Monday, December 20, 2010

Time for a PSA. Also, a bit of a rant.

Last week when I worked, I took care of a patient that I just can't get out of my head. I won't be posting any details here to keep her story private. But I will say that despite her parents doing everything EXACTLY right, a very simple and easy illness turned into a debilitating disease because of doctors who missed things. Part of the reason I keep thinking about it is that it was such a tragic story, and part of the reason I keep thinking about it is that I almost experienced the exact same thing. It brought back so many memories of a time when I went through the same thing.

Jack was a scrawny 2 year old who had been through more than his share of illness. He was coughing and sputtering all thought the night, running fevers, and basically just displaying all the signs of pneumonia. I took him to a doctor, who told me he had a minor virus and to take him home and not worry about it. I tried my best to argue with her and explain that even when he is at his sickest he still smiles and plays. Despite my efforts, she did not take me or my child seriously. I then spent the day in agony- I KNEW he was sick and needed medical attention. I KNEW he probably had pneumonia. I knew he was going to get worse if not treated, and he was already pretty bad. After spending an entire day debating with myself and discussing it with everyone I knew, I finally took him later that day to an urgent care. Luckily we saw a doctor who DID take his illness seriously. He gave him a shot of antibiotics, a chest x-ray, a breathing treatment, and two prescriptions for antibiotics and more breathing medication. He also kept him at the urgent care for a while and said if he didn't improve immediately he would send us to the hospital. Quite the different picture from a "minor virus".

But the thing I keep thinking is: What if? What if the 2nd doctor hadn't caught it? What if he told me it was nothing or just a small ear infection? I almost believed the 1st doctor- if a second had said the same thing, I would have believed them. I would have taken him home and his infection would have taken over his already weak lungs.

I tell people all the time, and I am reminded again- YOU have to be the one in charge of YOUR OWN health care (and, by extension, the health care of your children). If you have a fantastic doctor, that is awesome, but it does NOT take away your responsibility. The best doctors can miss things. The best doctors only know what they know- they might not be able to treat the thing that you need treated. Here are some random bits of advice:

--If your child is sick, and you feel they need treatment that they aren't getting, see a different doctor. Go to a different doctor in the same practice, go to an urgent care, try the emergency room if it is serious enough. One doctor telling you it is nothing may be completely wrong, and it is up to you to seek other help.

--It is sad but true: Doctors treat the patient they see. If you are in the office, and your kid is jumping up and down and smiling, they will not believe how sick they are. Even if you tell them they have been lethargic and feverish and stuck to the couch for 3 days, and this jumping is not only the most active they have been, but is also a result of massive tylenol and advil infusions, they still treat the child they see. The great doctors will take your symptom description seriously and believe you (the bad ones won't), but even the great ones will take into account the fact that the child is up and jumping and smiling.

I will tell you my trick. When I think it is something simple like an ear infection, I go ahead and give them the fever medicine and take them in. When I think it is something more serious and they are really sick at home, I withhold the medication, and I wait for them to spike a fever, then take them in to either the doctor or the urgent care. That situation above with Jack? Part of the reason I got such aggressive care the second time is that I stopped the tyl/adv and waited for his fever to spike. It is SAD! To know that you can give a dose of medication and your kid will perk up in 30 min, versus just laying like a limp rag and burning up. But the truth remains- doctors treat what they see. When that second doctor SAW the lethargy, and the fever hit, he was much more willing to treat Jack. The first doctor saw him laughing and playing as a result of medication, and treated the child she saw.

--Reporting a fever. The first question any doctor will ask is: How high has their fever been? This is a diagnostic tool- viruses generally give lower fevers- 99-100's. Small infections, like ears, UTI, etc will generally give fevers 101-102. When the fever gets to 103/104, it sometimes means a more aggressive or serious infection. How can you manipulate what you report? DON'T LIE! You never want to report a fever as more than it really is. However... it can be manipulated. Sometimes a doctor will ask you WHERE you took the temperature- but usually not. Here is why WHERE matters:

Normal temps: oral- 98.6, rectal- 99.6, under the arm- 97.6, ear (wildly erratic and unreliable- please don't use that method), forehead- 98.6.

