A Little Bit Can Hurt (5 page)

Three-and-a-half-year-old Reyna "is a wonderful bundle of energy," says her mother Anna. Reyna loves art, music and playing outside, but most of all, she loves her little sister Talia. Talia has a joyful temperament and shares her big sister's love of music. At seven months old, Talia has learned to sit up and grab "everything she can get her hands on," according to Anna. Reyna is Talia's favorite playmate.

S
adly, Reyna and Talia will never know their Uncle Trent who died suddenly at the age of 31 shortly before Reyna's birth. While attending a holiday party, he suffered fatal anaphylaxis after inadvertently eating nuts to which he was severely allergic. He had chosen a dish he believed did not contain nuts, but he didn't know the serving spoon had earlier been placed in a nearby dish that did contain nuts. Trent was not carrying his epinephrine auto-injector on him that night. His throat began to close, and he ran to his car to retrieve his lifesaving medication. His body was later discovered slumped over the steering wheel with his epinephrine auto-injector in hand. He hadn't told anyone at the party he was
suffering an allergic reaction, and tragically, he hadn't had sufficient time to administer his own epinephrine.

At the time of his death, Trent was an Ivy League-educated attorney dedicated to improving employee benefits, increasing diversity and helping the homeless. The law firm that employed him founded a scholarship in honor of his memory.

Two weeks after Trent's death, Reyna was born on New Year's Day. As the first baby of the New Year born in her home county, Reyna was a "little superstar coming out," recounts her mother. Reyna's name has two meanings. In Spanish, it means "queen," which her father Corbin says suits Reyna well. In Hebrew, her name means "Song of the Lord." In light of Trent's tragic death, Reyna's parents think her name is particularly fitting. Her mother Anna believes Reyna "was meant to be a new beginning for our family because of everything [we] had been through. She's just a very special little girl."

In the hospital after her birth, Reyna was having difficulty latching onto her mother's breast, and she also became jaundiced. The nursing staff fed her a dairy-based formula to address both of these problems. Reyna subsequently developed eczema. At this time, she was "just a few days old," according to her mother.

In addition, Reyna was born with a serious heart murmur that would require surgical intervention when she reached six months. It was of paramount importance that she gain weight and strength before her heart surgery. However, at one month of age, Reyna developed severe acid reflux. Her acid reflux was of particular concern because she was not able to retain much food.

Following the development of her reflux, Reyna's pediatrician immediately referred her to an allergist. She was diagnosed with a "raging" milk allergy, according to Anna, and was switched from regular formula to a hypoallergenic option. The latter was an extensively hydrolyzed cow's milk-based formula that still contained a small fraction of milk protein to which Reyna unfortunately reacted. Because she could not tolerate this formula, she was switched to a soy formula.

Anna, who was breastfeeding Reyna in addition to feeding her soy formula, stopped consuming dairy products herself to prevent her daughter from being exposed to dairy allergens via her breast milk. Reyna's eczema persisted despite the changes to her diet and to Anna's diet. ".. Within a month [of her milk allergy
diagnosis], she was really scratching and continued to scratch, even after I took the milk out of my diet, so we knew that there was something else," explains Anna. In addition, Reyna's reflux worsened.

Because of her persistent eczema and reflux, Reyna was tested for allergies again at three months and found to be allergic to egg and peanut. In addition to dairy, Anna removed egg and peanut from her own diet so she could continue breastfeeding Reyna. Before her heart surgery at six months, Reyna was tested for allergies yet again and proved positive for soy allergy. Anna removed soy from her own increasingly limited diet, and Reyna was placed on Neocate
^®
, an amino acid-based formula containing no intact protein.

At eight months, Reyna was eating peas when her lips began to swell. She began to cough and choke as well. Because the reaction occurred after office hours, her parents consulted the nurse help line associated with Reyna's pediatrician. They were instructed to give Reyna Benadryl
^®
and watch her carefully. The Benadryl
^®
seemed to help, so they didn't administer her epinephrine auto-injector.

The following day, Anna and Corbin reported Reyna's reaction to her allergist. He said Reyna had in fact suffered a life-threatening, anaphylactic reaction and they were fortunate the Benadryl
^®
had eased her symptoms. Instead, Reyna should have immediately been given her epinephrine with the Benadryl
^®
and taken to the emergency room by ambulance.

