Friday, October 28, 2011

It's a team effort, but you are the captain!

As you can see from the Medical Timeline, we started by asking questions at the pediatrician's office, then we were referred to a dermatologist, and later to an allergist.  Have you ever heard the saying, "when you're holding a hammer, everything looks like a nail"?  Well, the pediatrician thought it was a general problem (a little rash/eczema, a little milk intolerance), the dermatologist thought it was just eczema and not caused by food allergies, and the allergist, well, the allergist is lucky, because we already had our blood test results in hand when we went to see them, so we knew she had food allergies at that point.  However, the first allergist we saw didn't think to give us a home nebulizer (for her asthma issues) which we were given by the Urgent Care staff, after my daughter's accidental exposure to milk protein.  I suspect if we had taken her to a gastroenterologist, they would have suspected some GI issue.  Each doctor has missed something along the way.  It's not that they were wrong, necessarily.  They were just missing the big picture. 

Even if they miss things, sometimes, you need that team of healthcare experts, to give you pieces of the puzzle.  I believe all of them have something to offer, especially the pediatrician, who has access to your child's general history (growth charts, immunization records, colds/illnesses, etc.)  The problem is, they are all really busy people and don't always put 2 and 2 together.  Doctors often have just enough time to listen to the list of symptoms and provide a treatment recommendation.  The truth is that they often just don't have time to sit back and think about why the symptoms are occurring in the first place.  For the most part, I suspect that they see plenty of children who are doing just fine, aside from the occasional cough or cold.  They don't deal with specialty problems, day in and day out.

Even though I have a great respect for doctors, I believe the most important member of the team, the captain of the puzzle-solving team, is YOU.  YOU (your child's primary caregiver) are the one who goes to all of your child's appointments, you are the one gathering all of the pieces of the puzzle, over the course of the various office visits.  (If you share that duty with more than one person, then you need to convene regularly to compare notes!)  Each doctor or specialist is only seeing their piece of the puzzle, and those puzzle pieces are all mixed in with others from other boxes.  They get to spend about 15 minutes with you (yes, I am generalizing) and have the daunting task of making a diagnosis with the limited amount of information they may have been presented.

As much as we'd like to rely on doctors to help us, we need to do our homework and "help them help us".  I know it can be an overwhelming task, but we have to take the information we have and Google things and try to make sense of it.  I don't think we should self-diagnose (or diagnose our children's conditions), but I think we need to gather as much information as we can, to provide our children's healthcare providers with leads that might spark something in their minds and lead to a diagnosis/treatment.  If the doctor isn't cooperating as well as you'd like, gently persist in your quest to have tests done, or to get a referral to a specialist.  Here are some excerpts from Dr. Robert Wood's website:

"If your GP seems reluctant to refer you to an allergist, don’t be quick to blame your insurance company. In most cases, your GP’s reluctance is based more on the fact that your GP really does not believe that you have a food allergy. If your doctor is unwilling to assist you in obtaining a referral to an allergist, become more proactive. Contact an allergist yourself, and see if your allergist can obtain the insurance approval you need. "
"Remember: GPs often have the mistaken notion that allergists can’t perform allergy tests on children until they’re two or three years old. This is clearly wrong. The consensus of food allergists is that the GP should make the referral as soon as possible after concerns of food allergy arise, even in a two- or three-month-old. The medical community has plenty of evidence that early diagnosis and treatment greatly benefit children and their families."
Even with as much as we've learned about my daughter's issues, I know the puzzle isn't complete, yet.  My days are spent looking for new pieces and all the while, the puzzle itself is changing.  She's growing and changing at a rapid pace and I'm doing my best to keep up.  She's still struggling with allergic rhinitis, so that's our current target.  All we can do is keep on trying, gathering the pieces, working with the doctors, talking with other parents, hopefully improving things as we go along.  Maybe one of these days we'll find the box top!

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