Many people have asked me what it is like to raise a child with life-threatening food allergies.I have boxes full of files of information that may be helpful to other parents dealing with similar issues.Today, celebrating my son's 12 th birthday, I look back, and remember
SEAN GABRIEL MOORE: the beginning...
Late at night, every two weeks throughout my entire pregnancy, four helicopters flew in tight formation over our home, flying so close you could see the pilot's face when the moon was full.These helicopters were designed to bring death to a small type of Mediterranean fruit fly.The helicopters sprayed a mixture of corn syrup laced with a neurotoxin called Malathion over every home, business, school and park in a seven mile radius.Over everything.We were warned to stay indoors and keep our doors and windows closed during the procedure.We wanted to be extra diligent, so we hosed off our walkway and drive, and ran the sprinklers each morning, but everywhere we went in our town, the ground was covered with tiny droplets of the sticky substance.We removed our shoes before coming indoors, and kept our three year old off the grass.We covered her sandbox and put all the toys in the garage.We did everything we could think of, except move away.
Four days after a spraying, and two weeks before my due date, our son Sean came into the world a bright red.Red all over.So red, we nicknamed him Pepper.So red, my mother questioned if my pale-skinned husband was really the father.Sean seemed to be a healthy baby who nursed well, but he had unsettling bouts with colic each and every evening.These screaming tirades left his father and I weak and shaken.We began to dread the onset of evening, but Sean would finally, inevitably fall asleep, sometimes mid-scream, by midnight.
At 28 days old, he developed a fever of 102 degrees, and our pediatrician informed us that children under one month of age, with fevers over 101 degrees should be hospitalized, and given a spinal tap to rule out meningitis.We were floored.Sean, although hot to the touch, was eating well, very responsive, and in good spirits.We decided to let the doctor perform a spinal tap there in the office, but after three unsuccessful attempts that took over an hour, with Sean screaming in agony, we felt like taking the baby and running away.
Three out of the four pediatricians in the practice hovered over our baby.My husband got into a shouting match with one of the doctors.Everyone's nerves were frayed.They decided to get a special needle from the local hospital that would fit into his tiny spinal column.We waited.The needle arrived and they proceeded to roll Sean up in a ball and make another jab into his tiny back.He screamed a cry of pain so primal that the hairs stood up on the back of my neck and arms.This was my baby.I feared he would be paralyzed for life.This time they were able to obtain the clear fluid, but they still insisted on hospitalizing him until his fever went down.
At the hospital we were shown to a room in the Intensive Care Unit that had an institutional crib and one hard backed chair.I informed the staff that I was a nursing mother, and that I would be staying with my newborn son.They brought in a regular hospital bed, and I slept holding Sean's tiny body, enveloped in wires hooked up to various monitors.We stayed in that room for two days and nights.His fever broke.We went home.They called it a "virus of unknown origin."
As Sean's redness faded, a new, more unsettling change was happening to his skin.By three months of age, he developed red scaly patches on both cheeks, and a thick crust on his scalp, which oozed in places.He was born with a full head of hair, but I wished for a bald baby to better maintain his scalp.We washed him in baby bath soap, then switched to a hypoallergenic formula from France, then used only plain tap water, but even water turned his skin a dark red, and as he was lowered into the liquid, he would howl as if he were being boiled in oil.He was eating well and gaining weight, but he would spit up with the least amount of tipping or jiggling.We would hold him like a delicate box of eggs, but inevitably one of use would be "urped" upon within a half hour after a feeding.The house began to smell of sour milk.And the bouts of colic continued.
At four months, Sean had a rash from the top of his head to the tips of his toes.He was diagnosed as having 5th Disease (Aerothemium Infectorium, or "slapped cheeks" disease), and was given Septra antibiotic for a week.He had been sleeping through the night for about a month, but now is up at least two times each evening.The antibiotics seemed to help the rash some, but it never went away completely.Sean still spit up regularly after each meal.
On his fifth month birthday we introduced rice cereal to his diet, by mixing it with a soy based formula.His rash worsened, as did his scalp.There was no clear skin anywhere on his body, and some parts of his body were the texture and color of a raspberry.We threw away the formula and mixed the rice with breast milk, but the rash stayed.Sean began to wheeze regularly, particularly after meals.The spitting up continued, and now had a name."GE reflux", apparently more common in boys.No one seems too worried as Sean continues to gain weight.We decided Sean did not have 5th's Disease, but a variation of his skin allergy.We noted his rash worsened immediately following his immunizations.