After this frightening incident, Anna requested a full battery of allergy testing for her young daughter "because we could not go on feeding her and waiting to see if she [had an allergic reaction.]" Reyna's testing results indicated sensitivity to at least 15 different foods. "The list was ridiculous," recounts Anna, and included milk, eggs, peanuts, tree nuts, fish, shellfish, soy, wheat, legumes, garlic, most fruits, all grains except rice and all meats except chicken. Anna, who was still breastfeeding her daughter, recalls, "I had taken so much out of my diet that I knew there was no way I could survive trying to take it all out and still nurse, so I had to give...up [breastfeeding]."

Anna confides that she was angry about her daughter's milk allergy and became angrier with each additional food allergy diagnosed. Looking ahead to Reyna's life with multiple food allergies, Anna explains she felt terribly saddened. "I was...sad and upset because of all of the allergies that she had...Why Reyna? She already had this heart [condition]...Why give her something else?"

Reyna was reaction free until the following May at age 17 months when her parents were entertaining in their home. They placed food on the table in a way that was accessible to everyone including the children. Anna recalls, "We're not exactly sure how her reaction started, but all I remember was looking over at her...She had her hands in her mouth, and she was rubbing her eye...I looked at her, and her eye was swollen shut. I mean, her whole face was ballooning in front of me within seconds. It was just unbelievable..."

Terrified for her daughter, Anna forgot to administer Reyna's epinephrine auto-injector and call 911. Instead, she drove Reyna to the emergency room where she was immediately given epinephrine and observed for several hours. Reyna was given additional epinephrine when she suffered a second, delayed reaction in a dangerous development referred to as a biphasic reaction.

At the hospital, Anna was anxious about the stress the epinephrine might place on Reyna's heart. She was placed on a heart monitor and fortunately suffered no ill effects. "I'm just so thankful that God had his hand upon her," her mother confides. Unfortunately, Reyna's parents were never able to determine what food caused Reyna's reaction that day.

As Reyna approached preschool age, Anna and Corbin encountered new challenges and frustrations. Many of the preschools they researched for their daughter were "peanut free," but Reyna's parents were equally concerned about milk in the school environment. Reyna's dairy allergy might cause her to suffer a reaction if milk merely comes into contact with her skin. Her parents learned that many preschool directors were not willing to serve a milk substitute such as juice or rice milk even to only one class.

In fact, Anna and Corbin encountered a teacher at one preschool who complained that, based on a prior experience, teaching food-allergic children was burdensome and limiting to her as a teacher and thus posed a hardship to her. She refused to teach food-allergic children again and conveyed an attitude that expressed she had already done her time. Furthermore, she was resentful that her colleagues had yet to take a turn.

Anna and Corbin were anxious but not deterred in their efforts to find a safe preschool for their daughter. They did not expect to find a school that would be able to address each of Reyna's numerous food allergies, "but it was important to find one that would be willing to work with her," says Anna.

A parent-run cooperative proved to be that school for Reyna. The co-op school was willing to consider safe alternatives to milk including water, juice and rice milk. In addition, the school instituted the practice of having children clean their hands with wipes at the start of the school day to remove any dairy proteins from their hands. This routine minimized the contact risk to Reyna. The children's hands were again cleaned after snack time, and the tables were wiped down before and after snack.

The preschool president asked Anna to serve on the board, and at a board meeting, she suggested snacks that would be safe for Reyna. Anna requested a "Reyna Friendly Day," so Reyna could enjoy the same snack as her preschool classmates one day a week. Much to Anna's surprise, one of the parents suggested every day be a "Reyna Friendly Day," and all board members agreed. Anna recalls being in tears at this heartfelt gesture to keep Reyna safe and happy and says, "These people I didn't know just touched my heart so much."

