OUR FOOD ALLERGY STORY | PART TWO
Read OUR FOOD ALLERGY STORY | PART ONEPart Two:
After our third son was born in November of 2010, we started to notice a head to toe rash that was all too familiar, developing when he was 2 months old. For the 8 weeks prior his skin was flawless (photograph above) and he was sleeping well at night.
I knew in the back of my mind that food allergies could be the cause, obviously, but I was hoping it wasn’t. My allergist in Chicago suggested to wait a few more months before the RAST test because it is not nearly as accurate at such a young age. Instead, she mentioned eliminating again one or two foods. His rash was different because it would definitely come and go. It was really severe some weeks, and would mellow out for a week. It was somewhat inconsistent, unlike my middle son’s symptoms.
I wondered if perhaps it was an environmental allergy to something he was in contact with. So I decided to change to a more mild detergent first. The entire process to eliminate an allergen, environmental or food, is so time consuming and there are so many variables that it literally can drive one crazy. I was on that path as I tried a different detergent one week, then a different soap, even a filter on our bath water. I made myself so stressed out. I honestly wanted to selfishly relax with my baby. I knew that I most likely wouldn’t have a 4th baby, and so I just wanted to not worry about these things. I wanted to enjoy the days of just he and I, while the older boys were in school. These were incredibly long weeks of a progressively worsening rash and a more and more uncomfortable baby. Nothing was making a definitive difference in his patterns of rashes and welts. And because it was a different pattern than my older son’s symptoms, I focused on contact allergens as the culprit. I called my friend Diana who I became good friends with after connecting when my middle son was sick. She helped me again by suggesting things to try. She was also incredibly empathetic and visited me in Chicago, all the way from Nashville.
I also noticed that upon a visit to my mom’s house in Ohio, that his skin condition became noticeably better. How confusing. Between my mom and my friend Diana, we thought maybe it was her water filter. So, of course this led to me going back to Chicago and installing a water filter on the bath tub. When that didn’t improve things, we bought filtered water at the store for bathing! I mean, can you tell how desperate again I was to heal him? And how much I was thinking it could be environmental? It became consuming and exhausting. It was hard to wait it out the full two weeks each time I tried something. I felt that I needed to just eliminate everything and anything. I was also continuing to eliminate foods one by one slowly. But if you do this, again you create too many variables for the experiment. (I suppose my husband and I were putting our science degrees to good use.)
At around four months old, his skin reflected a more severe situation, as you can see in the photographs. It covered his body. He was also starting to wake up screaming in the middle of the night and throughout the day in pain. My allergist called me one evening after an appointment earlier in the week, at 10:30 pm to check on me. She knew I was stressed out and she was worried about us. She knew that I wanted to try and go through all the possible environmental allergens while waiting it out for the RAST blood tests, and she knew the process was wearing on me emotionally and physically. She knew I wasn’t sleeping, he wasn’t sleeping, I was barely eating and was in tears in her office. This is when she suggested we go ahead and do the RAST blood test just to see if anything was positive at this young age. In addition, she ordered a CBC and she suggested several treatments for his skin to get it under control. Some of the suggested treatments blew my mind: pharmaceutical grade peanut oil (!?) and bleach baths (?!)- and of course steroid creams and ointments. Again, my instincts were to try any natural treatments first, then move to low-medium % cortisone creams as needed.
When the results came back, the RAST didn’t show ANY food allergies present. However, the blood work showed that an allergic reaction was indeed happening and altering his eosinophils to a dangerously high level. Eosinophils are white blood cells that are part of the immune defense system. They are key components in inflammation from allergies and asthma. She said that her instinct with these results still pointed to severe food allergies. I remember her saying “You have done this before, you can do it again. You know what you need to do”, which was the elimination diet. She was a strong advocate for continuing to breastfeed, and suggested I do not slowly eliminate food after food. I was instructed to do a hardcore elimination diet, starting that day. She wanted me to do this for four weeks, and then we needed to recheck his blood work.
