It is epilepsy awareness month. Right away, it brings to mind the delay in treatment Ella endured because the doctors were hesitant to believe that the cause of her strange, repetitive movements could be something as rare as infantile spasms epilepsy. And I think about so many of our IS brothers and sisters have similar stories of being dismissed or being told that it's "just reflux" or "an exaggerated startle reflex." To our local pediatrician's credit, he did try to tell the on-call neurologist at the Children's Hospital that he suspected infantile spasms in our daughter's case so that she could be admitted, only to be told to schedule Ella for outpatient follow-up in a few weeks (instead of dealing with it immediately as should always be the protocol with IS). I am thankful that Ella's outcome has been positive in spite of this, and were it not, I feel this delay in treatment would have been the cause.
I wrote the following open letter because of our experience as well as our many friends' experiences with accessing healthcare for their children. Feel free to repost.
________________________________________________Dear Pediatricians,
Many of you are very good at what you do. The sheer amount of information of which you must have a working knowledge in order to do your job is astounding. Often you've given up time with your own families to take care of the precious ones in ours. You advise, you intervene, you advocate, you heal, you immunize--all for the sake of children. And you are on the frontlines--an access point to this country's healthcare system, and usually the first to address any concerns we have about our children. And we are grateful.
We parents can be a mixed blessing, no doubt. A minority among us do not take care of our children as we should, and you are left worrying and hoping that the children will somehow thrive despite their circumstances. A vast majority among us, however, want the best for our children and do everything we can to keep them safe and healthy. It follows that we worry about every little atypical thing. Often the worry is unnecessary, and parental minds simply need to be put at ease. After all, the probability that "something is wrong" is quite small.
But sometimes, we are right. And sometimes our parental guts "just know" that something serious is not as it should be with our children. Please make room for this possibility and consider all the facts before dismissing our concerns. As the parent of a child with an "ultra rare" diagnosis, I can tell you first hand that these things do happen; how can you be so sure it's not the case with the child in front of you?
Please never stop seeking educational opportunities. Familiarize yourselves with the signs and symptoms of the rarest of the rare disorders, even if the numbers are slim to none that you will ever see them in your practice. Be willing to admit that something is outside your area of expertise; do not let your pride get in the way of what is best for our children. Treat our children as you would treat your own, and help us get the answers we need.
With sincere gratitude,
Megan Daniel
2010 ♦