Anna was fearful about having another child in light of Reyna's extensive food allergies. When she became pregnant with her second child, Talia, Anna recalls she was constantly worried, "Is what I'm eating going to affect Talia?" Anna tried to calm her fears that Talia would also develop numerous food allergies by asking herself, "Who can have as many allergies as Reyna?" Cautious about exposing her daughter to highly allergenic foods in utero, Anna avoided nuts, seeds and all dairy, especially during her third trimester. In addition, Reyna's allergist recommended Anna take acidophilus, a probiotic. To help her manage the anxieties of her second pregnancy, Anna credits talking with other mothers, keeping a journal and praying.

Reyna's "little" sister Talia was born weighing nine pounds, one ounce. Anna says of her daughter's appearance at birth, "...She had pristine skin, absolutely gorgeous, first day she was born. [But] the second day, her skin was like the Sahara. It was so dry and cracked and white...I had never seen anything like this before. It was just truly unreal. It just kept getting worse...so I knew something was going on."

At three days old, Talia developed explosive bowel movements accompanied by severe diaper rash. Anna, who was breastfeeding her baby, began to remove foods from her own diet because she was concerned that Talia had food allergies and was being inadvertently exposed to the allergens through Anna's breast milk.
Eventually Anna's diet was pared down to chicken, rice and spinach. However Talia's eczema and problematic bowel movements persisted, so her parents took her to Reyna's allergist.

At two months of age, Talia was diagnosed by skin prick tests with a severe milk allergy. The allergist advised Anna and Corbin to feed Talia Neocate
^®
as well. Within two days, Talia's stool became firmer and her diaper rash cleared. Shortly thereafter, Anna resumed breastfeeding, but Talia's symptoms returned. Anna explains how she struggled emotionally with the decision to stop breastfeeding Talia. "Unlike the many difficulties I had nursing Reyna, Talia latched on wonderfully from the beginning and was an avid nurser. It was beautiful and my heart broke to have to stop." Determined to do what was best for her daughter, however, Anna discontinued breastfeeding entirely and fed Talia Neocate
^®
only.

Within two months, Talia's skin was as soft and clear as it had been at her birth, and her eczema flare-ups were infrequent. At seven months old, Talia is a happy girl with a wonderful temperament. She is very animated, particularly when playing with her big sister Reyna.

Reyna, now three-and-a-half years old, eats a diet limited predominantly to chicken, rice, olive oil and Neocate
^®
. She still drinks Neocate
^®
to ensure she receives adequate calories and nutrition, and her parents use olive oil to add extra calories to her diet. Despite her extensive food allergies and dietary limitations, Reyna has healed beautifully since her heart surgery. "She is truly a blessing, because of the energy she has," says Anna.

Struggling with grief over his brother's death and concern about his own daughters' severe food allergies, Corbin admits that he worries that history will repeat itself. He orients his grief and anxiety in the context of his faith, declaring "God has His own plan, and I just have to have the firm belief that whatever is destined will be."

Anna and Corbin are advocates for their children and act purposefully to ensure a safe environment for their food-allergic daughters. In addition, they seek to instill in them faith, strength and, like their Uncle Trent, a willingness to help others. They pray their daughters will live long and healthy lives, teaching them to also pray and encouraging them, "There's a [reason] that God has allowed this to happen...They can go off with a sense of confidence [that] 'God thinks I can handle this, and He must think a lot of me.'"

Managing and coping with severe food allergy dictates a lifestyle that is not free, according to Anna. "It's truly just a faith walk," she concludes.

POSSIBLE NEXT STEPS:

1. Have you done your research well in advance of school registration deadlines and/or the start of the school year to look for programs that fit your child's needs?
   
2. Have you reviewed and
   practiced
   your child's food allergy action plan so you will be able to enact it during a stressful emergency?
   
3. Is your child's EpiPen
   ^®
   accessible at all times? Do you know how to administer it? Go to
   www.epipen.com
   for detailed instructions. As an alternative, have you considered the new Auvi-Q™, a voice-guided epinephrine auto injector that talks you through the injection process during a severe allergic reaction? Visit
   www.Auvi-Q.com
   for more information.
   
4. If your child's diet is limited by extensive food allergies, have you consulted a dietician to ensure it continues to meet her nutritional needs?
   
5. Are you aware of your child's family history regarding allergic diseases such as food allergy, hay fever, eczema and asthma? Discuss this history with your child's physician.