Friday, April 26, 2013

Food Allergies and Fearing Doctors

We have seen a lot of doctors in the past 4 years.  We saw quite a large variety of doctors and specialist when we were searching for a diagnosis for Bee and we saw even more doctors after she was diagnosed.  And let's not forget the ER doctors and EMS we've met during allergic reactions.

We haven't always had great doctor experiences.  And.........I've come to fear going to the doctor.  They will either misdiagnose Bee, scare me to death, or completely brush me off.  So, I've found many of them to be more of a hindrance than a help.

Let's recap:
Our first pediatrician thought I was nuts - huge brush off there
Dermatologist - We saw a total of 15 after presenting at grand rounds at a medical center.  They were no help!
Pediatrician #2 - Finally did allergy testing - no good news there!
ENT - This doctor told me that Bee wasn't old enough for any medications he wanted to put her on and then he told me our crazy diet was impossible to follow.
Immunologist # 1 - not a fan and it was mutual.
Immunologist # 2 - equal parts helpful and depressing.
Immunologist # 3 - Finally helpful

I'm afraid that the doctors will not help us.  I'm afraid of doing this on my own without helpful resources and someone who encourages me.  I want to know that we are doing what's best for Bee and it give me a sense of relief when the doctor and I are on the same page.

With doctors, I first feared that they would not know what was wrong with Bee.  It was obvious that they didn't know what was going on as they continued to misdiagnose her.  But I also feared that they would refuse to listen to me.  I began to research on my own after talking with several doctors who refused to examine the root of her issues.  What I found frightened and overwhelmed me.  I was afraid that the doctors would think I was overreacting.  I was afraid they would not take my questions seriously.  I was right to fear these things because I had some doctors who were quick to dismiss Bee's skin problems and one doctor who outright laughed in my face when I ventured to suggest food allergies and fungal skin infections.  (I later learned that I was correct on both counts....).  It was scary to strike out on my own and begin questioning the doctors.  Several times I told them a bold, "NO" when it came to treatment options or certain tests or medications.  In my heart I believed I was doing what was best for my daughter and I took on the medical community on my own.  I battled so much fear and doubt as I would disregard medical advice and continue searching for an answer to satisfy me.

I did find a satisfactory answer with one doctor and with another doctor we agreed on a plan of treatment that was satisfactory to both of us.  We finally found a doctor who correctly diagnosed Bee and started us on the path to discovering her multiple food allergies.  It was the answer I had been looking for but when those test results came back I knew a completely different kind of fear.  I had a strong suspicion that Bee had food allergies but looking over her test results was devastating.  At that moment I realized just what a battle we had before us.  I had been right and the doctor validated all my fears.  But at that moment, it wasn't what I wanted to hear.  I now had the answer and I knew the results were correct but it's not what I wanted.  No, I did not want these food allergies.  I knew I was right but I so did not want to be right.  At that moment, I wanted everything to go away.  I wanted to believe the other doctors when they brushed me off and told me it was nothing more than severe eczema......nothing else wrong with Bee.  It was just eczema - not the life-changing diagnosis of food allergies.  Funny how my fear shifted and I was now more afraid of the doctors confirming all my fears and suspicions.

I still have moments of fear and of wondering if we're doing what's best for Bee, but I do have peace about our path.  In the end, I was right about the diagnosis and I'm comfortable with our treatment plan.  Currently, Bee is on zero medications, her skin is clear, and she's very healthy.  I never thought we would get to this point during those few years of searching for a doctor who would truly help us.  But I'm grateful we found someone who listens and who cares about Bee.

What do I fear most?  I'm not sure if I'm afraid that the doctors will be unhelpful....Or, if I'm more afraid the doctors will actually be helpful - and in so doing, tell me news that I don't want to hear.


strongdee said...

I've had similar experiences! My family doctor told me that my son would grow out of his allergies by the time he was 6 months, then a year and then 2 years. This was her idea of medical advice. I finally went to a naturopathic doctor and have made some hard earned progress through meticulous allergy testing, diet changes and homeopathic medicines. When I went back to my doctor, she noted the improvement by saying, "looks like he's growing out of his allergies"!!

Lexi said...

It's always interesting to see what the doctors say. Some have not been worth our time. It's hard to find one that is on the same page as you and works to actually listen to you.

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