Saturday, April 21, 2012

Parenting a Child with Food Allergies Part 2: Mom of the Allergic Child

You can read about how we discovered our son's first food allergies here in Part 1: There's Something Wrong. After our son's first allergic reaction and an oversimplified diagnosis by our pediatrician, we had a few months to wrap our head around everything.  I'm embarrassed to say it now, but I felt shame. It's hard to admit, but I think it's important for me to let other moms know that's a normal feeling. I felt like I had produced a defective baby and was embarrassed. Of course, my love for him didn't change for an instant, but I was hesitant to tell family and friends about his allergens.  I'd known of other kids in my childhood who were 'sickly', and they were really frowned upon by my family and especially my mother. My mom never directly said it was a result of poor parenting, or over-parenting, but I definitely got that impression.  Not to mention all the things they say on the news that supposedly cause food allergies, too clean/too dirty, breastfeeding/not breastfeeding, un-natural labor, environmental factors, etc.  It was hard for me to believe any of these explanations because my son was so clearly born an allergic child.  Nothing made him this way, he had these allergies from the very beginning.  It's laughable that my house is too clean. He never had formula, and I seriously doubt that my parenting in the first two days of life caused it.  It's hard not having an explanation, but you have to get past it.  It becomes a part of daily life, and I don't ever have feelings like shame or embarrassment any more.  In fact, I can't imagine him any other way.

We had a lot of reactions in between that first visit with the pediatrician, and our first visit with an allergist. We realized benedryl needed to be carried at all times, and facial swelling with each allergic reaction continued.  It made each reaction terrifying. Each time I'd wonder if the swelling was going to stop.  Other parents of kids with food allergies are shaking their heads right now that we didn't have an epi-pen, and when I look back, it kind of angers me that our pediatrician even saw a photograph of a reaction and didn't recommend an allergist or an epi. 

Here are the only photos I have of reactions during this time.

We never figured out what caused this, and you can't see the hives, but you can see he rubbed it into his eye. We weren't carrying benedryl this time, so pic was taken during the mad dash home.
Ugh. This reaction. UGH. It was a super mild reaction, I'm not sure we even used the benedryl. What we DID do was put hydrocortisone cream on his face to treat. I later learned you should never use that stuff on the face because it can discolor the skin. ARGH! He looked like he had chocolate on his face for over three months!

Facial swelling/hives. This is just what it always looked like almost every time. (In the pic he's passed out from benedryl) 
I eventually demanded a referral to an allergist (I demanded, but our doc is super easy going. I could have just asked).  Then we had to wait a month for the appointment.  Our history of poor medical professionals led me to do a tremendous amount of research during this time. I wanted to understand everything the allergist said, and be able to ask the right questions and agree with any suggested treatment plan. It was during this time that I found the forums at the Kids with Food Allergies Foundation. The other allergy moms there were so much help to me in preparing for my first allergist appointment and beyond.  Every time I had a problem, a question, a worry, or just needed to rant, they were there. They're a harsh group, used to literally fighting for their children's lives, and they won't mince words if they think what you're doing is unsafe.  At first I was intimidated, but over time I could listen to their advice and still feel confident in my own decisions.

We finally met our allergist and I liked him immediately. It's hard for me to trust doctors and I still research everything he suggests to be sure, but so far he's been really good. We did simple skin testing at our first appointment. Skin testing is not recommended or accurate for kids under 12 months, but he was 16 months by the time we got an appointment.  The allergist recommended we test only for the top 8 most common allergens, and we decided to also test for peanuts and tree nuts. A total of ten skin pricks. I went into the appointment hoping for a blood test instead of skin, but now I'm so glad we just did skin.  For us, skin testing is so much quicker, easier, and more accurate.  Ds was not in pain when they were doing the pricks or as they began to inflame, although he did get annoyed the nurse was behind him instead of playing with him.

Pics from skin testing.

As you can clearly see, he tested positive for milk, eggs, and peanuts.  This explained some, but not all of our mystery reactions. We had a final diagnosis. Now we just had to come up with a treatment plan. How hard could that be? lol.

To be continued in Part 3

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