Stand Up and Advocate

Doctors don’t know everything.

There, I said it. If you would have said that to me three years ago I would have laughed at you. Surely, they spend so much time in medical school they MUST know what they are talking about, right? Well turns out – not all the time.

With my NT daughter, I am more inclined to believe in the doctors, but since having Superman I have also been more inclined to do more research to make sure I understand everything about what they are talking about. Are they wrong? Probably not, but I want to make sure.

But when it comes to special needs kids, especially I have found through Superman, most doctors don’t see rare things often. Especially often enough to know right off the bat how to treat them. Then throw in a huge mix of rare, complicated conditions. You know what I ended up with? A doctor asking me where my DNR form was. NOT my ideal treatment plan.

1. Research. Know everything you can about the conditions your child has. What the current treatments are, how they are used, what the side effects are. Know what the typical outcomes are AND the possible outcomes are. I am not saying you should become a medical genius. That’s not the point. It doesn’t matter what the kid next door is going through – you don’t have to treat them. Become an expert on what YOU treat. Your child. Sometimes that is the difference between keeping them alive.

2. Organize. When you have 12 different specialist treating 12 different disorders, there is NO way they are going to keep all of that straight. It’s not going to happen. Make sure you are the spoke at the center of the wheel. Know how each condition meshes with the other. Organize the information from each doctor in a way that you could relay it in the event of an emergency.

3. Prioritize. No that isn’t as cold as it sounds. Prioritize conditions from most severe in the event of an emergency to least severe. Obviously in an emergency situation, my son’s Cortical Vision Impairment is inconsequential. But his Addison’s and Diabetes Insipidus need to be treated IMMEDIATELY – regardless of the situation. Then treat the remaining issues. If his sodium is off or he has no cortisol, other treatments might not be effective, or the DI could kill him before the other treatments are complete. Severity is key.

4. Question. I live by the motto ‘question everything’. Not because I am trying to be a colossal ass. Because I need to know exactly what that treatment is going to do so that I can go back to the Organize part and see how it will play into the other conditions. A random attending might forget that he has epilepsy so some treatments he is unable to do. Plus this will help you KNOW what is going on so you can go back to #1 and know what you are looking for.

5. Remember that doctors don’t always know everything. In many cases they do, but they don’t know YOUR child. As a parent you know what they can tolerate, what will push them to their limits. What is acceptable and what is not. If you think something is wrong SPEAK UP. STAND UP. Superman is non-verbal so there is literally no one else to speak for him but us. Even something as simple as telling the doctor that he CANNOT tolerate continuous feeds. Long feeds over a pump, yes. Being continuously fed for 8 hours? No. He will reflux all day long. It makes him miserable. If he’s miserable, he’s stressed. Addison’s goes out of whack and he can’t fight whatever else is going on. Sometimes a small thing will make all the difference. You know the signs, looks, sounds your child makes better than any other person on the planet. You don’t have to be a medical genius to know something isn’t right and if you don’t agree then say so.

6. Discuss. I am not saying to flat out say no, end of discussion and get nasty – unless the situation calls for it. Open a dialogue. Tell the doctor, I don’t think it will work and this is why – reasons x, y, z. Now, tell me again what your plan is and if we can adjust it to reach the same goals. Why are you wanting to do your way? Doctors most of the time will appreciate the fact that you are knowledgeable and be open to discussing it with you. The plan of care is flexible and you are the primary caregiver. Remember that. And parent gut will scream louder than any medical degree most of the time. As long as you stay respectful, they will usually respect your opinions and views as well and come up with something that not only achieves their plan of care but makes you comfortable.

If Mama ain’t happy, ain’t nobody happy. (Doctors know this is true)

advocate

At the end of the day, its your child, and your responsibility to cover their care. We as a society have been trained to believe that doctors know everything and they are above reproach and unquestionable. And that is simply not the case. Some of our best doctors I go head to head with constantly. Respectfully of course and I have the best relationships with them and they trust our judgment implicitly.

But you can’t have these conversations without doing #1. You have to KNOW what you are talking about first. 

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