Gina Clowes of AllergyMoms.com: My Storyby Gina Clowes Patient Advocate
When my husband and I decided to have kids, I knew I would go back to work. I was one of those women who sneered at stay-home moms because "Motherhood is a relationship, not a career"
I did end up going back after my first son was born, albeit part-time. I had a terrific job, an adorable son, excellent childcare (Grandma) and a meticulously clean house. After a few years, my husband and I felt another child would complete our family. Since moms are often more relaxed and experience the second time around, I looked forward to an easy time where I'd do an even better job as a parent now that I knew the ropes. I'm sure that somebody up there somewhere got a chuckle out of our assumption that we could improve on the perfection of the first.
After my second son was born, the option of returning to work immediately evaporated, and so did the option of sleeping more than three consecutive hours. My newborn son - who was supposed to be the "easy" one -- was covered with head-to-toe hives on his second day of life and those hives stayed with him for years. The pediatrician joked that he had a "face that only a mother could love." When we brought him home from the hospital, he also had terrible acid reflux and we could not lay him down for fear that he would choke on his vomit. It was frightening, and there was no parenting book or motherly advice that was going to make it go away. We changed his diaper for 2 ½ years with his head propped up on pillows.
His first year of life was a whirlwind of acid reflux, eczema, hives, ear infections and lack of sleep. The pediatrician said he'd grow out of the acid reflux. She told me to count how many times he spit up in a day. I stopped counting after eight times in 30 minutes. For his first 15 months, I slept sitting against the headboard of my bed with my son lying face down on my chest.
Confirming a Food Allergy Diagnosis
Every chance I got, I'd jump online to earn a few more credits toward my Google MD. I learned words like atopic dermatitis and urticaria and immunoglobulin E (IgE). After discussing this with my real doctor, she suggested I avoid dairy, then soy, then egg, then wheat, but still things were not better. Of course I was eating peanut butter rice cakes and munching on pistachios for protein. We did allergy skin testing and it was negative. (I later learned that infant skin sometimes does not contain enough mast cells to show a reaction.)
After numerous doctor appointments and conflicting diagnoses, we packed up our family and drove nine hours to New York City to the Jaffe Food Allergy Clinic at Mount Sinai School of Medicine. There, we were able to see one of the leading pediatric allergists in the country. I was hoping he would tell me I was just an anxious mom. But instead he confirmed that our son had over a dozen food allergies, some life threatening. He told us our son should never be without epinephrine.
That was the beginning.
The doctor explained that since I was breastfeeding, I had to avoid all the foods to which he was allergic, including milk, wheat, egg, peanuts, tree nuts, sesame, garlic, banana and more. It wasn't easy, but unlike any reducing diet I'd ever gone on (and gone right back off), this one was for my son. Cheating on the diet was not an option.
The good news is that I fit into my jeans from college. The bad news is that I was so cranky, tired and miserable that no one wanted to be around me.
It was very difficult to go to parties or bunko or even out to dinner. I avoided so many foods that I'd really long for what others were eating. I knew that I was only on the diet for a limited time (six months), while my son would be on this diet indefinitely. It was only the first glimpse at how challenging his life would become.
Support From Friends and Family
As we shared the news of my son's food allergies with friends and family, we naively assumed that they would rush to learn as much as possible and do whatever they could to accommodate him. Many pleasantly surprised us, but others never really learned enough to gain our confidence.
The pressure and stress that this invisible condition creates can affect everyone in the family. It is so important to get support from family and friends but also from other allergy moms and dads. There is a comradery there and an understanding that those outside the "allergy world" will never get. The exclusion and isolation that can occur is often just as difficult as managing the special foods and the potential for anaphylaxis.
Any mom can tell you that there is no greater pain in life than seeing your child hurt, physically or emotionally. Yet sometimes getting roughed up a little in life brings out the best in us and our kids too. We empathize with our son, but we teach him that food allergies won't stop him from being every thing he was meant to be.
So this story ends with me back at work, but this time I don't need to leave the house. I now facilitate a local support group and am active in food allergy advocacy. I have an online support group with thousands of members worldwide, and I have a children's book due out this summer. This is not the life I would have ever imagined, but it's a terrific one. We don't get to choose our cards in life. All we can do is the best job we can with the cards that we're dealt.
Gina Clowes is founder of AllergyMoms.com and our new guest blogger. She will write a new blog for each week in May, Asthma and Allergy Awareness Month. She will also write a blog every month for MyAllergyNetwork.com