At six months we started introducing fruits and vegetables (level 1, jarred) into his diet, but it would have been hard to determine if he were allergic to any of them because his skin condition was so bad.Our pediatrician prescribed Westcort hydrocortisone cream, but Sean would cry when we applied it, so our doctor referred us to a dermatologist, who suggested a 2% hydrocortisone ointment.She recommended we wash all of our clothes, Sean's clothes, and all bedding in a perfume and dye-free detergent, and then double rinse the clothes in fresh water, and use no softener.We were warned that both Ivory and Dreftcontain perfume which can cause a skin reaction.She also suggested washing Sean in Cetaphil, or using the Cetaphil by itself, without water, to cleanse his skin.Over the counter creams were suggested: Eucerin and Moisturelle.Eucerine contains lanolin, to which I and my mother are allergic, so we avoided it.
I was told the baby was probably allergic to my breast milk, or at least to the foods I was eating, so I went on the "elimination diet" which consists of mostly lamb and rice.The baby's skin condition worsened.I placed Sean on Alimentum formula, which is a hydrolysate, or "pre-digested" formula for allergic babies.Very pricey.I was still nursing twice a day, limiting his diet to the Alimentum formula, rice and barley cereals and some fruits and vegetables processed by a health food company.He developed oozing sores all over his body, particularly on his face and hands.
At seven months, out of desperation and frustration, I weaned Sean completely.I enjoyed breastfeeding our daughter her first year, and because I wasn't working this time around, I had hoped to nurse him as long as he wanted to.We both cried as I tried in vain to give him a smelly bottle of formula.For three days he ate practically nothing, and I had an ample supply of milk that I couldn't give him.He developed an ear infection, and was placed on Zithromax for five days.His skin cleared to a point where there were patches of clear skin.No more oozing sores, his scalp looked like dandruff only.The wheezing lessened.The overall body rash remained.The doctor thought he might have a staph infection on his skin, which partially cleared with the use of the antibiotics.
We were referred to Children's Hospital in Los Angeles.The aging, partially deaf doctor there was condescending.He gave me a one page flyer, in English and in Spanish that gave the basic facts about eczema.He said Sean would probably have eczema for life, and to not punish him when he scratches.He was diagnosed as having "high complexity" allergy, meaning no one had a clue what was the matter with him.I asked him if the constant use of cortisone could cause problems of sterility, because I was using the ointment in the diaper area.He said no, but then casually added that it could stunt growth.I said, "Oh, so he will be a pygmy who can have progeny?"Putting on sunglasses, I cried from frustration all the way home.
At eight months of age, Sean got his first teeth.He now enjoyed Cheerios and crackers with his jars of fruits and veggies.He has a voracious appetite.He finally stops spitting and throwing up, but his skin is still red and itchy all over.A friend with eczema suggests we use Crisco instead of expensive creams.We switch, but it makes the baby so greasy we make our own mixture of one third Crisco, one third Moisturelle and one third Complex 15 creme.We put this over the hydrocortisone ointment.I use the Internet to source out new treatments for infant/childhood skin disorders.
At nine months Sean stands up.I do not believe in encouraging a child to walk early, but the carpet makes Sean itch and wheeze so I am glad when he is in a better layer of air two feet off the ground by standing.We purchased a HEPA air filter for his room, and remove all thick bedding and toys that could retain dust and dust mites.We hire a housekeeping company known for its thoroughness.We clean the heating ducts, and place filters on the heater and all duct pathways.
At ten months Sean has shown no improvement.His eyes are swollen and runny.His nose is swollen and runny.His arms and legs are covered with eczema.We have his blood drawn for Radioallergosorbent (RAST) testing.IgE-RAST detects anti-specific IgE, type 1 hypersensitivity.IgG RAST detects delayed sensitivity reactions.He is tested for dust mites, casein, dairy, codfish, peanuts, wheat, corn, soy, chicken, citrus, eggs and (because I insist upon it) rice.On a scale from one to six, six being the most severe allergy, Sean tests a five on all items except codfish and dust mites, for which he shows a level two.A friend recommends a pediatric allergist affiliated with UCLA's pediatric allergy and immunology department.
We alter Sean's diet, removing all breads and crackers and the other foods he tested positive for, but we decide we must go and see a specialist when five minutes after a breakfast of fresh bananas and fresh avocados Sean turns completely purple and his face and hands begin to swell up like someone is inflating him.White bumps appear, pushing up through his purple skin like a color reversal of mosquito bites.Sean begins clawing like mad at his arms and legs.I give him a teaspoon of Atarax, an anti-itch medicine, and, holding his arms and singing him songs to soothe him, he finally falls asleep.I lay him in his crib and watch him sleep, concerned about his breathing.
