For the first 9 months of Hope’s life, she suffered with severe eczema on her face, scalp, ears, and limbs. It was so bad that it often became infected and inflamed and would ooze pus. Gross. She also always seemed congested and had trouble breathing at night.
We tried months of antibiotics and skin creams (including the steroid creams). We used special shampoos and special laundry detergent. Nothing worked, and she only got worse. It got to the point where the only soft spot on her face was the tip of her nose. That was the only spot on my sweet baby’s face that I could kiss.
Hope did not sleep very well at night because of her congestion and her insanely itchy face. “Eczema” is a Greek word that means “to boil over”, and that’s an accurate description. Hope would scratch her blistered skin, and it would instantly bleed. Several times during the night I would have to switch the sheets because of all the pus that oozed from her infected face.
I took her to three different doctors and, believe it or not, not a single one ever mentioned allergies. They just prescribed more antibiotics and skin creams and told me that maybe she would grow out of it in a couple years.
Finally, one day in desperation I took her to the local emergency room because she had a deep infection on the side of her face. The ER doctor referred us to a dermatologist at Children’s Hospital in Boston. Ah!, I thought. A place we know well. I was grateful and relieved.
We went to Children’s, armed with all of the research I had done online. I was convinced that Hope’s problems were allergy related. I had eliminated milk and eggs from my diet (I was nursing), but Hope was no better. Thankfully, the new doctor was willing to do allergy testing on her. He also prescribed another round of antibiotics (which I detested giving her), and yet another 3 skin creams to be applied many times a day.
When the results of Hope’s tests came back, I cried. She was severely allergic to nuts, egg, wheat, dairy, soy, and citrus foods. I felt like I had been poisoning her with my breastmilk. I was relieved to have an answer, but also worried and overwhelmed. What in the world am I going to feed this child? I instantly began weaning her, and we started on an expensive hypoallergenic formula.
There’s been debate surrounding the link between food allergies and autism. In my own family, there is no such debate. Hope’s allergies gave me the impetus to view some of her sister’s challenges as allergy-related… from the shiners under Rhema’s eyes to her chronic diarrhea.
But how I dreaded putting Rhema on a gluten-free, casein-free diet! At the time, the child LIVED on Taco Bell chicken quesadillas and pretzels. And fellow autism moms know when I say that’s all she ate, that’s all she ate.
However, within a week of putting Rhema on the diet, she began sleeping better at night and her diarrhea CEASED. Brandon and I were shocked out of our minds. After 2 years of chronic diarrhea and gastroenterology appointments, Rhema’s diarrhea stopped within days of removing gluten and casein. She also went from having colds and ear infections almost every month to going a whole year without either. And even though she is still on the restricted diet, she eats better today than she ever did before.
Certainly not every child with autism is affected by food allergies and gut issues. And the GFCF diet is not beneficial to all. But in our family it made all the difference in the world. (For more on allergies and autism, click here and here.)
Back to Hope. It took months for her skin to heal. But as soon as I started weaning, we could see improvements. The pictures in this post are actually after Hope started healing. She was far worse than these pictures show, but at the time I could not bear photographing her. Now, she is almost two years old and is still very allergic to most foods. In fact, more foods have been added to her list of allergies, but I am confident that she will outgrow some of these (and some she will probably never outgrow like the nuts). We’ve had a number of scares, and sometimes just walking into a public place or a friend’s home will trigger a visible allergic response in Hope. We never leave home without an EpiPen.
When I think back to that time when Hope was so sick from allergies, I know that God carried me. I was running on fumes – no sleep – consumed with both Rhema and Hope’s medical problems.
During that time, I could not imagine Hope’s skin ever healing. I had assumed that she would have permanent scars from the deep infections. (And the doctor warned that we might see scarring from all of his prescribed steroid applications). When I look at her now, it is a reminder to me that God can (and does) heal and can make anything new again.