Every Trip has a Beginning

Our trip in Allergy Land began when Sprout was just a few weeks old. His face was a constant red with some little raised bumps that would come and go. The first signs of real trouble came when I’d pick him up and he’d immediately bury his face in my shoulder and begin rubbing. The first few times, I thought maybe his nose was a bit stuffy, that I’d disturbed his sleep, or that he did not like the feel of my shirt. To compensate, I’d wear my softest shirt or put a clean pre-fold on my shoulder. Nothing I did worked. And, as we learned later, his nose was not stuffy.

 

So we talked with the pediatrician. At first, she told us all babies have that rash. According to her, it is the same stuff as cradle cap. It just shows up everywhere on some kids. She gave a few suggestions to clear the cradle cap. But none of her suggestions worked. Then she suggested that it might be some form of yeast. So to combat it, we mixed a probiotic with breast milk and fed it to him.

That did not work either. The rash and companion itch remained and continued. Then we progressed to hydrocortisone, which gave some relief but only for a short, short period.

 

As he aged, the rash increased in intensity and coverage. Worse, he barely slept. At an age where most other parents talk about their children sleeping through the night, Sprout would get 45 minutes if we were lucky. Usually, he’d be up every 20 minutes. Just as bad, he didn’t make up for it during the day.

But before we go much further, and the photos more graphic, please understand that Sprout is a healthy toddler without any apparent remnants of rash or other problems beyond his dietary restrictions. This post is meant to inform, not scare you. Here he is at 3 years old — healthy looking and without any rash — showing you the Hawaiian Shaka for hang loose.

Hang Loose!

It wasn’t just his face. We had to put leggings on Sprout. Otherwise he would sit down and rub his legs raw against anything: carpet; carseat; or even the inside of his pant leg; all were fair game. We also had to cut and file his nails nightly. Sometimes, we trimmed nails twice a day.

After about six months, Sprout ended up seeing a pediatric dermatologist who put him on a more powerful steroid cream. This was the result.

“NO THANK YOU!” 

Lesson one learned: Do not trust doctors. Be skeptical and triple-check to verify what the doctors says before applying medicines or otherwise proceeding. Ask even more questions than normal. Even though they mean well, doctors often do not know what they are doing and just as often guess along while using a diagnosis chart and a companion treatment chart.

 

Tangent: As we’ve also learned, allergies are poorly understood by the medical community and few doctors are properly versed in allergies, their treatments, and recent research.  My wife once had a pediatric allergist in Southern California say that she was better informed than he was and asked why was she there asking him questions to which she knew the answer. Note that she is not a doctor.

 

Food Allergies Ahoy

Sprout only ate breast milk during the first year. After a while we noticed that the itching and the rash would both get worse soon after eating. When Sprout was about six months old, we tried limiting my wife’s diet but our tests were inconclusive, possibly because of the multiple allergies involved. We didn’t properly put two and two together until Sprout was about one year old. By that time, we’d switched pediatricians and expressed serious displeasure about the dermatologist to whom he had referred Sprout. At that point, the pediatrician told us to see a pediatric allergist who had gone through pediatrics residency with him.

* Egg & Dairy

The allergist was abrasive and had what I consider poor bed-side manner but she gave thorough and honest answers to our many questions. We were still skeptical but allowed her to do a skin prick test to give us some guidance as to what Sprout may be allergic to.

In a skin prick test a set of short needles are inserted just below the skin’s surface and quickly removed. Before they are applied to skin, the needles are each dipped in a particular protein representative of particular allergens. For example, allergists use protein from cod as representative of all fish. Similarly, protein from walnuts represent all tree nuts. In addition, for comparison’s sake, one needle contains nothing and a second contains histamine, which is what allergic reactions produce.

Sprout did not flinch when the needles were inserted but he did feel a bit of discomfort as we waited the ten to twenty minutes necessary to see if a reaction occurred. Luckily, Sprout was distracted by the Muppets in Space video that was playing on a television in the room where we waited out the test.

Skin prick test results are relative. During that first test, Sprout reacted to everything but the placebo, cod, and shrimp. Everything else showed a reaction. The key, according to the doctor, was to understand that the test will provide false positives, especially when someone has been continually reacting for so long. A good rule of thumb is that the welt likely is the result of an allergy if it is larger than the welt from histamine. Most welts from the pricks were about the same size but two stood out; egg and dairy were both off the charts.  As a result, we were told Sprout likely had allergies to egg and dairy, and that we need to be cognizant that there might be other allergies to a variety of things including soy and dust mite dander.

