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Advocating For Our Kids: Being The Informed Parent

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You take your child to the doctor for a well visit, and your pediatrician recommends a round of lab work, just to cover a few bases because she has a couple flags.

The results come back, and you are told your child has a problem with their thyroid; hypothyroidism is what she calls it. She recommends starting a life-long medication immediately. What do you do?

Advocating For Our Kids

Anyone who has children has likely heard that we need to advocate for our children. I usually hear this around school groups, ensuring our kids get what they need to succeed academically.

However, anyone with a special needs child knows that advocating for our kids means in every aspect of life, including with our doctors.

So assuming our healthcare providers are trying to give the best to our kids, it is important to remember that our child is only one of the many patients they have. There are general protocols they have in place, but those protocols may not meet the specific needs for you or your kids.

The Responsibility To Be An Informed Part Of The Team

We have learned over the years that the best way to advocate for our kids is to educate ourselves, understand what questions need to be asked, and then move on. The unfortunate reality of the healthcare system in the United States today is that doctors are only given enough time to treat symptoms, rather than really explore what is going on.

Think about it, you go to the doctor, and you are lucky if you get 5 minutes of their time on a typical visit. They ask you a few questions, and then send you packing, usually with a prescription. Now understand, doctors get to bill the insurance company for more if they write a prescription, so if they can find something, they will, that is the business of medicine.

With our littlest one, who has Down Syndrome, we have really had to take the brunt of educating ourselves on what is actually good for him, what his unique needs are, and then bring that to our doctors. Unfortunately, there are no doctors whose specialty is Down Syndrome. Rather, they see a bunch of specialists who work with people with Down Syndrome, among many other groups. This means these doctors are often not versed in the latest research and understanding of this specific condition.

For instance, the above story is not far from our own experience lately. Our little guy was not growing like he should, and so the doctor ordered blood work to look at his thyroid function. The results came back with possible hypothyroidism, so she referred us to an endocrinologist. While waiting almost two months to see the specialist, we started researching the needs of the thyroid, and what may be the cause of an underactive thyroid. We found that if you are not feeding it properly (giving iodine in the diet), then it will not function properly (seems like good logic to me).

Do Not Back Down Until You Are Satisfied

When we brought this up to the doctors, both our pediatrician and endocrinologist almost immediately dismissed this as a possibility. However, we continued digging and found that most of the iodine containing foods is not what we were giving our little guy, so it is not unreasonable to think he may be deficient in this area.

So, we pushed more. The endocrinologist finally said that she could run a test to find out exactly how his iodine is, and see if in fact he is deficient. I won’t bother asking the question of why she didn’t offer this immediately when we brought it up as a concern. The point is there were other options when we kept pushing. Keep pushing to help the medical professionals you’re working with think past their standard protocols.

If You Don’t Advocate For Them No One Will

It is a nice thought that medical professionals will do everything they can to provide the best care for you and your kids. Unfortunately, it is just a numbers game, so you are the best person to advocate. Be sure to take the time to do your own research, find alternative opinions, and look for things that may be out of the ordinary protocols or approach that may benefit your specific situation.

What are your stories of advocating for your children? I’d love to hear from you! Share your story in the comments, or with me on Facebook at http://www.facebook.com/kimandjoshdecker/.

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