADD on the side and they often have a broad but shallow experience that’s quickly insufficient.
I fantasize about finding a practice that is fully focused on ADHD, can work with adults, and understand the particular issues for girls and women (Sari Solden and Kathleen Nadeau’s writings have literally saved my sanity). Oh, and that I can afford it – since it seems everyone wants to charge $150 and up an hour – out of my ability to afford at present, and few US insurance plans will cover it.
Good post Kenny!
I think all practicing physicians understand that patients who do not invest in their own well-being will more often than not fail to get better.
We tend to tolerate our problems until something big occurs or the pain, discomfort or inconvenience of having the problem becomes more than we can bear or want to tolerate.
Just as in your patient’s case, it’s often a crisis that leads us back to action. Likewise, once we take action, most of us want an immediate fix for the discomfort caused by such a crisis.
Good health care is indeed an investment best made by forming a trusting relationship with your health care team- your doctor, nurses, and therapists and other medical associates.
Keep up the good work.
Dr. Frank
P.S. Kenny, maybe this experience will give (or renew) your appreciation for what it’s like to live with a person who has untreated ADHD, who takes no responsibility for his/her problems and who blames everyone in his/her line of site: It is galling, dispiriting, frustrating, and unfair.
Thank you for expressing your frustrations and ranting.
I just wanted to add one comment, I have a son with ADHD who at 17 thinks that he is an adult in many ways but he is really a child in many other ways. He hears a recommendation that he should have counseling from his ADHD doctor but tells us later that he will refuse to go to the appointment. Sometimes we can not get our children to do what is best for them until they are in crisis. We, as parents, can make appointments for our children but if they refuse to go,it is not like we can make them go since they, as teenagers, tend to be bigger and stronger than us. I believe that most boys do not mature until much later in life…well past the age of 18. It is too bad that once they turn 18 they have to leave their ADHD doctor who in fact has been the one doctor who understands them the most.
Hi Jo, and thanks for the rant, Dr. Kenny!
Jo, there is help with your hormone hell: If you would like some solutions that worked for me, please read on:
Step one: Read Suzanne Somers books on Hormone crashing, ‘the Sexy Years’ or ‘Ageless’ as well as “What your Doctor does not tell you about Menopause” by Dr. John Lee MD
Step 2:
Go to ZRTlabs.com and order your self a full saliva test hormone panel.
They will mail you a kit, which you mail back, and ZRT will email you a comprehensive analysis of your results in pdf form of what is going on with your body’s endocrine and hormonal system. Most problems can be solved with Bio -Identical Progesterone, which you can get made for you (once it is prescribed by an MD that is up to speed and is not terrified to prescribe medication not produced by ‘Big Pharma’
Bio-Identical progesterone is made from plant sterols (not Mare’s urine like prescribed estrogen) and is identical to what your your body used to produce before you stopped ovulating. Like Vitamin C, it cannot be patented, so the pharmaceutical companies try to discredit it and would like to shut down its production because they can’t make a buck off of it. Because there is no profit in it, generally only university medical schools have tested it, because generally pharmaceutical companies pay for testing. (Dr. John Lee is the source of these comments, and was instrumental in getting stopped the Women’s Health Initiative Study when it was proved that the Pharmaceutical hormone therapy was causing cancer in women that were part of the study.)
Hoopers Pharmacy is a compounding pharmacy that can make it for you, or what ever other hormones are recommended for you.
Dr. Alvin Pettle of North York, On., is a specialist in this area, and Joe Hsu, the Pharmacist at Beaches Hoopers can fax or email you a list of other physicians whose knowledge in this area is ‘current’, as it is hard to get an apt. to see Dr. Pettle, and sadly, not enough Physicians have bucked the trend to learn about this therapy.
When I hit the brick hormone wall, I was on a six month waiting list to see Dr. Pettle, and to accelerate things, had a consultation with Nina Filipczuk at Hoopers pharmacy in Mississauga. After reviewing my saliva tests from ZRT labs, she then wrote a letter with recommendations for bio identical hormones, and a list of supplements, that I took to my understanding Family Doctor. (I learned that taking Magnesium totally eliminates those chocolate cravings!) I was such a mess, not sleeping, ADD making me scattered, depressed, itchy skin, no libido, no memory, irritable, hot sweaty flashes and chills…. after 4 days on the new program of bioidentical progesterone and a lot of supplements, the symptoms were almost gone. My mental focus, and emotional and physical balance came back into balance significantly, within another couple of weeks. That was five years ago. I continue to monitor my hormones, and take supplements that support my brain, liver and endocrine system, and avoid foods that I am allergic or sensitive to.
A good chunk of ADD issues for menopausal women can be relieved by having one’s hormones balanced. I occasionally take Ritalin, but am not finding it very effective. I tried Concerta as well, and found it made me feel like a speeded up focused stupid person.