After our visit to the allergist, we removed all the foods that showed a reaction through the skin prick test. Since then, we have taken an exclusive approach to Sprout’s diet. Every single food ingredient needs to be tested through a food challenge before we allow it into his permanent diet. Unfortunately, we’ve learned the hard way that reactions manifest themselves in many ways — this includes itchiness, ill feeling, coughing, vomiting, feeling the need to vomit, and hives — just to name a few. Over the past three years, we have introduced many but not all items from that first test back into his diet. We also took precautions against dust mites by purchasing dust might covers for our mattress, blankets, and pillows, discarding our box springs, and moving the bed onto the floor.

With the benefit of hindsight, we better understand the causes of some of his reactions. For example, the photo to the right shows a reaction to egg noodles (egg and wheat). This photo was taken about four days after Sprout ate the egg noodles and about a week before the skin prick test. We also know that reactions start within minutes of ingesting a particular allergen, peak at about day two or three, and subside after ten days depending on the amount ingested.

Once we took out egg and dairy, Sprout’s face was night and day. His rash subsided considerably and he seemed happier. He also slept somewhat better — 45 minutes instead of 20 minutes at a time.

* Continued Reactions

Before the skin prick test and discovering the egg and dairy allergies, there seemed only bad days. But after removing dairy and egg, there were good days . . .

. . . and then there were bad days. But truth be told, other than the psychological scarring we acquired watching blood flow from our baby’s raw skin, the bad days were still better than the best days that occurred before we took out egg and dairy.

 

Sprout also suffered from asthma during this time period. On a cool March evening in 2010 he had some serious breathing problems that led me to call the KP advice nurse hotline. After running through a checklist the nurse told me to hang up and call 911. So I did. An ambulance drove our very curious two year old to the hospital. It turns out, he had an asthmatic attack. It was serious and required an urgent care visit but wasn’t as serious as the nurse’s checklist made it seem. He was given a dose of medicine, hooked up to a mask style inhaler for a few minutes, and we sat around for several hours, perhaps for doctors to observe Sprout. Tangent: The ambulance trip itself cost close to $1400 for the two mile trip. The emergency room another absurdly large amount. KP picked up all the costs except our $50 co-pay. Wow, I was glad we had insurance for that one.

* Gluten

After about eighteen months and many food challenges, we determined that Sprout was also allergic to wheat. Another allergy test provided by Sprout’s allergist backed up our guess. Moreover, the test came back showing an actual allergic reaction to gluten, which is the protein found in barley, rye, and wheat. Due to the way crops are grown, oats are most often contaminated with gluten so oats are out, too. We use the easy-to-remember acronym BROW (barley-rye-oats-wheat) to remember what grains contain gluten and to describe the allergy because most people seem unfamiliar with gluten. Once we took BROW out of his diet, it took about two two three months before Sprout began to regularly sleep, the rashes went away, and he started to be a normal child. In addition, he hasn’t had an asthmatic attack since (*knock on wood*).

* Sesame

We regularly test new foods. Usually, we only test ingredients that have low risk of allergies (e.g. pineapple) or that contain ingredients Sprout has already cleared but are processed by another company.  Last April, despite knowing that sesame is the fastest growing allergy in the U.S., we tested out sesame seeds. After 5 minutes, Sprout started coughing strangely. After 10 minutes, he complained that he wanted to throw up. Five minutes later, hives started to cover his face. By the time we got him into the car for a trip to the doctor’s office, Sprout’s body was entirely covered by hives. And as I pulled out of the drive we could hear him gasping. Out came the Epi Pen Jr. I quickly read the instructions, jabbed it into his leg, and sped off to urgent care where he was fed a dose of steroids to bring down the reaction. Up to that point, Sprout’s reactions were limited to rashes and intermittent asthma attacks. Now we deal with the threat of anaphylaxis as well. In hindsight, we think sesame had caused most of the past asthma attacks based on the food we’d eaten the day of those attacks. We also learned a valuable lesson: only perform challenges for foods ranked high on lists of anaphylactic foods with a medical doctor (i.e. allergist) present. Conversely, home-based food challenges should be limited to foods that are not common causes of anaphylactic reactions in other people. For example, peanuts will have a doctor present; however, we were at home when we introduced mango and jackfruit.

 

Bottom Line: 

That little rash was an early warning sign that Sprout had charted a course through the dark and sometimes dangerous  waters of food allergies.

Through our travails in allergy-land, my wife has become a hero to us all. She did 99% of the work. She made and still makes all of Sprout’s food, researches foods before we introduce them, and frequently tests recipes. She also lived his diet until she stopped nursing Sprout just before his third birthday. And now she is sharing what she’s learned so other parents or adults who have similar food allergies have a reference so they aren’t relegated to drinking Benadryl with every meal or a bland diet of white rice and boiled chicken — not that those aren’t tasty but it would be quite boring to eat that same dish day after day.

Bon appetit!