Wednesday, November 9, 2011

We are the 1 Percent - Medically Speaking

I know the 1%/99% business has been a heated topic of discussion, lately, but I am not here to discuss any of that.  This is a bit of a rant, though.

The 1% that I often think about, is the group of people that are often ignored/dismissed by the medical community.  The terms "1%" or "rare" are said to me so often that I am usually quite irritated when I hear them.  It really irks me for a doctor to tell me that something is "exceedingly rare" or that it affects "only a small percentage".  The reason it irritates me is because they are usually telling me this when they are trying to dismiss a suspicion, or a concern of mine.  I also read similar accounts from other mothers seeking answers, so I don't think I am alone.  They go to their child's pediatrician, only to be told everything is "normal" and that they doubt the mother's suspicions that something is amiss.  I was told that "many babies have trouble with milk, but it's rare to have a true milk protein allergy" and that "only about 1% of eczema cases are caused by food allergies".  Now, if they want to tell me that something is "rare", yet go on to investigate my suspicion, that is fine.  I'm not averse to hearing statistics, as long as they are not provided to me in order to dissuade me from investigating something further.  I'm not trying to toot my own horn, but almost every single time I have taken my daughter to the doctor, something has actually been "wrong" with her.  I might not always know what it is, but I know when something is up.  I didn't know she had so many food allergies, but I knew what she was experiencing wasn't typical.  I wouldn't expect "typical" results from my daughter, anyway.  She is the product of a "1%" mother.  Actually, I have a rare neuromuscular condition that actually affects less than affects only .001% of people.  Here I was, wondering if she would inherit my condition, and she decided she wanted her very own! ;) 

Just because something is rare, does not mean that it does not exist.  If you take the population of the United States, that equates to roughly 3 million people.  If you take the population of the planet, that is about 70 million people!  One percent is quite a large group.  Why do some physicians think that they could never be lucky enough to encounter one of the 1%ers, in their career?  On top of that, food allergies affect well over 10% of children, nowadays, so physicians need to update their statistical references.

I guess I do carry a little bit of bitterness over the many misdiagnoses I had as a child.  Doctors would say "she just wants attention" or "she'll outgrow it".  They just didn't know what to make of my symptoms, and I understand that, but why not just say "I don't know" and run some tests, or do some research?  I was usually sent home to breathe in a paper bag, or something equally useless.  I do not expect every physician to know every obscure condition.  I don't expect an episode of "House" when I visit a doctor.  All I ask of doctors is that they take their patients' (or patients' mothers') concerns seriously and take a moment to order a test or two, or listen attentively to the description of symptoms.  I didn't get a proper diagnosis for my condition until I was 18 years old.  I had all but given up on finding out what I had, until I saw an ER doctor at age 16 who took the time to ask me questions and run some tests.  His initial diagnosis was incorrect, but it started the process and I later met a neurologist who figured it all out.  Those doctors who take the time to listen and investigate and who do not dismiss patient concerns, are the ones who help me retain my faith in the medical community.  

To the "other" doctors, I say - I understand that the chances may be slim for many things, but why not listen to a mother's instincts and check things out when you are asked?  If she's wrong, so be it.  At most a little time and money is wasted.  At best, valuable information is obtained and treatment and lifestyle adjustments can begin.  Also, sometimes you just have to rule things out, in order to get to the answer(s).

Moms (or dads or caregivers) - take the time to find a physician who will take your concerns seriously and perhaps even humor you a little, if you aren't quite on the right track.  If you have limited access to physicians, try to work with them to get their attention.  Keep asking questions and don't let them dismiss you.  Speak up for your child.  There's no need to be rude about it, but you can gently insist when necessary.  We, the 1%, need to be heard!

P.S. I have another post discussing the 95% chance of peanut allergy based on test results alone, and you might think I would wonder if my daughter is in the "rare 5%", but I just don't think she's quite that lucky and the risk of proving that theory is too great.


  1. YES, YES, YES! Totally agree with you! We received the same response about food allergies causing, or triggering eczema. Our children are both case in point and I believe that 1% is actually way higher. Our first few doctors didn't believe us until I proved them wrong.

    Parents instincts are worth pursuing!

  2. Yes, for our children, I agree that the numbers are much higher than 1 percent. I did consider titling it "We are the 10%", but it's more about the sense of "rarity", in general, and the point that statistics don't matter, when you happen to be the rare individual. I'm glad you made yourself heard! Thanks for the comments. :D

  3. I am new to reading your blog and totally identify with it. My son is 20 months old and developed a eczema at around 3 months of age. Our doctor and then dermatologist didn't mention food allergies and just prescribed Vasoline and hydrocortisone. Then we took matters into our own hands and I went on an elimination diet, which vastly improved things, and we went to an allergist. He is allergic to a ton of things including wheat, eggs, soy, nuts, lemon, flax, mango, peas, lentils, and more.

    My main question for you is how do you determine whether something is making your daughter's eczema worse? My son gets hives if he's eaten something he's very allergic to, but it's hard for me to tell what is aggravating his eczema. We are using 1% hydrocortisone now, which keeps things at a completely acceptable level, but I would like to get things to a place where we didn't need to use it.