If you have found this blog, saying Welcome does not really seem appropriate. I know you wish you weren't surfing the internet for diabetes. I felt the same.

A big part of me wishes I were not writing about diabetes, nor did I anticipate to become so opinionated or informed on the subject, but it happened. In 2010, my son was diagnosed with Type 1 Diabetes.

It wasn't really part of the plan… Correction - it was not part of the plan, but it happened. It is not always easy, but I think we are all doing okay, and I hope we continue to do so.

Why the Middle East? I happen to live in Dubai. I don't think that living in the Middle East makes mine or my son's diabetic experience any more unique or challenging than it does elsewhere in the developed world.

I hope you stick around, or read something you like. Feel free to comment and join the conversation, subscribe or follow this blog by liking the Facebook page Diapoint.

Please note: This blog does not give medical advice. I am opinionated, and I share my experiences, but the first rule of diabetes is to follow up with your doctor and/or nurse educator about your care, diagnosis or medication. If you do not have a medical practitioner that is helping you find your way through this crazy world, then do not give up until you find the right one.

Friday, April 10, 2015

Advocacy and Doctors

As a parent, part of our job role is to advocate for our children.

As the parent of a diabetic child, you will come to understand a much deeper meaning of advocacy than you ever imagined possible. When your child is left out of a normal school activity because someone does not understand diabetes, when they are sick in the hospital and the doctor does not know how to treat DKA, when you ride an airplane and need to carry juice to treat a hypoglycemia (yes, they have juice on planes, but enter turbulence and you will not get any) on the phone with your insurance company to fight for critical supplies, or even something as simple as entering an auditorium that does not want you to bring in food or drink – you are the advocate for keeping your child healthy and safe.

Advocacy also includes general doctor visits.

One thing I have realized in the last five or so years since diabetes entered our lives is that I really do understand diabetes in our context. Yes, it baffles me at times, but 5 years of 24x7 caretaking…it happens.

Our first endocrinologist taught us how to be self-sufficient. Therefore, I can now partner with his current specialist in planning our care, and sadly I understand the in’s and out’s of diabetes just as good if not better than a general doctor whose specialty is not diabetes. I’m probably freaking out my cat’s veterinarian has he speaks to me about her new diabetic diagnosis. No one has ever asked him about DKA in a cat before.

I hate that we have gone to the Emergency Room and the head doctor opened a book to figure out what to do with a Type 1 child. While I hate it, I am thankful I have acquired knowledge to advocate for him and even suggest references to the doctor.

Any Type 1 caretaker that has been at it a while will likely have a similar story. We make decisions about our child’s care to the point where we have to anticipate what might happen when he is sick, travelling, stressed, participating in sports, attending a birthday party, sleeping and more. 

As the caretaker of your own diabetes, or the caretaker of a diabetic, although exhausting, we must make it our business to understand just as much if not more about this disease than the doctors you visit.  At some point in time, you will become an expert in your diabetes based on what knowledge is out there and what practical experience you have learned on the way. You will learn to ask questions rather than to follow orders.  You will become a critical part of the team that makes decisions in your child’s care.

However, there are doctors out there that you will come across that will always think they know better. In many cultures, “doctor” is regarded as the highest profession and can do no wrong.

I get that, and do not want to disregard their opinions. Doctors go to school a long time to become experts in their field and advise us about our child’s care. People go to doctors to look for answers.

Unfortunately, we are of that percent of the population where our learning curve and a general doctor’s knowledge of my son’s specific case cross, or in some cases we’ve passed it.

We experienced this again recently. We visited a generalist for something not diabetic related.  The first question I am asked was not about the reason for our visit, but what is what is his A1C. I understand he is diabetic. It is part of medical history for him, but that is not why I am there, so I do not wish to dwell on it, but he does.

The last was 7.1, which we checked during an endocrinologist visit just a few weeks before. While a nondiabetic is between 4 and 5.6, I know it will be some time before he gets closer to that.  I always strive for something below 7. Even though the world recommended standard recently changed from something in the 8 range to a 7.5, I will keep working toward something that starts with a 6. It is possible, as we have seen this number before.

His endocrinologist thinks we are amazing to the point we may not even consider a CGM right now.  However, I still want it to be better even though according to world standards we could be doing much worse.

But yet, from this doctor, the tone is completely different from his endocrinologist and I get kind of reprimanded about the result. Yes, I know as a diabetic my son risks heart disease, loosing eyesight, loosing a foot, shorter life span and all other kinds of complications if this is not managed. Exaggerated? Yes and No. This is the reality if I did not manage his blood sugar well. Believe me, I know.

My heart breaks on a regular basis for him, and it terrifies the crap out of me, therefore I fight it 24 hours a day just like other fully engaged T1 caretakers. Holding up my job as caretaker, what I don’t need from a doctor is a lecture or scolding. The reality of life is brutal enough to drive me to try to surpass any global standard. I don’t get a chance to really verbalize this because I am the patient and he is the doctor.

In addition to questioning our management of diabetes, I was not really heard for the condition I was suspicious that he had. My suggestion was disregarded because an in office quick test showed negative. Call it intuition or whatever, that thing needed to go to the lab for further culturing.

Still home from school with fever, we were back for another visit one week later as the symptoms did not go away. At that time, the doctor insisted there was more lab work to do because he was diabetic. Two failed, traumatic attempts to take blood from each arm, and a urine test, the infection that I suspected and suggested he might have all along was confirmed by sending a simple throat culture to the lab. (Had he not been due for an annual thyroid test in a few months, I would never have agreed to the blood tests).

I hang up the phone angry. Angry that my son had to endure this for two weeks, angry that he has to deal with a life of needles and had two extra ones that day for no reason, and angry that I did not press on because I did not advocate hard enough on that day.

Moral of the story. Doctors do not always know everything. Many have a general understanding of a lot of diseases, but a generalist in most cases will not understand the details of what you need for your chronic illness. This is why we seek out specialists that do have the depth.

But when faced with such situations, why are we hesitant to question it more, or speak out more? I Doctors may not like this as no one questions them, but we have to. Or if not question, politely probe to understand what they think rather than to just be given orders. It is our job as parents to partner with our physicians to understand the best treatment for our children.

Doctors are products of their education, and we are too. Two heads, or a team of heads really are better than one and if we take a passive role in that discussion and do not advocate for our child – whether that be trust in our parental instincts or discuss realistic benchmarks and suspicions, then in the end both doctor and care taker have done a huge disservice to the child.

In the end, we only set the child up for a prolonged treatment or misdiagnosis at that point in time, and it also teaches them to play a passive role in their care as they get older.

This disease is often a silent nuisance. Sometimes it is referred to as the “silent killer”. It is no joke and nothing will be managed if we do not get in the ring with it, even if that means questioning a doctor.

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