Dr. Kenny,
I want to bring my son into see you, particularly after your honest and cleansing rant. He has just turned 18, and is struggling with his studies in first year Electrical Engineering at U. of Toronto. He is also a classical music singer, and got a choral scholarship at U. of T. We meet the address requirements. I have been giving him neutriceuticals since he was diagnosed 8 years ago. He was tested by
Felicia Travis, a Psychometrist and Psychologist recommended by his school, RSGC. She did a great job writing the report, and our son now has the accommodations and extra time needed to increase his chance for success with exams at university. He barely passed his first term, using neutriceuticals, Ritalin and Concerta, and found the latter to be of only minor use with focusing and organizing his day and work. He lost weight and became quite upset and agitated, and was having disturbing thoughts while on the meds. He is seeing a Psychiatrist, who is next prescribing Strattera and Dexedrine to see if that helps. Dr. Kenny, my sense is that you have an expertise in prescibing meds that would help our son to find the right one.
I have also ordered some neutriceutical products I found from a link on this website of yours,Dr. Kenny, called “ADD-care with Bacopa”
This product can be used with meds, apparently, so we will try it out.
Thanks again for the rant! Transparency with Physicians like you is uplifting, refreshing and a reminder we are all human. I also empathize with the frustrated disorganized behavior of the patient, as I have seen this in my son, and is part of the ADD syndrome, it seems.
By the way, do you recommend supplements, such as GABA, and Pantothenic Acid,to help your patients on Concerta sleep? We have also found Ghanda (www.aor.com) to be a very good anti stressor supplement for the nervousness generated by ADHD meds.
My feeling here is that there is a synergy to be found with each individual, in the use of meds, supplements, exercise and cleaning irritants and allergens out of the diet that make our kids worse. (worked for us anyway) and I would like to work with you, Dr. Kenny in finding that solution for our son and to improve my own focus consistently. Thanks in advance for reading my long tome, and I look forward to your reply. Best wishes, Marilyn L.
Are doctors “Mr. Fixits”? Should patients look to their doctors for information and advice and keep looking so that they can, in the best way possible, take control of their own health.
Dear Dr.Kenny,
As a psychologist and mother of two sons with AD/HD, I too, have been in similar situations many times. After I get fed up with the latest missed appointment, explosion, blameshifting episode I try to get myself hopeful again. To try to see that this is part of the process and to have faith (literally) that this person will usually rise again to their best. I also know that this cycle will occur again…
Thanks for your open and honest “rant”. Be well, Dr. Kenny.
Well, Doc, I can see your point, and of course, I generally agree with your point about patient follow-up. In my experience here in the US it seems that the general practice is not to chase after patients who miss appointments and don’t re-schedule. There are, however, exceptions. Your dialogue on Dr./patient relations is also taken very well by me, but here again there are exceptions. Now I’ll bet that a comment or two about these exceptions is probably expected, and, hopefully, desired as well, because that’s what is coming. Would you like the good news or the bad news first?
Well, Doc, I believe in happy endings, so here is the not-so-good scenario which deals with the Dr./patient relationship topic. I am presently 59 years old, and I have ADD. I’ve had it since I was about 6 years old, and I was diagnosed, tested, and treated when I was 55. My life now, what is left, is wonderful beyond compare, beyond anything that I could have previously even imagined. It’s very cool, and hopefully my children will start to speak to me again sometime soon. I’m sure that you probably know where this is going, so I’ll get to the point and get it over with. So it’s now @ 1988 and in 1985 I’ve been blessed with twin daughters. I have been running my own business for the last few years, but as always like everything else it started out great, but is now floundering. I’ve lost interest, in fact I now hate it, I’m drinking way too much and way too often, and the depression is getting worse, much worse, and I don’t know why. My twins’ mother doesn’t appreciate any of this very much, says she doesn’t understand how someone as intelligent as me can allow this, just throw my life away and her and the twins with it. Lazy, irresponsible, selfish are the words being used more and more. I had to do something so got another job , now had health insurance (finally!) so off to the doc I go to get this figured out. Somethings definitely wrong, has been for a long time, but I have no clue. The doctor, an internal medicine guy, I end up going to for the next 4-5 years, and he seems to be a very nice, concerned guy. Gives me pain meds and antidepressants. Which ones? Whatever is new and popular at the time–Prozac, Paxil, Wellbutrin, Elavil, etc. None of it works, so he says to cool it on the drinking, that’s the problem. I finally ask to go to a mental health person, and he says no, I don’t need it. He does send me to a gastro guy, who does an endoscopy diagnoses Barrett’s Syndrome and puts me on Prevacid or something like that. My pcp is ecstatic, See he says, that was the problem. You’ll be fine now. But I don’t get the connection and decide not to ask, because by this time I’m convinced he doesn’t know squat.
I’m on my own now, girls and their mom moved out but I still see them fairly regularly. I decide to move across the river to Washington maybe get a new look which might do me some good. My new doctor is very much like my former doc as far as the treatment is concerned. But he’s a bully, threatens me all the time says he won’t treat me if I don’t do exactly as he says, and he won’t refer me either, because he says my problem is the drinking, and if I would just grow up and do what’s right, blah, blah , blah. Soon I want to hurt this guy. He obviously doesn’t care, and he won’t listen. At least he doesn’t hear what I say. He knows everything, I know nothing, and I’m sure the HMO is controlling him and his decisions. Probably has kickback incentives for not refering people to a specialist. I see him for a few months and then I am gone. That’s it for me. Not just from him, but from all doctors. They’re all just arrogant, greedy puppets, who in most cases know less than nothing. I’m done. At least that’s what I thought.