When he awakes, his skin is better and the swelling has gone down.I give him another teaspoon of Atarax before bed that night.We take him in and have his blood drawn again and do another RAST test, this time for specific foods: rye, barley, potatoes, strawberries, bananas, string beans,beef, lamb, chick peas, peas, avocados, gluten, kidney beans.He is allergic to them all, in varying degrees.Nothing below a level four.
Our PPO denies our visit to the specialist, but we go anyway.The doctor was the former head of Pediatric at UCLA.He examines Sean, and spends two hours talking with us about Sean's so far short but turbulent life.My reality of Sean's situation is that he will get better with professional help.The doctor tells us that in twenty years of treating children with allergies, he can count on one hand children who have had allergies as severe as Sean's.My center of reality shifts.
He teaches us how to give Epinephrine (adrenaline) injections to Sean in case of a severe allergic reaction.He warns us that our pre-school daughter may bring home a virus that could cause respiratory complications for Sean.He suggests we join the National Eczema Association.He also suggests we contact Dr. Hugh Sampson at Johns Hopkins University Hospital.Dr. Sampson is a leader in pediatric allergy, particularly how it relates to food.Dr. Sampson's nurse Lynn Tyble suggest we try a formula called Neocate, made in the U.K. that is amino acid based and contains no caesin.She also hooks us up with the Food Allergy Network, a non-profit organization designed to disseminate information on specific food allergies.Dr. Sampson sits on their advisory committee.
After only three days on a restricted diet of lamb, potatoes (both white and sweet), green beans, applesauce, pears, peaches, and apricots, Sean begins to look like a normal baby.His skin and scalp are clearing.His skin begins to soften.On the fourth day I make the mistake of feeding Sean a baby food that contains pears mixed with raspberries.Within one minute Sean changes from a white baby to a purple one.He begins to cry, and his nose runs.He wipes furiously at his face and his eyes begin to swell shut.I repeat the procedure with the Atarax, and curse myself for not yet filling the prescription for the Epinephrine.I watch Sean closely, and he gradually gets better throughout the day.
A week later our daughter Melissa is home sick with a bad cold.I do everything in my power to keep the children apart.A few days later my husband comes down with the virus.Then I catch it, and because of my close proximity to Sean, Sean finally catches it.He wakes up one morning with a slight wheeze, but by dinner he can be heard across the room.I decide to take him to the doctor.
In the few minutes it takes to drive from our house to the pediatric offices Sean begins gasping for air.I look in the rearview mirror to see him arching back in his car seat, hands flailing.I drive madly the rest of the way, leap out of the car and rush Sean up the stairs.
As I enter the room a nurse cries, "He's in respiratory distress!"Everyone begins rushing around us.Sean's clothes are quickly removed and we watch the skin under his rib cage suck under.It becomes evident how much he is struggling to breathe.Sean has a mask placed over his nose and mouth, and a cool mist envelops his face.He begins to panic and claw at the mask, crying loudly.It is all I can do to contain him on my lap, but the medication, the bronco-dilator Albuterol, opens his tiny airways and he calms down as he discovers it takes no effort now to breathe.I was told he must use the respirator every two hours all night long, and I was instructed how to use the device and administer the medication.This is still better than having him stay in the hospital again, which they were considering.
Just as Sean's airways become totally clear two days later, a brush fire sweeps through the foothills and spreads smoke and ash over our neighborhood.Simply going out to the mailbox starts Sean wheezing, so I become hyper-protective and we spend the rest of the day in his room, near the HEPA air filtration system.
Eleven months.Sean wears a stainless steel medic alert bracelet on his wrist with information about his extreme food allergies.Sean has been on the strict, highly limiteddiet which includes the formula from England for a month.His skin is clear, soft and supple.There are no signs of a skin disorder anywhere on his body.He is healthy and happy.We have put away the Theophylline liquid cortisone medication, the strong tar based seborehea dandruff medication, the 2% cortisone creams, the coal tar creme extracts, and the greasy Aquphor cream.I only apply a light layer of lotion in the morning and after his (now daily) bath.We still use Cetaphil as the cleanser in the bath, but just once I use a scented baby shampoo to make him smell like a "baby" again.His hair is returning to being thick and shiny.