As you can see, if your child is running a fever, their mouth will tell you 101, under their arm will only say 100, and the rectum will be 102. Just this difference of location will vary the temp by 2 degrees! If you tell your doctor the temp is 100, they will check the ears and throat, but they will be suspecting virus. If you tell them 102, they will check things like throat and lungs a little closer, and they will look for things other than a virus.

Doctors like numbers. If you say "they have been breathing really fast" or "their heart was racing", they understand what that means. BUT- if you take the time to count- and can tell the doctor "he was breathing 60 times a minute" or "his heart was beating 170", those numbers will tell them a LOT more than vague descriptions. It does not take medical training to do these things- look at a clock, start counting (put your hand on their chest to help), count how many times in 15 seconds, then multiply by 4. They always want to know the "worst"- the highest number, the highest temp. The more details you provide, the better they will be able to treat you/your child.

--Watch what the doctor is doing. When they listen to the chest, are they listening in spots all up and down, front, back and side? Are they doing a quick examination or a through one? Are there things that would impact not getting a good exam- like the child won't open their mouth to see their throat, they are crying which means you can't hear the lungs, etc? The default is to do the best they can and if they can't see something, they usually just don't worry about it. That is fine most of the time, but if you think your child is really sick, you need to make sure they get a good exam. The first doctor with Jack? She spent a good 30 seconds listening to one spot on his chest, and saying "take a deep breath... breathe in really deep". He didn't do it- he was 2! But I knew that meant she couldn't hear any sounds in that part of his lungs. It could have been a result of 2 other loud kids in the room and him not breathing deep. But in his case, the absence of sound is because that is where the pneumonia was. You hear pneumonia by NOT hearing breath sounds. It is your responsibility to make sure that the doctors do their job.

--See a specialist. If your child has a lot of ear infections, go to an ENT. If they have allergies, see an allergist. Your primary care doctor is a fantastic resource, but they can't possibly know everything. Specialists are there for a reason, and more people should utilize them. Most people I talk to say "it isn't that bad" or "she is doing okay". That is not enough. You should take them to see people who are experts at what they do. It is not disloyal to see a different doctor- it is taking charge of your own health. Even if the treatment ends up being the same, at least you know that you have explored all the options.

--Look at ALL the options. Abigail's allergies were horrible until I found an herbal supplement that was better than all the prescriptions put together. Diet has a huge impact on just about every health condition. Your doctor will generally not know anything about other remedies, but Dr. Google can give you all kinds of information about it. Talk to people. Do reasearch. Educate yourself.

Wow, this is really long! I have another post about fever management- but I will write that another day! Can you tell we have been sick a lot this past month?? :)


Merilee said...

Such good advice! When Cade was 18 months I took him in, I knew he had croup, because he had had it a million times before. On call doc checks him, and tells me it is asthma--i take his diagnosis, as well as a breathing machine, steroids, etc. He doesn't get better, I knew it was something more, took him into on call doc that night, and sure enough it was now croup & pheumonia. She admitted him, and took the name of the previous doctor, because anyone who has EVER heard croup knows what it is. She was furious, and so was I. I agree that you have to be ab advocate for your child-doctors are human, and they make mistakes too! Good post!

Valerie said...

Julie (RarelyHomeMom) has a link on her Facebook about this post so I followed it over. Thanks for all the awesome info!

Rebecca said...

This is really great advice! Thanks for writing it!

Emily said...

Thanks Shanna. Seriously, I always underestimate my "mommy radar". We know what's going on. Just sometimes I get timid when it comes to talking with a doctor because I assume they always know what they're talking about. Thanks for all of the tips and tricks. Seriously. I really appreciate this post!