A couple of months later I,m at home and I get a phone call. It’s a nurse from a doctor’s office in Portland who tells me I’m due for some test or something. I tell her she has the wrong person, I’ve never even heard of the doctor. She hangs up, but 2 days later she calls again, and even though she knows a lot of information about me, I just don’t remember. She hangs up again, but next day she calls again! I finally give in, at least I’ll go and check it out. With my current attitude towards doctors firmly entrenched, I head out for the appointment. It turns out to be the gastrointestinal guy who I had only seenh twice about 2 years prior. He says it is time fir another endoscopy because those with Barrett’s have an extra 25% chance of developing cancer. So I go and have the test, and during it he says there’s a little spot that seems a little discolored, so he had better do a biopsy just to be safe. Two nights later I get a phone call. It’s the doctor who informs me that the little spot was cancer! So I end up having my esophogas removed, and between the surgery and recovery it took about 8 months, and it was brutal. But I’m alive, and survived a form of cancer that in 1997 had a morality rate of about 80-85%, and as of last year I am still cancer free. And all because a persistent nurse and doctor chased me down and wouldn’t quit.
So those are my comments on those two points that you had mentioned. My current doctor and I have a very good relationship, which is almost more of a friendship. There is nothing that I would not ask him or discuss with him, even something as diverse as what is his opinion of stem cell research. I really hope that I didn’t bore you too much, but I needed to say these things. Thank you.
Here are some responses to the comments added recently:
Gina, excellent points. Your first comment is really dead on in many ways. Your second comment is also quite insightful. Thank you for your contribution. As an aside – someone emailed rather than commented, and said ‘Gina’s comment is great – makes me want to read her book’
Rachel – I’m sorry to hear you’re shocked. Yes, you’re right, you haven’t heard the family’s side of the story. The reality is that you haven’t heard my full side of the story either. When I wrote this article, I did it for two reasons – one – to let it out (I was frustrated, as you know), and two – because I thought it could be helpful for my blog readers, and create a good discussion. Certainly, we’ve had a good discussion, and several of the comments have appreciated the discussion and found it helpful.
Dr. Frank – thanks for such a well worded explanation. That is what I mean
Marilyn – Thanks for sharing your insights for the other reader who had issues in her comment. Regarding your son, as I mention in this post – the clinic I am currently working in only goes up until teens reach 18 years old. Then they go to the adult side. So, your son is too old for my clinic. We stick to the age ranges and guidelines for two main reasons (in my interpretation) a) that’s what we’re funded for, and b) we are constantly getting urgent and emergent referral from the emergency department, as well as community referrals – so to meet the needs, we have to stick to our mandate.
David F – That is quite a story. I’m glad to hear that a good doctor and his team literally saved your life. I hope that persistence around the ADD treatment will also change your quality of life, and the quality of your relationships with your kids in particular.
As I have read the comments and responded to many of them over the past 2 days – I am glad in many ways that this blog post has created such a dialogue. Some people have appreciated my transparency, and taken a lesson from this situation. Others are ‘shocked’ and expressing concern that I would write such things.
One other principle that I like to use in my life and in my practice is to not waste a good crisis.
Yes, you read that right – don’t waste a good crisis.
When it comes down to it – when a crisis happens, it creates a situation for real, serious deep learning. The ‘real life lessons’ kind of learning. The kind of learning that can really make a difference in someone’s life and future.
When this young man (and his father) came in to my office in the way that they did – I got frustrated. That’s a fact, and a human reaction. As I reflect back on what I said and how I handled it – it was because I didn’t want to waste a good crisis. I had the opportunity to share information and make some points which I thought were necessary- around taking responsibility for one’s health, etc. And I truly believed that our discussion would be helpful for this young man. It wouldn’t make him happy or pleased in the moment – but it would be helpful in the long run.
When I first wrote this article, I don’t think I realized how much of a risk I was taking when I did. Doctors are trained to be right, and to present ourselves in ways which show that we’re right.
I didn’t do that here…
I shared a situation, which didn’t portray me as right – in fact it could be interpreted (and was by some of you) that I was wrong. That’s practically against the hippocratic oath.
In many ways, I’m glad I did, and in some ways, I’m not.
I will continue to write lots on this blog, and share much news, ideas and opinions.
I’ll spend some time reflecting on whether I’ll write a post like this one again.
When I think about the reasons that I wrote this article – as stated right in the beginning – 1) catharsis, 2) learning for you. I will definitely continue to post articles that meet the second criterion. I’m not sure I’ll write any more which meet the first criterion (i.e. catharsis).
We’ll see…
And with that – I want to thank all of you who have contributed to this discussion. It is much appreciated – whether you appreciated what I wrote or didn’t – I have benefited from your insights.
And now, I’m going to exercise my right as owner of this blog, and close comments on this post.
Best,
Dr. Kenny