I went home and cried. Again? Really? I paid my elimination diet dues, right? It felt isolating to have this new baby in the blustery, cold months of winter in Chicago, with no family around, and a husband who was commuting over an hour one way to work in a stressful job. I also had two boys in two different schools that I shuttled to school and back home twice a day. I felt exhausted just thinking about it. But I pulled myself together and realized that it was true, I have done this before. I am thankful that this, all of this is manageable. So I went on the turkey, rice, pear, grapes, potato, broccoli diet. I used the most basic soap, lotion and detergent on him. I was even cloth diapering and he wore organic clothes. He wore hand mitts religiously and was swaddled tightly for naps and at bedtime to try and help him not scratch. I even sewed a few onesies shut at the hands (as my friend Diana did for her oldest daughter) so that his skin would not become infected from scratching and kept cotton hats on him to protect his raw skin. He was still screaming and uncomfortable at night, itching from the inside out.
Nothing changed in his skin for those long, four weeks. But the blood work showed an astonishing result: the eosinophil levels were completely reversed and now normal after a month of the elimination diet. My allergist said that was enough evidence to her that this was a similar case to my middle son. We would recheck the blood work for food allergies at 9 or 10 months of age. In the meantime, stick to the diet and heal his skin and gut.
Deja vu. This was definitely a milder case than my older son, if you can imagine, but equally upsetting.
And his skin did respond to my strict diet. And after 2 months on the diet, he was healed with the exception of a spot near his eye. This was a considerably quicker healing time than my older son, who it took 9 months to heal, versus 2 months.
My baby would occasionally flare up a little, because I have to admit I became a little lax on the diet when he was 6 months old. By lax, I mean I ate a tomato once in awhile, had coffee with coconut creamer and ate Indian food that I prepared at home. The biggest allergens I did not eat ever this time around (same as before) were: soy, corn, wheat, eggs, milk, dairy, nuts and sesame. By the time he was 9 months old, we did a repeat RAST blood test. My allergist called me herself (as she often did, even after hours at home) and told me the results. I was standing in Whole Foods and remember writing it down: “severely allergic to eggs, and positive for soy, corn, wheat, milk and nuts” and she paused and said “the egg level is extremely high, one of the highest we have ever seen” and I started to cry. For some reason I thought maybe she would call and say that the results were simple with one food, and I definitely did not want to hear highest level to anything. My sister’s anaphylactic shock reaction at a year old was to egg and my mom rushed her to the hospital herself, no epi-pen in hand, as I watched at only 4 years old.
My allergist comforted me and said it will be manageable and we will retest him again in another 6 months. She said the results were not as varied as my middle son’s and more importantly the baby was already healed by my diet. More recently, we found ourselves gearing up for a move. My husband had taken a job back in Ohio. The one sad thing was leaving my allergist. Everything else was a full circle moment that had us back to a community we knew, close to my family and it felt like coming home.
We have now been doing this for 7 years. Some days it feels normal, and other days it definitely does not feel routine. I hate that a food could end a life, a life that means more to me than my own. It is so hard to wrap my brain around that, still. There isn’t a day that goes by that I don’t think about the seriousness of what it means to have food allergies and for two of my small children and their safety. Introducing new foods to a baby is a complete nightmare that almost causes me to have a nervous breakdown. I remember that time with my oldest being so much fun. I would watch him smile with new carrots all over his mouth, snapping photos to document. Now, with the younger two, we watched and stared at their every breath, checking their skin, supervising them until 30, then 45 minutes passed. We watched for a reaction, signs of trouble breathing or their throat swelling shut. To now let my child go to school, or be away from me without my protective, watchful eyes is a real leap of faith and often brings me stress, even after a few years.
Mealtime has taken on a completely new meaning around here, and just until recently has been quite a feat. We have finally adjusted to cooking several different recipes for each meal. We are trying to have fun in the kitchen again! I have always loved to cook and bake, and we love to share meals together. I have to say that no matter what, we are blessed with overall healthy children. We are blessed to have had great care. We are blessed that I could heal their pain and symptoms through my diet, without a lot of medicine. We are blessed to have many supportive family members and friends when it comes to mealtime or holidays. We thank God every day for these blessings.
Do you ever stop and look at the path of your life and realize that despite the difficulties or obstacles, that you are supposed to be where you are, doing what you are doing in that moment? This is where we are as a family.
If you made it through this long story, thank you for reading it. If you know someone who could benefit from this story or food allergy support, please share it with them or re-post it.