2009-05-13

An Allergy Story, Part 1: The Diagnosis

This week is devoted to Food Allergy Awareness, and I urge all of you who can to check out the Blogcarnival, Twitter Party, and other events happening this week. I love the way those of us who have only a diagnosis in common can come together to create resources and give each other support. So this feels like a good time to finally share the story of how we got here.
It's a little startling to realize that I've been blogging in my little corner of the internet for over two years now. Originally I was just recording recipes, but my opinionated self began to leak through. Eventually I began to share our allergy experiences as they happened, but I never sat down and wrote about the series of medical mishaps that landed us here in the first place.
I was a miserable 36 weeks pregnant and had just had a late afternoon appointment with my OB/Gyn. Afterward, I stopped to look at some diaper bags, then met my husband for dinner at a steak house. It was one of those places that serves free peanuts and has peanut shells covering the floor. My husband went gaga over the Eddie Bauer diaper bag with the fold out cushion for changing little tushies, which was so out of character for him that I just melted. Then I ate some really delicious coconut shrimp and went home for another uncomfortable night.
In hindsight, the scene just drips with irony. The next day I had an emergency c-section due to pre-eclampsia. My poor, blue little baby was rushed to the NICU, where he spent the next two weeks. (I'll always wonder about the peanuts and shellfish from the night before.) I spent that time trying to find a comfortable way to sit or stand next to his bed while recovering from surgery (there wasn't one) and waging the battle of the breast pump. When we finally were able to bring our child home, he was attached by wires to an apnea monitor and we kept him as isolated as possible for the first six months. We only permitted close friends and family, plus the home health nurse who came to jab him with the RSV vaccine, to visit him. Except for doctor visits, the diaper bag sat unused in the closet.
The week after coming home, my mom and I managed by a truly heroic effort to switch my confused newborn from a bottle filled with breast milk back to the original receptacle. Then we went to a check up to discover that he had stopped gaining weight, and we needed to supplement with formula. We stuck to the "pre-digested" milk based formula that the NICU had given on occasion, but the pediatrician suggested going ahead and using regular formula. I tried it one time, but my baby was so colicky and uncomfortable after one bottle, that I put it away. At the four month check up, my ped once again mentioned that I could certainly use the regular formula instead of the expensive kind to supplement. So I decided to try it again.
A few days later, I nursed my four month old, then handed him off to my mom to finish up with a few ounces of formula while I pumped to try to increase my milk volume, which was our usual routine. A few short minutes later mom frantically called me from the living room. My son had taken two swallows, projectile vomited, and rapidly became covered with hives spreading out from his mouth. We raced to the car and headed to the emergency room.
After the longest car ride of my life and an unconscionable wait in an empty room, we finally had a doctor stroll casually in, take a look at my bumpy red infant, and exclaim in surprise, "He's having an allergic reaction!" (Well, no kidding, Sherlock, did you think we were here for a diaper rash?) My son was finally treated with antihistamines and steroids, we were told to avoid the formula he had reacted to, and sent off to follow up with his pediatrician.
You'll notice that Dr. Sherlock did not keep us at the hospital for several hours after seeing him in case of a secondary reaction. He also did not discuss having medication on hand in case it happened again. (Four months may have been too young for an EpiPen, but we should have at least been given dosages for liquid Benadryl.)
When we saw our pediatrician, he told us that an allergy to cow milk was fairly common in infants, and my son would probably outgrow it by the time he turned two. He gave us dosages for liquid Benadryl, and advised us to avoid peanut products until he was at least three years old, since his odds of having a peanut allergy were increased by the milk allergy. My ped calmed me down, gave me sensible precautions, and left me feeling I could manage the situation.
It's probably a good thing that we didn't know what was coming next.

11 comments:

Maleah said...

I am looking forward the the second part of the story. I think that is is wonderful that you were able to breastfeed your son.

Jules said...

Can't wait for part 2! I am in the exact situation you wrote about in part 1 currently with my 9 month old son. What can I expect next?

shellyfish said...

Oh Libby, I actually got sick to my stomach reading this...I can really feel how horrible and scared and helpless you must have felt...

Jane Anne said...

Such a scary story- I cannot imagine that happening to my son at 4 months. We didn't discover his food allergies until he was a 1 year old. Looking forward to reading the rest of the story.

It is Food Allergy Awareness Week. Read my latest allergy post: Thursday Thanks Tank: Allergy Thankfulness

Nicole said...

What a story! You have had to conquer so many things! Recovering from a c-section is hard enough when you have a healthy baby. I can't imagine how you felt rushing him to the hospital at 4 months either. Wow

Debra said...

I just found your allergy blog, and love it. I have a 5 year old with too many food allergies to list, but reading your entry today reminds me of the early days. I am looking forward to reading all of your recipes!

ChupieandJ'smama said...

Very scary!! But really reminded us of my sons beginning months. Why are Dr's and Peds so ignorant when it comes to food allergies? So frustrating :(

EclecticBird said...

I’ve only had to deal with my own allergy problems and thinking of my sweet boy (16 months) going through something like what you describe makes me nuts. I would have been livid by the treatment of the ER doc and what seems like a cavalier attitude by the pediatrician. I don’t know if I’m anxious or scared to find out what happened next.

Allergy Mom said...

Thank you all so much for your concern and kind words. I'm a little nervous about sharing the next section, since things did get worse before they got better, and it's sort of a list of mistakes I made during that period. I also don't want to scare anyone who is currently going through the bumpy diagnostic/learning about food allergies period!

I should also mention that our pediatrician is wonderful, and he has managed multiple conditions and gotten our entire family through the many medical challenges my son has faced. Some of this blog is lacking a lot of context, since I only write about the food allergies, but we have many other issues. Sometimes the allergies simply took a back seat, as long as my son was not in immediate danger and receiving good nutrition.

Nomilkmama said...

Well although it may be scary - I am so anxious to hear part two! I am desperate for better info. Our ped and allergist just say to avoid milk until age two and then try little amounts. I want to know what else my possbily come up. They also did the skin test on my son for eggs, wheat, peanuts and shell fish and they came back negative - but he hasn't yet had any of these - do we know if this can be accurate? The allergist said he got enough trace amounts of this through breast milk that it should be accurate. I'm doubtful. Thank you for being courages enough to share your story! I find comfort in knowing I'm not alone!

NoMilkMama said...

Well although it may be scary - I am so anxious to hear part two! I am desperate for better info. Our ped and allergist just say to avoid milk until age two and then try little amounts. I want to know what else my possbily come up. They also did the skin test on my son for eggs, wheat, peanuts and shell fish and they came back negative - but he hasn't yet had any of these - do we know if this can be accurate? The allergist said he got enough trace amounts of this through breast milk that it should be accurate. I'm doubtful. Thank you for being courages enough to share your story! I find comfort in knowing I'm not alone!