Sunday, September 25, 2011

"I'll need to give you a demonstration on the Epi-pen"

Starting a full time job awhile back really cut into my blogging time.  Not to mention my ability to think about something other than work, my own kids, feeding them and keeping the house clean.  But then, about 2 months ago...we moved.  From east to west.  Virginia to Oregon.  So here we are.  And with a new place comes a new allergist.  Two kids, loads of complicated history.  I think we tend to overwhelm.

Our first visit to the allergist was Friday.  We started with Owen, which in hindsight was part of our mistake.  So by the time we had waited in the lobby for 35 minutes (Max and Owen are not good waiters)  I was already annoyed.  Which was apparently evident as the nurse immediately started to explain that they were running behind.  Which leads me to our second mistake.  I had been figuring the appointment to take an hour and half tops and had scheduled Max's first drum lesson for later in the afternoon.  You are right I shouldn't have scheduled anything else that afternoon.  I don't know what I was thinking.  I guess part of it is that food allergies are so much of a part of my life, I just expected I would go in there, say test for this and this and this.  His asthma seems fine right now.  Read through his records and catch yourself up.  I wasn't counting on needing to go through ALL of the history AND being questioned about it.  I guess on my part another mistake.

She wanted to start with his asthma history and it quickly became evident that she didn't think we were doing enough or that he had been monitored properly.  They wanted to do various lung function tests and add an albuterol inhaler.  They also think he needs one at school.  Though he never has needed one in the past.

As we started in on the food allergy history, I felt I was put on the defensive immediately with her questioning why I had even had him tested to begin with.  Throughout she kept interrupting (to go along with all the times my two children were interrupting).  I kept losing my train of thought and felt myself getting flustered and nervous.  But when she interrupted me to explain how RAST testing doesn't indicate severity and history is the true indicator of a food allergy I had to pause.  She then asked me if I had ever had to use the Epi-pen.  I said no the one time Owen needed it we were at the allergist and she did it.  Her reply was "Okay then we will need to do a demonstration for you before you leave today."  I was taken a back.  Really?  I have been raising children with food allergies for 9 years and you think you need to demonstrate the Epi-pen for me?  I exploded a little in a flustered unproductive not very helpful way and explained that after 9 years a knew a lot about food allergies indicating Max and his somewhat healthy 9 year old self.  And that we had seen some of the best allergists on the east coast.  I could kick myself for that.  I SO don't want to be east coast and it may have seemed like I played a "the doctors are better on the east coast" card.  Friday night I lay in bed going over how I could have done it all better.  Because you see, we have moved to a much smaller pond and this is the only pediatric allergist in it.  We may be stuck with each other.  Which means I need to do a better job building this relationship.  And at the same time she needs to recognize that I know what I am doing.

I know we are new to her but we are not new to food allergies.  When I said I had never had to use the Epi-pen perhaps she should have replied "Wow, then you've done a great job on managing these kids food allergies."  Doctors need to realize that as parents of children with special circumstances we live with it for 24/7.  We manage their food allergies everyday and in that educate ourselves over and over.  Not to mention demonstrate that damn Epi-pen for every grandparent, babysitter, teacher, parents of their friends, coaches, etc.  Anyone who is alone for any length of time with our kids get a demonstration.  Give us some credit.  We already do know something.

5 comments:

OneArmedGraphics said...

That sounds an exercise in frustration, but good to see you could look at it in hindsight and learn from it.
Good on ya, and good luck.

CarlyWriter said...

I just stumbled across your blog and wanted to say, though we haven't changed allergists, I found myself nodding along with you since I had a similar encounter with my daughter's school nurse lately. My daughter just started Kindergarten and was diagnosed with food allergies in January. We've managed so well over the past several months. Between convincing the pediatrician that she had these allergies (and having to explain why we took matters into our own hands in having her tested), I didn't expect to have to do this all over again with the school nurse. She basically asked why we even had her tested to begin with; then questioned why we didn't have to use an epi-pen/benadryl/inhaler, etc. When I told her about my daughter's allergies and how we've managed them (with help from our allergist), she just kept asking me the same questions over and over again. It was almost as if she didn't believe us -- you know, if you don't need an epi-pen for your allergies, they must not exist. When I told her that I would have the allergist be in touch to go over any other questions, she nodded. When the allergist called the school nurse, the nurse said, "I have no idea why you are getting involved. The mom can just talk to us." I was floored...

While it's sad that there are so many of us "in the same boat," it's nice to know we're not all rowing alone.

Travel Guy said...

Just found your blog while putzing around. I have horrible allergies and sinus problems but I cannot imagine how you are dealing with FOOD allergies with two young children and how hard it must be to tell them they can't have certain foods. Good luck to you and if any anyone is interested, my site is at What am I allergic to

Carolyn Clement said...

My husband and I both have allergies and now have a 9 month old with several food allergies. I know how frustrating it can be to have to go over his history and he's only 9 months! I can't imagine having to share the history of 2 children and trying to establish a relationship with a new allergist, especially one who doesn't seem to give you credit for all you've done for your kids to keep them safe.
Good for you for keeping a clear head and remembering what is truly important.

foodallergychronicles said...

I also have stumbled upon your blog and I must say I am thoroughly enjoying reading about your life with food allergies. My boys have also never needed to use the epi pen. Back in the day,(my eldest is 15) he wasn't even prescribed an epi pen and we relied on Benadryl for years. Even after we got one, we still used the Benadryl at the first sign of a reaction. Due to this, many family members do not believe my boys to have food allergies..."Well you have never needed to use an epi pen?" Thankfully, their allergist, after hearing my predicament, stated just what you said,"Well, whatever you are doing, keep on doing it because it obviously is working." This also referred to my rant to him that I often get the feeling that family members think that I am 'crazy' for doing what I do to keep my boys 'safe'. Keep up the good work...we are our own advocates for our children until they themselves can take over. Susan H. @ the food allergy chronicles