Twelve months.With no perfume used in washing his clothes, double rinsing everything, using only 100% cotton, removing the carpet from his room and running the HEPA air filter system 24 hours a day, in addition to his extremely limited diet, the wheezing and rashes have stopped.Sean is ready to walk, cruising on the furniture and using a walker to get from room to room, rather than crawling.We send a sample of his blood to Johns Hopkins for a more definitive RAST test to see how Sean's immunity and food allergies are progressing.To celebrate his first birthday we make him sorbet from organic peaches in our ice cream maker, and give him a peppermint stick.It is a highly emotional day for us as his parents.
The RAST results define Sean's allergies as severe.Dr. Hugh Sampson, head of Pediatric Allergy and Immunology believes Sean's has a 97 percent chance of having these allergies all of his life, that he will not outgrow them as others have hopefully suggested.He suggests we bring Sean to see him, but the cost to us is prohibitive and our insurance company denies us assistance.
After reading up on excema and food allergies I add one perle of evening primrose oil to his skin to increase his Omega-6 fatty acid (LA) intake, and added a teaspoon of flax seed oil to increase his Omega-6 and Omega-3 fatty acid (LNA) intake in one bottle of formula each day. After three days he began breaking out in patches of eczema so I removed the flax seed from his diet, and in two days his skin cleared completely.This makes me think he still has a gluten allergy.I still rub the evening primrose oil on his skin with no ill effect.
When Sean is eighteen months old we are riding in our car, taking Melissa to kindergarten.Sean is in the back in his car seat eating his first orange.He hasn't had an orange before, but he appears to enjoy it, and I think, "Oh good! A new fruit he can tolerate."Within minutes Sean has broken out in hives on his face and arms and his face is swelling.He begins to retch and vomit.
I am closer to home than to the hospital, so I drive home at a frantic pace, rip him out of the car seat, rush him upstairs to the bathroom, place him in the tub, grab the epi-pen, tear off his clothes and give him an injection in his thigh.I turn on the bath water and rinse the vomit from his skin, which appears to be making the rash and hives worsen. I scoop him up, wrap him in a towel and get out the Atarax liquid anti-histimine and give him a full teaspoon.Within a minute of the injection and the anti-histimine he visibly calms down.His raspy breath diminishes and he begins to go limp in my arms.
My delight in his rapid recovery turns to fear as he seems to be fainting, and I fear he is going to die in my arms.I jostle him and croon to him to keep him awake while I run to the telephone and call my husband at work.While I wait for his arrival I take Sean's pulse and do not put him in clothes so that I can watch his chest rise and fall.The hives miraculously disappear within the half hour, and Sean Gabriel, looking like God's most perfect angel that he was named after, falls asleep in my arms.I lay him down on his bed and go outside on the upstairs balcony.My legs go weak and I sit down and start to cry.This is where my husband finds me.
I schedule an appointment to take Sean to see Dr. Rachelefsky from UCLA again, and after I tell him about the "orange episode" he suggests we put Sean on a respiratory medicine called CS, Cromolyn Sodium, under the brand name Intol.He tells us CS works as a mast cell inhibitor, which will lessen Sean's reactions to foods and airborn allergens his body believes are "the enemy".The doctor warns us CS is the miracle cure for some people, and has little or no effect on others, and there is no explanation why.He tells us to have Sean breath it three times a day for a month and monitor him closely.Our insurance company comes through for us on this one, and they supply us with a nebulizor, mask and hoses, and a supply of CS.
After a month on CS Sean can run on the grass in our backyard and not break out in a rash.He can pet our dog without wheezing.He must avoid many foods - all wheat, eggs, milk, soy, nuts, but if he eats a small quantity of some borderline foods like chicken, nothing seems to happen to him.We are careful to put the few foods he can tolerate on rotation so that he doesn't become sensitized to them.He drinks the amino acid based Neocate formula until he is four years old (they provide it in orange flavored juice boxes) to supplement his limited diet.
I write a letter to Neocate, thanking them for providing a sustenance that helped keep Sean alive.They write back, saying it was gratifying to hear a success story, as most patients who drink their formulas are at the end stages of life.
Sean just celebrated his twelfth birthday.After only three or four hospital emergency visits due to ingestion of foods to which he is allergic, he continues to thrive.He still uses CS by nebulizor twice a day.He occasionally needs Albutrol to help clear his airways.His height and weight are in the 50 th percentile.His skin is clear, his hair is shiny, his eyes are bright.He is a good student.His public school has an emergency response plan in place, which, thankfully, has never been utilized.He plays team soccer and has a black belt in Tae Kwon Do.
His friends and family are careful in what they provide him, but for me, his Mom, I see danger lurking around every corner.I fear for him when he is not with me.As he grows and becomes more independent, I hope I can teach him to take as good care of himself as I try to do now.